AwareNow: Issue 33: The Mindful Edition

AwareNow™ is a monthly publication produced by Awareness Ties™ in partnership with Issuu™. Awareness Ties™ is the ‘Official Symbol of Support for Causes’. Our mission is to support causes by elevating awareness and providing sustainable resources for positive social impact. Through our AwareNow Magazine, Podcast & Talk Show, we raise awareness for causes and support for nonprofits one story at a time.

“We cannot become what we want by remaining what we are.”

Max Degree

mind· ful /ˈ mīn(d)fəl/ (adj.) consciously aware

As we move through our lives, we are aware that every action causes a reaction. We are mindful that our actions create reactions in others. We understand that our actions can create a movement, but before we act, we must be aware.

Awareness provided in ‘The Mindful Edition’ is shaped in 30 stories, that take the form of exclusive interviews, personal stories, poetry and paint. Let what you read, see and hear in these pages serve as a catalyst for personal growth and change. These stories connect us through our shared humanity.

From discoveries helping cure Alzheimer's to deployments serving our veterans to insights acknowledging our indigenous brothers and sisters, we are reminded that what's out of sight is not and should not be out of mind.

This edition is an invitation to be more mindful. Buddha said it best, “Our life is shaped by our mind, for we become what we think.”

We think it’s time. We will no longer ask for permission to change the world… but we will ask you to join us as we do. You are invited to join the AwareNow Nation. www.awarenessties.us/nation

ALLIÉ McGUIRE

Editor In Chief of AwareNow, CEO & Co-Founder of Awareness

Ties

Allié started her career in performance poetry, then switched gears to wine where she made a name for herself as an online wine personality and content producer. She then focused on content production under her own label The Allié Way™ before marrying the love of her life, Jack, and switching gears yet again to a pursue a higher calling to raise awareness and funds for causes with Awareness Ties™.

JACK

McGUIRE

Production Manager of AwareNow, President & Co-Founder of

Awareness Ties

Jack got his start in the Navy before his acting and modeling career. Jack then got into hospitality, focusing on excellence in service and efficiency in operations and management. After establishing himself with years of experience in the F&B industry, he sought to establish something different… something that would allow him to serve others in a greater way. With his wife, Allié, Awareness Ties™ was born.

This is a societal issue, not mine.

ELLE SELINE MUSICIAN, MENTAL HEALTH WARRIOR & MISS GREAT BRITAIN PUBLICITY

Photo Credit: Beth Lock

In the UK’s longest running pageant, the title of Miss Great Britain Publicity for 2021/2022 went to Elle Seline who made history as the first winner to proudly be makeup-free. A mental health worker who lives in London, Elle is redrawing the lines of pageant perfection with her normalized curves and natural complexion.

ALLIÉ: If you are like me, which you are, you are probably asked this all the time. “What are you?” Being of mixed heritage this is a common question. So, let’s hear it. What ethnicities are you? And why did being mixed make it hard growing up?

ELLE: So I am a bit of everything, Romanian, British and Greek. I grew up in Greece and due to living on a tourist island we were all used to different cultures and people. There were a lot of mixed heritage kids in the school too so that was never an issue, however when I came to the UK to attend boarding school this is where it got dif ficult. With my darker skin and features coming to quite a sheltered out of London environment at a young age, I was a target for bullies. A lot of them did not understand culture and instead of just asking me questions I got made fun of for my features and quirks. The UK was also a huge culture shock for me too. I acted out in class and towards some of my

That little girl I once was grew up and turned her pain into power.

ELLE SELINE MUSICIAN, MENTAL HEALTH WARRIOR & MISS GREAT BRITAIN PUBLICITY

Photo Credit: Liam Anderson

ALLIÉ: Because sharing is caring, care to share a story about hair? For those of us women who have more hair on our bodies than others, mean things can be said. What did you hear? And what did you do?

ELLE: When I was in senior school in the UK I was ridiculed for my hairier arms and thick eyebrows. The kids would call me names such as gorilla or shout comments such as “You look like a man” at me. Being a young person was hard enough however being a young person who did not fit in made it even harder for me. I remember shaving my arms and over plucking my eyebrows desperately trying to fit in and be accepted. I would use a lighter shade of foundation than my skin to make myself look more like my peers and hide the darker hairs on my face. I remember another time on a school trip at a water park one of the boys commented on how hairy my back was. I can recall grabbing my t-shirt and did not take it off again even in the pool. It’s funny how things said to you in school can come with you into adulthood. I sometimes find myself looking at my arms even now and wondering if I am “too hairy” then I remind myself that I am in 2022, I will never see those people from school again and that my body hair is beautiful as it is. This is a societal issue not mine.

ALLIÉ: From being bullied and picked on, you became a pageant contestant and finished in the top 5. I’ve never been in a pageant. What is the best part of competing? What is the worst?

ELLE: The best part of taking part was sharing my story on a national platform and meeting so many like minded women doing the same. Every one of us had a reason why which was very empowering. The worst part was the fear that I was going to fall flat on my face in heels. I usually wear flats or flip flops. I had to really practice my walk prior to the pageant, as always I wanted to challenge myself lol!

ALLIÉ: Before the filters provided by Instagram and Snapchat, Maybeline and CoverGirl offered filters of their own in the form of makeup. After so many years of wearing it like a mask, what made you realize you didn’t need it or want it anymore?

ELLE: During lockdown in 2020 I had a lot of time in my own head re flecting and calling myself out on a lot of topics I avoided, makeup being one of them. All the pressure to show up and glow up fizzled out as everyone was in lockdown. Going to the supermarket or chemists was our only out and wearing a mask in shops helped too to start off with. There was so much chaos going on in the world but through that chaos I found something positive to focus on which was my recovery and self acceptance. For years I have carried my traumas, one of those being how people ridiculed my appearance. I took it all with me into adulthood and due to my busy life prior to lockdown I didn’t dare unpack it. I would wear makeup to feel accepted and included, during my teens and in early adulthood I based my existence on other people’s view of me. A lot of people will ask, then why enter a beauty pageant and my answer is always the same, what I did was always bigger than the pageant, I used a controversial platform for my message to be heard loud and clear. Don’t get me wrong, makeup is an art and I am not against aesthetics, however I personally was using it for the wrong reasons. I figured there may be other women out there who needed the same encouragement and to be reminded that makeup and anything we do with our bodies as women should be our own choice. The beauty industry profits from our insecurities and has done for decades. We deserve better. As social media grows so do our insecurities and that is not ok.

“For years I have carried my traumas, one of those being how people ridiculed my appearance.”

IT’S OKAY TO BE YOU

Exclusive Interview with Elle Seline https://awarenow.us/podcast/its-okay-to-be-you TAP/SCAN TO LISTEN

ALLIÉ: While you didn’t want the makeup anymore, you did want the title. And the title you received. What did that do for you personally? And what do you hope it does for other young women?

ELLE: It was never about winning a title, it was about using the platform to tell my story and reach more people who may need to hear it. The pageant was my stage and makeup was the symbol. It was a huge personal achievement to become the first woman to ever do this and I will cherish the experience forever. That little scared girl I once was at school is beaming with pride somewhere because of everything I have accomplished and overcome. Life did continue after school even though at the time I was in a very dark place. That little girl I once was grew up and turned her pain into power. I hope my story and stance help young women everywhere who may be going through the same thing as me. I want them to know they are good enough as they are, their self-validation is not based on someone else’s views, and it’s their choice with what to do with their bodies.

ALLIÉ: This month is Bullying Prevention Month. To those who have been bullied, you say, “It’s okay to be you.” What would you say to the bullies? Often it’s the bullies who need that reminder more than anyone. The hurt they in flict on others is often a reflection of the hurt they themselves have endured. To those who bully, what would you like to say?

ELLE: This is such a perfect question to end our chat on. I would say to the bullies please question why you feel the need to comment on someone else’s being. Educate yourself on matters you don’t understand, don’t be afraid to reach out for support, write a journal, speak to a trusted person and give yourself space and love to heal. While I appreciate you too have been hurt this is not an excuse to spread the hurt on to someone else. I believe early intervention is key and needs to be practiced constantly in order to help everyone who is suffering. ∎

Introducing

ELLE SELINE

Awareness Ties is proud to introduce Elle Seline as an Official Ambassador for Bullying Awareness. We are proud to welcome Elle as part of our family as we work to raise awareness for the causes that tie us all together one story at a time to elevate and empower others. Learn more about Elle and her story: www.awarenessties.us/elle-seline

A WORLD OF CONTENT FOR THE CAUSES YOU CARE ABOUT

People

BRENNAN SRISIRIKUL DISABLED ACTOR, PRODUCER, SINGER, MOTIVATIONAL SPEAKER AND AUTHOR

Photo Credit: Andy Henderson/MurphyMade

don’t see the power in people with disabilities.

BRENNAN

Brennan Srisirikul is a Massachusetts based disabled actor, producer, singer, motivational speaker and author. Born in Bangkok, Thailand, at birth, he was diagnosed with cerebral palsy. Due to his will and tenacity Brennan survived, despite having less than a ten percent

Model, Actress & Host www.awarenessties.us/jessica-frew

I’m Jessica Frew. I have cerebral palsy and communicate with a Tobii eye gaze computer due to my CP. I’m a model and actress. In this exclusive interview series, I will have conversations with professionals in the entertainment and fashion industries that I love. Through these interviews, I’ll serve my purpose and raise awareness. I’ll open opportunities for other nonverbal models and actors with communication devices and for all who haven’t been given the chance they deserve to be seen and heard.

JESSICA FREW

DR. NICOLAS BAZAN NEUROSCIENTIST,

To me, it is up to the individual to embrace this life and everything granted to us.

AUTHOR, SPEAKER, EDUCATOR & DIRECTOR OF THE NEUROSCIENCE CENTER OF EXCELLENCE AT LSU

MIND OVER MATTER MATTERS OF

World renowned neuroscientist Dr. Nicolas Bazan is the very definition of a renaissance man. With interest and expertise in a number of fields, he can metaphorically de fine his scientific research and technical findings in a way where his brilliance isn’t lost in translation, but found in a manner deserving an ovation.

ALLIÉ: Your fascination with the mind began before you were nine. Dr. Bazan, you were eight-years-old when your aunt had a grand mal seizure. In your fictional novel, Una Vida, that is based on your life, your aunt’s seizure is referenced this way, “His aunt began to convulse violently… her body flailed like a chicken whose neck had just been wrung.” While this was a long time ago, can you still remember the details of that moment? If so, please share. Please take us back to that moment with you that set the course for your career and your life.

DR. BAZAN: Yes, I remember that event quite vividly, and although Una Vida is a fictional novel, this scene was completely autobiographical. My aunt was walking me to a piano lesson. We were in the street, walking blocks to the conservatory when she had a seizure. Later, my mother explained to me that my aunt had epilepsy, but the event

BAZAN

I think any success I’ve had can be attributed to a desire for balance and for finding alternative ways for opposites to coexist or enhance one another rather than stand in opposition.

DR. NICOLAS

NEUROSCIENTIST, AUTHOR, SPEAKER, EDUCATOR & DIRECTOR OF THE NEUROSCIENCE CENTER OF EXCELLENCE AT LSU

DR. BAZAN: (continued) However, I refused to go to the conservatory after the seizure. I regret not sticking with it because I love music, but the trauma of witnessing something like that followed me through primary school, high school, and beyond and unconsciously made me interested in medicine. In fact, it set the course for my entire life path and motivated my decision to attend medical school and likely to conduct brain research.

ALLIÉ: In Una Vida, music plays a large role. You and I have talked about the correlation between music and the mind. I’d love for you to share the effect music has on the brain and how music can be a beautiful metaphor to describe our minds and how they work.

DR. BAZAN: Music therapy is, in a definitive way, helpful to patients in the advanced stages of Alzheimer’s disease. Music awakens certain circuits in the brains of patients with Alzheimer’s. Some, not all, will reconnect in a temporary way with music. These findings are strongly supported with detailed research… Still, there’s a big unknown there about which circuits in the brain are linked to the auditory system, to music, and to memory areas. I use music in my novel to somehow connect the issue of Alzheimer’s disease with the beauty of the city of New Orleans and jazz. The main character of the novel is a jazz musician that has Alzheimer’s disease. First, it was in a way a metaphor to try to convey the influence of music on the brain. Second, my intention was to remove the stigma of Alzheimer’s disease. In our society, we have many stigmas linked to conditions of our brains. Alzheimer’s, epilepsy, addictions… These are diseases, and people should not be stigmatized.

two pages

“Music therapy is, in a definitive way, helpful to patients in the advanced stages of Alzheimer’s disease.”

NOTE: On the

that follow, family, friends and colleagues of Dr. Bazan are featured, including Nobel laureates Francis Crick, Edmond Fischer, Bengt Samuelsson and Sir John Vane.

DR. NICOLAS BAZAN NEUROSCIENTIST,

My intention was to remove the stigma of Alzheimer’s disease.

AUTHOR, SPEAKER, EDUCATOR & DIRECTOR OF THE NEUROSCIENCE CENTER OF EXCELLENCE AT LSU

is a void in the understanding of conditions of the brain…”

ALLIÉ: Many great books become great films. This holds true for your novel, Una Vida, that became the film, Of Mind and Music. Written by you, along with Richie Adams who served as the director, with Brent Caballero as a producer and coordinator, the film stars Joaquim de Almeida, Aunjanue Ellis, Bill Cobbs, Sharon Lawrence, Ruth Negga, Marcus Lyle Brown, Andre Royo and others. The cast did an amazing job of embodying the characters you created. What was it like to see yourself, portrayed as the character Dr. Alvaro Cruz, played by Joaquim?

DR. BAZAN: It was surreal to see myself portrayed by a famous actor on screen. Joaquim de Almeida did a fantastic job as a doctor in the film and was very interested and motivated about capturing that. Something he also con fided was that his mother suffered from Alzheimer’s, and that is why he was so motivated to present this story with authenticity. He and I talk all the time, and it was an extraordinary experience to have this famous movie actor portraying me in the film. In most of his films, if not all, he typically plays the antagonist. What he did here was very different and deviated greatly from that bad guy archetype. He pulled it off in a remarkable way. I feel incredibly honored to have been represented by such a talented and thoughtful actor.

ALLIÉ: In addition to writing dissertations and reports, you write novels and screenplays. As a neuroscientist, why is it important for you to use your knowledge of the mind outside of the lab?

DR. BAZAN: It’s about communicating with the community and reaching out to people. I believe there is a void in the understanding of conditions of the brain, particularly as we age. So my novels have an objective to try to somehow communicate that people in the labs like me and many others are trying to solve these issues that are so important. Knowledge helps us understand terrifying life events and helps us find cures to ease the burden on patients, caretakers, and everyone in society.

CLICK, TAP OR SCAN TO WATCH NOW

“There

ALLIÉ: We’ve talked about the artistic application of your knowledge. Now let’s focus on the scienti fic work you’ve done. With so many successes over the years, what are your personal top 3 achievements in the lab?

DR. BAZAN: First, I have always been lucky to be surrounded by colleagues, students, and fellows who work with me and bring talent, enthusiasm, and dedication. To me, that was an achievement to be able to attract a cadre of people. Recently, you, Allié, published accounts of female scientists I trained, and there were some candid statements made by former trainees. One trainee from 1970 wrote thoughts that were very moving to me. Other trainees from Chicago and Copenhagen wrote surprisingly touching accounts of their interactions. My leadership in that respect and mentoring has always been to encourage people and to listen to people while directing them to work as a team in research, and this proved to be a success in my mind as an achievement.

Second, a driving point in my research has been to decipher molecular logic that sustains neuron survival, and so we identify chemicals made in the brain that are like ‘molecular guardians’ of brain function important at the onset of disease or after stroke or brain injury, concussion, etc.

Third, an achievement is for me to be able to devote all efforts to understanding brain function and particularly to start finding ways to ameliorate or to slow down the onset of Alzheimer’s disease, Age-Related Macular Degeneration, Parkinson’s disease, and ALS. I hope making progress to limit the suffering of people with brain diseases and to be able to do this is an achievement because one is trying to help in the frontiers of knowledge to perhaps the more pervasive conditions like neurodegeneration that lead to cognition changes and blindness.

ALLIÉ: At this moment, you have several scientific breakthroughs you’ve discovered. I’d love for you to share what findings you’ve made recently that pertain to degenerative diseases like Alzheimer’s and acute events like strokes.

DR. BAZAN: We’ve been trying to unravel not only the genes but also how the landscape of epigenomics is essential for brain function and disease, but my interest there is to understand longevity and what we can do to prolong a healthy life. We live longer, yet many people are affected by these diseases or other chronic conditions. Epigenomics, which are genes that can change, and we count DNA methylation and using proteomic technology and proteins we didn’t understand but function in the brain and the retina, for that matter. I have been fascinated my whole life trying to understand the human brain. It is extraordinarily complex, with 1 billion neurons and the same number of other cells like glia. There are about 100 trillion synapses, the connections between the neurons, in our brain, and they make up neurocircuitry that is captivating. People compare AI and computers with our brain, but I believe no matter what, our brain outperforms all of those algorithms because we have the capacity for abstract thinking, understanding complex concepts, planning, social intuition, and emotions. However, AI and machine learning are helping us already in research and in many other aspects of daily life.

ALLIÉ: Let’s get technical with a conversation specifically about aging and where it intersects with your work.

DR. BAZAN: One project that we are developing now is on successful aging. Many people will have functional integrity of the brain at the age of 90 and beyond, while the brain starts failing for others earlier. A famous example of this is Michael J. Fox. Of course, familial forms of diseases pop out, but at 65 or so, people start getting affected by Alzheimer’s disease. One-fourth of 85-year-olds will have Alzheimer’s disease, and those forms of Alzheimer’s disease are called sporadic because there is no familial gene. They may have misfunctioning genes but not due to familial genes. So, we are still trying to understand many factors in sporadic, non-familiar forms. Aging is the ductile result of highly interlinked cellular and molecular pathways that aim with speci fic signals to minimize the possibility of damage and to enhance resilience. It affects every tissue and organ. In the last several years geroscience has evolved to increase understanding of the aging biology to amend, delay or reverse age-related pathologies. Our laboratory aims to uncover a synergy through combinatorial interventions targeting processes that drive aging. Molecular “signatures” for successful aging are delineating a promise for extending the health span (years of healthy life) of humans. Cellular senescence underlies aging and contributes to the development of Alzheimer's, as senescence affects multiple cell types in the brain. Senescent cells develop a senescence-associated secretory phenotype (SASP), which can be toxic to neighboring cells and allow senescence to propagate. Our molecular guardians counteract senescence gene programming and as a consequence counteract neuroin flammation.

OVER MATTER

ALLIÉ: Beyond your life in the lab, in your office, on set and on stage, you have a life at home. Among all your achievements, I know your family is at the top of your list. You and your wife, Dr. Haydee Bazan, raised five accomplished children and are blessed with 14 grandchildren. You’ve been incredibly successful both at work and at home. How? What is your secret to that level of success in life?

DR. BAZAN: I think any success I’ve had can be attributed to a desire for balance and for finding alternative ways for opposites to coexist or enhance one another rather than stand in opposition. In the same way that we can see music succeed where science fails at reaching Alzheimer’s patients, I have always believed in a higher power beyond my own understanding. My wife Haydee and I, along with our children, managed to escape the Argentine military dictatorship four decades ago and start a new life in the United States where we could be free to do our research without intervention. I believe someone was looking out for us, but our blessings did not come without major adjustments and growing pains. To me, it is up to the individual to embrace this life and everything granted to us. It has been remarkable to witness how our children adapted after sadly moving from one place to another after being forced to flee Argentina. They were only 14, 12, 10, 7, and 2 years old when they learned that we would be boarding a one-way plane to America in a couple of days and leaving everything behind. When we relocated in July 1981, our children didn’t know the language and didn’t understand the culture of America. In a short period of time, they adapted to this new world. Obviously, over the last 40 years, they have been through ups and downs, just like any other human being. Still, Haydee and I count ourselves lucky because despite all those obstacles, our children have incredible ethics, values, and dedication to family, and all of them contribute to our society and our community in different ways.

ALLIÉ: Let’s end this conversation with an operatic metaphor. As a patron of the arts and supporter of the New Orleans Opera, this seems befitting. For those who feel their life has consisted of nothing but a straight tone, how do they find their vibrato?

DR. BAZAN: Finding your vibrato requires something difficult, and that is to push yourself outside of your comfort zone. Doing anything new and worthwhile will likely be uncomfortable in the beginning, but that discomfort is also how you know you are growing. Repeated failure will always inevitably lead to success. ∎

“Finding your vibrato requires something difficult, and that is to push yourself outside of your comfort zone.”

Moving the needle in neuroscience.

bringing findings from the lab bench to the patient’s bedside

Converting scientific breakthroughs to clinical applications, Dr. Nicolas Bazan is applying new knowledge reflected in some of the over 140 patents and 3 companies to unmet needs in neurology and ophthalmology.

South Rampart Pharma www.SouthRampartPharma.com

South Rampart Pharma is a clinical-stage life science company focused on advancing innovative small molecules designed to overcome the risks of current pain medicines. South Rampart Pharma has a team of experienced clinicians, researchers, innovators and lead business management experts who recognized the immense burden placed on patients and the healthcare system from the limitations of available pain medicines—which is why we’ve set out to change the status quo. NeuResto Therapeutics www.NeuResto.com

NeuResto is developing novel first-in-class therapeutics that promote neuroprotection and neurorestoration. NeuResto’s focused target is on large unmet clinical needs including Alzheimers’s, Parkinson’s, stroke, traumatic brain injury (TBI), and age-related macular degeneration (AMD), for which there are currently no effective therapeutic options.

Curvir Biotech www.CurVirBiotech.com

CurVir Biotech has licensed innovative compounds that block the entrance of SARS-CoV-2, as well as other viruses, into the lung, nasal mucosa, eye, brain, and gastrointestinal tract. The unique approach also includes counteracting viral actions reflected in long-COVID affecting the brain as well as the heart.

“I was honored to sit with Tulane Professor, Peter Ricchiuti, for an episode of OUT TO LUNCH to talk about how we’re beginning to apply our laboratory findings to open therapeutic avenues for unmet needs in neurology and ophthalmology by means of the startup companies,” said Dr. Nicolas Bazan.

SCAN OR TAP TO LISTEN

Above (left to right): Patricia Bazan, JD (daughter of Dr. Nicolas Bazan), Dr. Nicolas Bazan, Peter Ricchiuti (Finance Tulane Professor), Tonia Aiken, RN, JD (CEO of SafePush LLC) & James Aiken, MD

“My ongoing goal in medical sciences is to continue to foster the creation of a culture that facilitates unraveling fundamental issues of the biology of aging, inspires novel ideas, and opens avenues for translating therapeutic concepts into age-related diseases, from the lab to the clinic to the community…”

“…That is why I have devoted my efforts to studying cellular and molecular events reflected as a response to one major challenge to civilization—the growing incidence in the loss of cognition and sight. My ideas synergize with the rise in the occurrence of neuronal-survival failure, as shown by age-related macular degeneration and Alzheimer’s disease. In neurodegenerative diseases, apoptosis and other forms of cell death lead to selective neuronal loss. Although age is the main risk factor, not everyone develops these diseases during aging. Understanding how successful aging evolves would help us identify what fails in the onset and progression of neurodegenerative diseases. This and related fundamental principles motivated me to contribute to the translation of our discoveries, including new synthetic, neuroprotective, antiviral, antipyretics/analgesics, as well as other potential therapeutic compounds for Alzheimer’s disease, Parkinson’s disease, stroke, pain, epilepsy, traumatic brain injury, age-related macular degeneration, brain tumor invasiveness, and viral infections. Thus, we are part of the remarkable current realization of the significance of DHA and other key chemicals for central nervous system organization, functions, and pathologies and for our contributions to revealing molecular principles, including novel, pro-homeostatic lipid signaling, which sustains brain and retina cell integrity. Our discoveries became patents licensed from LSUHSC to startup companies that we co-founded: 1) NeuResto Therapeutics, LLC, 2) South Rampart Pharma, LLC, and 3) CurVir Biotech, LLC. ”

Nicolas G. Bazan, MD, PhD Professor and Director, Neuroscience Center of Excellence Ernest C. and Yvette C. Villere Endowed Chair of Retinal Degenerations

Fight a good fight.

HILDA BERNIER MOTHER & INCLUSION ADVOCATE

Photo Credit: Forget Me Not

FORGET ME NOT

In the documentary, Forget Me Not, as 3-year-old Emilio prepares to start school, his family finds itself embroiled in a challenge all too common for children with disabilities - to secure the right to an inclusive education. Cornered in one of the most segregated education systems, New York City public schools, filmmaker Olivier and his wife Hilda turn the camera on themselves and their child with Down syndrome, as they navigate a system originally designed to silo children with disabilities. Here, Hilda Bernier shares more about their story.

ALLIÉ: Your film, Forget Me Not, does a phenomenal job of showing the injustice that children with disabilities and their parents are unfairly dealt. Regarding the education system in New York City, instead of the system helping, it seems to hinder. With protocol based on disabilities as opposed to capabilities, you’ve had to fight against the Department of Education, who should have been fighting for you. What have you learned about this system?

HILDA: Well, the main takeaway that I have from this whole experience is that the education system needs to make a lot of changes in order to prepare schools to deal with all kinds of students. And when you have a child with a disability and you're coming into this journey, you need to be prepared and informed. You need to be prepared to

Emilio is a very authentic human being.

HILDA BERNIER MOTHER & INCLUSION ADVOCATE

Photo Credit: Forget Me Not

HILDA: (continued) best for your child, then other people are going to make the decisions for you. And they are not necessarily decisions that will work on your child's behalf. There are systems in place that are designed to trap students with disabilities into segregated settings, for example, which is part of our story. From a very early age, our son was being recommended to be segregated just because of the fact that he had Down syndrome, which is a visible disability. Sometimes for administrators and professionals in the field, it's very easy for them to justify their decisions. I learned that I need to be his best advocate, and I need to fight a good fight. I am not here to break out war. I will work with the education system to make it work for my child, but it's work that has to be done. We need to be able to work together. We have to be on the same page. And if we are not, we need to find common ground. The system has to do a lot of work when it comes to preparing schools for all kinds of students, but as a parent, when that doesn't happen, we have to make sure that we make it work for the kids.

ALLIÉ: Often teachers will grade on a curve to improve grades. When it comes to curves, when Emilio was tested for his IEP (Individualized Education Program), you were told he wasn’t even on the curve. In a very powerful part of your film, you were shown a scale on which you were told your son couldn’t be found. There wasn’t a place for him. If that doesn’t speak volumes about a student not being ‘seen’, I don’t know what does. I can only imagine how you felt at that meeting. Do you feel their protocol was prioritized over his potential?

HILDA: Protocol was definitely prioritized. It was all about protocols. It was all about that curve. It was all about how his deficits were more dominant than his strengths. And that was very heartbreaking because I have been observing my child on a daily basis and working with all his early intervention therapists. I know what his strengths are. So at that moment, where they were telling me that he wasn't even on the curve… for me that was very disorienting because that was not the child I was watching every day. And you have these evaluators at this point in their early development that come to your house. They make these evaluations after they sit with your child for like an hour. People that have never seen him before. You know, they do what they do. What if the kid is having a bad day or not feeling well? There's many factors that can play on the performance of a child that's been put into that position. But they come for an hour and they sit. Then they come up with these reports. And when you look at them, you're like, “Oh my God, who is this kid? This is not who I am looking at.” So, the protocol was prioritized. His strengths were not taken into consideration. When it comes to making a recommendation, the fact that the strengths are mostly overlooked, it's very upsetting. You have to really set your mind on setting the record straight, right? Because if you don't do it yourself, you cannot speak. At that point in time, Emilio was below age three. He wasn't even three years old yet. He was moving from one step to another. And I'm sitting there thinking, okay, so they want to put my son, who is a three-year-old child in a segregated class just because this evaluation is putting his abilities in such a poor light? It was just one of those things that you can never be prepared to hear. When you're coming in, you're not thinking about that because you know your child. After meeting them (the IEP administrators) for the first time… I would say I always like to think the best. I have a lot of faith in humanity, and I always like to think that people are good and well intentioned. But when the systems are not in place to support your child, and people are making decisions based on curves and charts and assessments that don't find him anywhere, then you have to get ready to fight for what you believe is the right thing for your child.

“It was all about that curve. It was all about how his deficits were more dominant than his strengths.”

Don’t be afraid of letting them be children together.

BERNIER

HILDA

Photo Credit: Forget Me Not

ALLIÉ: In order to create a truly inclusive society, once a disability is acknowledged, it must be accepted, which is still not enough. It must be appreciated. As a friend of mine who has a son with Down syndrome shared with me, “There’s something special in that extra chromosome.” There is so much about your son, Emilio, to love and appreciate. What is it that you most appreciate about him with regard to his disability?

HILDA: Emilio is a very authentic human being, and that is something that I need to apply to my own life. I really admire that transparency and that honesty that he carries along with him. I believe if we could all live our life like that, we would be so much better. We would be more willing to accept and learn from each other and acknowledge when things are difficult and when things are fantastic. Emilio is so authentic and transparent. He will let you know what he needs, what he wants, what he's not comfortable with. And I feel that is turning me into a better mother and a better member of my community. Now, through him, I have the ability to be more true to myself, to my friends, to my family. His authenticity has made a huge impact in my life.

ALLIÉ: There is so much to value in our diversity. As opposed to segregating, we need to be integrating for the bene fit of all. When it comes to Emilio in an integrated classroom, there is value to be found on both sides. In your words, what is the win for you son? What is the win for the other students?

HILDA: There are so many wins for him. It is known that peer modeling is very important for children with Down syndrome, because they're very visual learners. I can speak for Emilio. He takes it all in. He has this ability to absorb everything that is happening in his environment. He gets a lot from being in an inclusive setting because he has the opportunity to see how everybody navigates the same environment and how they can coexist together in the same spaces. More importantly, it allows him to become part of the community. Inclusion is so important. And just the fact that he has the opportunity to be included, it opens the doors for him to so many things. Recently, he was able to start a dance class and a karate class, and he's living his best life doing all these things. That's what inclusion means. Inclusion means that we are all able to navigate the same spaces, and we can make it work. In that regard, I am very satisfied with the way he is handling everything, because he's getting so much from it.

CLICK, TAP OR SCAN TO WATCH NOW

AwareNow Podcast FORGET ME NOT

Exclusive Interview with Hilda Bernier https://awarenow.us/podcast/forget-me-not

HILDA: (continued) And there's plenty of research that says neurotypical children benefit from having children with disabilities in their classrooms. Besides that, what's more important is that they can learn that the difference that they have can be used to learn from each other. It can help them become more empathetic human beings. Something that my husband Olivier always brings out in the conversation is that when he was in school, he never had anyone with Down syndrome in his classroom or anyone with an intellectual disability, or even anyone with physical disabilities in the classroom. So, when he came to parent a child with Down syndrome, he didn't know what to do or how to handle it, because he'd never been exposed to anyone with a disability. So, that opportunity that neurotypical children have to share their life experiences with them is so important, and it can only enrich their lives. There is nothing that says that neurotypical children are hindered by the presence of children with disabilities in their classrooms. You can try to look for that research, but it's nowhere to be found. That is something that lives in the minds of the families and people that have been following a system that is made to separate instead of bringing everyone together.

ALLIÉ: Parents serve several roles for their children. In addition to Emilio’s mother, you are his caregiver, health provider, activity coordinator, emotional nurturer, relationship coach and the list goes on endlessly. As his mother, one of the most important roles you play is as his advocate. For parents who have a child with a disability, what would you like them to know?

HILDA: I would like to encourage parents to define their priorities as a family and decide what their goals are when it comes to educating their children with disabilities. Because once you have set your priorities and you work towards that, you can find ways to fight the good fight. And the beauty of it is that when you have an idea of what you want your child to achieve and how you want your child to get from A to B, because the road can take you in many directions and is not straight forward, you have a better picture of how you can accomplish those things. Parents are the best advocates, and nobody can take that away from them. Fight a good fight.

ALLIÉ: For parents who do not have a child with a disability, what would you like them to know?

HILDA: I would like them to know that there's no need to be afraid. Children are more flexible and resilient than we could ever be. There's so much that they can get from being alongside students with disabilities. So, don't be afraid. Don't be afraid of inviting them to birthday parties. Don't be afraid of letting them be children together, because children see things very differently. We cannot impose our prejudices and biases when there is so much more that they can gain from each other. So don't be afraid. ∎

Insert text here.

TAP/SCAN TO LISTEN

This is about everybody…

CLOE HAKAKIAN (@CLOEHAKAKIAN) ARTIST & ACTIVIST

Photo Credit: Todd Goodman

IN HONOR OF MAHSA

FEATURING STREET ARTISTS TODD GOODMAN & CLOE HAKAKIAN

This story is a prime example of the power of the people and “The Writing On The Wall”. I am personally so grateful to all the people that came together to make this mural and interview happen. Moments like these are exactly why we created The Fame Yard. So people could exercise their voice through creativity to hopefully prompt others to do the same. With all the walls out there in the world no individual should be silent.

EDDIE: First off, I'd like to thank you guys for your support of the yard, the Fame Yard. It's been a long journey for me since I created that yard. And this is exactly why we created that yard is so that people would have a voice and a platform to not only exercise their own voice, but to hopefully get voices to other people through the example of you exercising yours. And I couldn't be more delighted with the outcome of this thing. And it's not necessarily how many people, but it's the impact on the people, whether it's 10 or 100, and I think the impact on this one really hit a grand slam. So, thank you guys for that. And thank you for taking the time to sit with us today for AwareNow Magazine. So, usually, we start these things by asking the guests this… Who are you? Tell us who you are. Not your name, but who you really are. Cloe, why don't you tell us who you are?

CLOE: That’s kind of a… It's a loaded question. I don't really want to be put into any one box. I don't want to be confined to one thing that I am. Yeah, my name is Cloe. Yes, I'm an artist. Yes, I'm Iranian. Yes, I'm Jewish, but it's kind of what else that makes me who I am. I play the piano. I love to read. I love to be with my family. There are so many things that make me who I am. And it's kind of just what's relevant at that moment, and I think right now, I have never been more proud to be an Iranian woman. And watching the girls of my kin, my blood all the way across the world, do what they're doing, it's so inspiring. It's so moving, I don't even really have words for it. So, I just want to be somebody who can support them. That's who I want to be in this moment.

EDDIE: Amazing. I don't think we've gotten one quite as honest, and as relevant to right now. Todd, what about you? Who are you?

TODD: I'm a soon-to-be father. And that's kind of where my mind, and heart, and soul, and attention is. I’m going to be the father of a beautiful girl and a woman. And that's all I am at this moment, and all I'll be for the rest of my life. And that's a new thing, and it's something that's… Yeah, what Cloe said was beautiful and perfect. I'm too many things to describe for this interview. All what's important right now is that.

EDDIE: That's amazing. As a father of two girls, I get it. I have two daughters, and I used to be like, “Man, I really need a boy.” And that idea is dissolved. Being a father of girls is amazing.

TODD: Honestly, I was kind of… Earlier in my life, I was like, “Oh, yeah, I'd love to have a son. I’d love to have a son do this, that, and the other thing.” And then as soon as I really started thinking about it, it was like, “F*ck no, I want a girl.” This world needs more women, and, God! I'm so excited to have a daughter, way more than I think I would have been… I'm so excited to bring a girl into this world and be a father for her.

‘THE WRITING ON THE WALL’ EXCLUSIVE COLUMN BY EDDIE DONALDSON

TODD GOODMAN (@1GOODHOMBRE) ARTIST & ACTIVIST

I started working on the basic concepts of the portrait of Mahsa… looking through images, thinking about how I wanted to present her.

Photo Credit: Juanita Hong

ALLIÉ: I have five boys and one girl. I’m excited for you. What an adventure you're beginning! Congratulations, Todd.

TODD: Thank you, guys… Thank you.

EDDIE: So, I know that Cloe and Todd, we've only both met each other once, briefly.

CLOE: During pride… I painted a mural for pride.

EDDIE: Yeah, you did the pride activation, which was amazing with Cory. And then, Todd reminded me that we met at the Love Malibu Style for Artists for Trauma. So, it's kind of cool that we all met at the right place at the right time, right… So, you guys want to tell us how the mural came about? How did it start? What was the idea?

TODD: Well, basically, the mural started on September 16. The day Mahsa was murdered. And whether or not we knew that was going to happen, that provoked what's happening in the world today as a conscious human being, as an extremely politically conscious person. As somebody who's been an activist, who has an academic background in international affairs, particularly in the Middle East, I've been very well aware of what's going on there and paying attention. But as I said in the very beginning, my mind these days and this year has really been focused on my child, my wife, and I obviously do a lot of political work. I did the mural thing earlier in the year on Ukraine. And so, I was thinking about how can I do something on this? I don't know. I don't really have the time. I kind of put it behind me. Like, “No, I got to be focused on my baby.” I did an event down in Santee Street downtown through the Santee Public Gallery. And Jason Savoir, a couple of days after I painted some pieces down there, he reached out to me and asked me if I would be interested in creating a piece on Iran, and kind of, that was my motivator. He's like, “Listen, I love what you do, and I would love for you to come down here and do something with me on our walls.” And he got me thinking, “Okay, yes.” That was the spark that finally got me like, “All right, I'm gonna put my ideas down.” I started thinking about what I wanted to do. Who do I want to work with? I started working on the basic concepts of the portrait of Mahsa. Looking through images, thinking about how I wanted to present her, draw her. I reached out to you, Eddie, and Cory at the time. I reached out to you first, Eddie, and I presented the idea that, “Listen, if you guys have space, I'd love to do this piece up there,” because I felt like Santee Street Gallery wasn't going to get enough attention, wasn't going to be seen enough by enough people, wasn't near necessarily the community that it needed to be available to. So, I asked him, “Hey, do you mind if I ask around to see if we can find a more public viewable space that's going to get more attention?” You said to me, “Pass it by Cory and see what she says. If she gives you the go-ahead, then it's all yours.” And I reached out to a couple of my Persian friends here locally to kind of start processing the ideas about what needs to be a part of the design. Because as an outsider, I'm an Ashkenazi Jew. Like I said, I have a background. I know what's going on. I understand the history, but I'm still an outsider, and I wanted very much to… Like what I did with the Ukraine piece, make sure that there was absolute direct in fluence not only in the design, but in the creation, the painting of people from the community that have direct ties, that have people that are directly affected by the violence. And I started reaching out to friends of friends that were… You know, “Do you know Persian artists?” So the conversation started with who's a Persian artist? Who do I know that would be willing to participate in this and wants to have a voice presented? And Cory along the lines introduced me to Cloe. And I think, Cloe, I was talking to Eddie before about two or three days, I think, of conversation back and forth put together what we eventually painted.

It was presenting Cloe with, “Here's what I've done. Here's the space where I want you to feel free to make sure your voice, your vision is totally present. That you feel ownership. That your voice is very clearly heard.” And not just hers, but her family, and her friends, and her community is voiced through this piece that we're creating. And she was gracious enough to be willing to take on this challenge. And I can only imagine how emotional it was for her to be speaking with her family and her friends. To get the feedback to find out what are the words, what are the emotions, what are the desires of this community that need to be presented in picture form in a mural that's going to just embrace them, and hold them up, and show them love, and show their anger, and show everything that they're experiencing. And so, I'll let Cloe take it from that introduction.

CLOE HAKAKIAN (@CLOEHAKAKIAN) ARTIST & ACTIVIST

What I was really looking for out of it was for the people in Iran, my family in Iran, the people here to know that they’re being heard…

Photo Credit: Kewis

CLOE: Yeah. So, Todd reached out to me, it was something that was already on my mind that I wanted to do. And, first of all, the fact that Cory was letting us wipe away her artwork, which was relatively fresh. For a street artist of her caliber to allow us to remove her artwork for something that she's not directly related to, I was beyond touched by that. I thought, “Wow, what an ally.” And further down the line, she has come through, and I'll touch on that later. From the beginning, it seemed like everybody really had the right intentions for it. And my intentions for it were, “I'm not going to end this revolution by painting a mural. I'm not naive enough to think that this is going to save somebody's life or make an impact in a huge way.” But what I was really looking for out of it was for the people in Iran, my family in Iran, the people here to know that they're being heard, and to know that they're not alone. And that we see you, and we hear you, and we're going to do whatever we can to support you. And part of that is with the art and the messaging. Part of that was the community coming together to create the project really together. And the way that it took off -- the power of social media, the power of regular media -- it accomplished that goal far beyond our expectations.

EDDIE: Amazing. I would definitely say that you have got the world's attention. And I would also say that I think the small things really do matter. In the scheme of things, Cloe you're absolutely right. This is a small piece of the puzzle but you'd be surprised by the impact that it has on individuals. So, I would not be surprised if it saved a life or two or three or 10 because of different actions taken that were felt by your support. So, you're modest in your understanding, and I think you guys did a really good thing. Allié, what do you got?

ALLIÉ: I remember the very moment I saw the post about the mural while sitting here in our home in Michigan. Watching things unfold about Mahsa in the news and feeling so removed from the situation and so helpless in that time and in that space… And then, to see that mural, I didn't feel so far away. I didn't feel so removed. To Eddie's point, the power of one piece, what that can do... It really speaks to the power of one person. The power of one mural… Maybe it didn't save someone’s life, but it definitely gave someone hope. And sometimes, just a little bit of hope is what will end up saving a life. And so, I think what you've done is such a beautiful representation of the power of paint, the power of writing, the power of art… Yeah. That’s what I got.

EDDIE: Yeah, the writing on the wall. I'm a graffiti artist by trade, I guess. And I started it for egoic purposes. We wanted to be known, and seen, and have fun at the party, and be cool. But I think as you grow that voice, you start to try to figure out how to use it for purpose. And I think it's wonderful that you guys have the ability to start early in your careers with such a mighty voice. It's amazing that now that this thing is so big, it's hard to think about what else to talk about…

TODD: Can I also just take a moment to say thank you, Eddie, as well, and Allié, and Cory, again, for giving us this space. It's amazing. It's awesome. I can't tell you how blessed I feel truly, truly blessed because I'm not from here. I don't have family here, I don't have connections, and coming out of nowhere to just trust us as artists to do something like that was really amazing. And so, I just want to say thank you guys for this opportunity for us to share and talk about it.

“This is a small piece of the puzzle but you’d be surprised by the impact that it has on individuals.”

EDDIE DONALDSON GUERILLAONE X THE SEVENTH LETTER

That’s the beautiful thing about the art world is that we’re all a community…

Photo Credit: Todd Goodman

EDDIE: In response to that, Todd, I think when we use the word community, sometimes it's thrown around lightly. It's like, we take it for granted that we're friends with people and that they like our stuff and follow us. But I think the street art community, in LA and around the world, it's a community. We support each other. Whether we like each other every minute or not, whether we agree with each other or not, most of us support each other. And that's what drove me to become a part of a graffiti crew. And that's what drove me to try to keep this thing alive. And as a 30-year veteran of the game, to see the power that you guys possess is mighty with what you do. But you do have a family… I'm part of your family now because we have had a very seriously experience together from a distance. Even though I wasn't there in the yard, I take ownership in what you guys did because I'm a part of this community that you belong to. Cloe's now part of your family. Your baby has a distant uncle. And Allié was in tears when she saw the video. So, by default, Allié is part of your family now. That's the beautiful thing about the art world is that we're all a community…

ALLIÉ: I was absolutely in tears. I'm like, “Eddie, my goodness gracious.” It's interesting because it’s one thing to look at a beautiful piece, you’re like, “Wow, that's powerful. That’s incredible. Super talented.” But then, it's another thing to ‘feel’ something. And when I look at what you did, I feel a lot. And there's something where it’s steeped in purpose. It's not just a random paint color here or arbitrary brushstroke there, it's all purpose driven with intention in every detail… Thank you for being amazing.

CLOE: We are not the ones… I’ve been telling anybody who says thank you to us -- we are not the ones to be thanked. It is the brave people in Iran. Some of those girls are half my age. Those are the women who are going to change the world with what they're doing right now. It's not us.

CLICK, TAP OR SCAN

TO WATCH NOW

“We support each other. Whether we like each other every minute or not, whether we agree with each other or not, most of us support each other.”

Photo Credit: Cloe Hakakian, Todd Goodman, Ira Edelman, & Juanita Hong

ALLIÉ: But to celebrate them and to honor them with your work, and hopefully, for them to be able to see what you've done. They must feel so proud of their position and of their strength… You're right. We have so much thanks to give to so many of these young ladies that are over there rocking it like they are. And for all of us who can't be there by their side, though we wish that we could be, by your brush (and your cans) we are.

EDDIE: Yeah, no doubt. Or by the hand, actually. There are hands on the mural.

TODD: I think that was such an important moment in the creation of this piece, and I got to give Cloe credit for putting that in the design. The object was always to have people from the community come in and paint with us and participate. I did it with the Ukraine piece we had. When I was doing that piece, people from the Ukrainian community -- either through social media, or just randomly passing by -- saw it and put a brush in their hand. And it wasn't just that, and we had people do that. They took a brush. Amazing volunteers randomly coming up, and, “What can we do?” Street artists. But the blood on the hands, and to sit back and watch it and see young… There were some young girls, teenage girls that came with their mom. They reached out to me and I told them, “Please come. Put your hands in the paint, be a part of this. See yourself in this.” And I don't know, I'm very much at a loss for words just hearing you guys talk about it. I think I'm still processing it. It's going to be a long time trying to process this. I can't explain how emotional this experience has been with everything that's going on. But wow, for me, I think those were probably the most powerful moments of the creation. It was just sitting back and watching these people crying, and just feeling it, and taking that away. And it was f*cking beautiful. Excuse my language, but that's who I am.

EDDIE: I wish I could have been there because I'm sure it was dope. But the good thing is, it'll live for a while. And with social media, it has legs so people can see it from their home and experience it and feel it. And I'm sure you guys will continue to talk to more people about this. Is there any parting words you guys might have for people reading that you'd like to leave us with?

CLOE: I definitely do. I think that whether or not you're Iranian, this is not about being Iranian. It's not about being a woman. If you are somebody's daughter, if you are somebody who has a mother, if you are a part of the LGBTQ community, if you are an athlete, if you are a musician, if you perform in any way, you are related to this. The basic human rights of all of these people are at stake. And if you're not willing to spread awareness of that, you should be reflecting on how you're looking at life. This is not just about Iran. This is about everybody. Until everybody's free, nobody is free… It's everybody's responsibility to spread awareness about this because you never know who you're going to reach that may actually have the power to do something about it.

EDDIE: Todd, got anything?

TODD: What Cloe said was absolutely perfect. Look at the courage of the women on the ground. If they have, under that type of oppression, and violence, and fear, if they have the ability to stand up every day, and do something and say something, wherever else you are in the world, most likely, are not facing that type of oppression and fear and violence. Please just use your voice, use any capacity you have to stand up for yourself, your community, your humanity, the people around you, the people that you love, and participate in this life. You have to participate. It's not enough to just sit back and watch it, you have to participate. So, I thank you guys for giving us the opportunity to do the very minor thing that we could possibly do to participate in this conversation.

“Put your hands in the paint, be a part of this. See yourself in this.”

AwareNow Podcast IN HONOR OF MAHSA

Exclusive Interview with Todd Goodman and Cloe Hakakian https://awarenow.us/podcast/in-honor-of-mahsa

EDDIE: Guys, thanks for taking the time out. Allié, you got any parting questions or something you want to say?

ALLIÉ: I just want to say thank you so much. There are so many right now who feel very voiceless, who feel very unseen. The fact that they are seen and they are heard through conversations like these, through artwork like you have bestowed and shared in this world… Thank you for helping all of us become a bit more aware now about what is possible. It’s so important to not remain silent. We have to participate -- be it through paint, through words, or through whatever means we have. ∎

Have a look at the mural of Mahsa Amini in the making in a two minute video by Juanita Hong: Cloe and Todd would like to give very special thanks to the following: Lila Camila Goodman, Corie Mattie, Sportie LA, Jason Saboury, Daniel Hernandez, Orly Hakimiand, and Eddie Donaldson, Gloria Vosoughi (Lili & Nilu), Gio Marincola, Saina Shayanjoo Natsumi Osawa, and Izumi Thorn

EDDIE DONALDSON

GuerillaOne x The Seventh Letter www.awarenessties.us/eddie-donaldson

Louisville, Kentucky native Eddie Donaldson moved to Los Angeles in 1986 and became involved with the graffiti movement as an alternative to the turbulent gang activity of his generation. Immersed first as an artist amongst diverse L.A. crews like TCF, AWR, and The Seventh Letter, Donaldson had the vision to develop their homegrown graffiti movement into something beyond the streets. His loyalty and business sensibility transformed the graffiti scene and he evolved into the point person for producing art events and exhibitions that inspire and spread the stylistic of southern California art into the world.

TAP/SCAN TO LISTEN

Find out where to vote. See what's on the ballot and contact your election ofcials. Use this voting information tool from Vote.Org: www.vote.org/polling-place-locator

Art is an interesting thing… I have done it because it was a medicine, and it was a salve…

JEWEL MULTI-PLATINUM SINGER-SONGWRITER & POET

ART IS A

JEWEL &

PHOENIX

JERRI NIEBAUM CLARK

STORY BY JERRI CLARK

MY SON’S STORY MENTAL HEALTH, SUICIDE & A MOTHER’S PATH TO ADVOCACY

I studied journalism with no idea that the most important story I would ever tell would be the tragedy of my own family.

My son, Calvin, was a happy baby, a solid student, and a successful athlete. He grew into a clever, curious, compassionate person. He also developed a serious mental illness in his teen years that devolved into psychotic episodes. A mental health care system in disarray meant that instead of helpful care, our family met heartbreak.

In disbelief, I watched my son’s world tilt away from a bright future punctuated by academic accolades and toward incarcerations, suicide attempts and hospitalizations in locked wards that didn’t make him better. Along the way, the everyday bad news cycle got personal. I’m not at all surprised that homelessness and suicide rates are rapidly rising or that so many police encounters end tragically. These are preventable social ills, but our service systems are not built to prevent them.

Families like mine strive to keep loved ones from hitting rock bottom, discovering that there really is no bottom and that help doesn’t prevent but instead requires a radical freefall. I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness. Calvin was 23 when he died from suicide March 18, 2019.

As I try to reconcile what happened to my son and our family, I have been compelled to dust off my journalism skills to write and holler my way into public view. While I work, the title of a book by Ron Powers spins me like the stanza of an unlikable but unshakeable song: No One Cares About Crazy People.

Powers fathered two sons who developed schizophrenia and lost one to suicide. His book is among a dozen or so by family members whose children have gotten sucked into the void of serious mental illness. I’ve contacted most of those writers, including Pete Earley, who wrote Crazy: A Father’s Search Through America’s Mental Health Madness.

Like Powers, Earley and other families in this fight, I refuse to let people not care.

I also refuse to slink away in despair. When I was new to advocacy, I posted a quote from Anne Frank above my computer: “How wonderful it is that nobody need wait a single moment before starting to improve the world.” When I doubt whether my voice will ever matter, I consider that quote, take a breath and get back to work.

I testified in the Washington State Senate for the first time January 18, 2019, when I believed there was still time to influence changes that might save my son. Lawmakers were reconsidering the Involuntary Treatment Act (ITA), a state law that determines criteria for behavioral health intervention. My hands were shaking as I held my printed speech. I leaned toward the microphone, made eye contact with the senators and tried not to cry as I began: “ITA law in Washington State traps an individual in an illness state so that the only way out is through violence.”

This statement was not hyperbole. A scene that haunts me still is a night when Calvin was on our back deck in the dark, swinging a large stick and “preaching.” On the patio table he had assembled bizarre altars built with playing cards from the Magic: The Gathering game, sticks and bits of food. He was interacting with unseen individuals, speaking words that were loud but not really intelligible. I encouraged him to come inside. His eyes were wild and dark. He didn’t hit me, but I was afraid when he blocked me with the stick and said, “Stop!” He was there, but not there. As I slipped inside to call for help, his manic raging continued.

PERSONAL

The disinterested county crisis responder on the phone suggested I lock my bedroom door and use earplugs to sleep. “It’s not illegal to be psychotic,” she said, clearly reciting something she had said many times. She explained why she wouldn’t do anything to help: “We’re protecting your son’s civil rights.” If he hurts someone or himself, she went on, then call police. I connected the dots in my head: My son had the civil right to avoid the hospital, but protecting that right put him at risk for arrest and possibly jail. To restore him to sanity, we would have to catch him in a narrow window between violence and crime.

There were so many times that the madness of mental illness policy crashed full force into my family. Calvin’s treatment took many wrong turns because of systemic disorganization, discrimination and underfunding. Still, I often circle back to the brokenness of that pivotal moment when we had no idea how to help our super-sick son and were told that violence and crime were the missing elements for intervention. Most infuriating was the smug crisis responder’s position that this lack of help served my son’s best interest— to protect his “civil rights.”

Civil libertarians who might be reading, please settle down. I’m one of you.

I believe in the right to agency and self-determination. What I have learned in the harshest way possible is that when someone is that sick, agency is already gone—stolen by the disease. Involuntary treatment is the only course of action. A mind so unwell cannot see its illness or a need for care. A person as sick as Calvin was that night is not saying “no” to treatment but instead is leaning into an alternate reality where Magic: The Gathering characters come to life and the world is on fire with excitement and opportunity. Of course, I suggested we go to the hospital that night. My offer made absolutely no sense to my delusional son.

Years later I learned the term anosognosia—a symptom of brain-based disease when a person is unable to “see” the illness because of disordered connections in the brain itself. When he was symptomatic, Calvin had no idea he was crashing toward disaster. As his mother, I saw clearly what was coming, just like knowing a small child who darts into the street is going to get hit one day. I had no power to prevent any of it.

I remember a time when happiness and health felt normal. I left Lawrence and my position as an assistant editor for Kansas Alumni in 1995, newly married and five months pregnant. My husband, Matthew Clark, g’92, settled into a career with Hewlett-Packard. I became mother to baby Calvin and Michelle, 10 years older than he. I taught yoga and children’s ballet, work that blended well with parenting. We loved our Paci fic Northwest home in Vancouver, Washington, where through the years we surfed off the Oregon coast and skied down Mount Hood.

Calvin became a state-champion debater and earned a scholarship to Willamette University in Salem, Oregon. Midway through his freshman year, he called in a rambling, tearful rant about being abandoned by fellow debaters. The details did not make sense. We brought Calvin home. Well past midnight, on February 16, 2015, I realized my baby boy had lost his mind.

Calvin’s speech was alarmingly disorganized and frantic. He did not sleep and was convinced a bathroom in our house was possessed and should never be entered again. A family doctor prescribed lithium. Calvin was at first relieved to have a diagnosis of bipolar disorder, like his paternal grandfather. This explained some of his confusion, so he agreed to take the medication. He got a job at the local farmer’s market selling cookies. He bought a Cookie Monster T-shirt. We were rearranged, but we were a family and happy to be together. There was even a magical day of surfing that spring when we all successfully caught overhead rides.

We came up for air, but the dangerous waves we would try to ride were just setting up. Events in the years to come tossed me around enough to reorder my understanding about what it means to be a parent, a compassionate person and an activist.

“To restore him to sanity, we would have to catch him in a narrow window between violence and crime.”

That first year ended badly, when Calvin got tired of the jitters and mind fog that were side effects of the medication and stopped taking it. His mind exploded with life plans—tour with a rap band, sponsor a homeless bene fit on the lawn of the Oregon Capitol, travel the world, join a commune, become a minister and drive, drive, DRIVE! It was like watching a train speed up just as the track started to crumble. A crash was soon to follow.

Calvin’s disinterested “provider” warned in a monotone that stopping the medication would be unwise. The choices were up to Calvin, and he felt no motivation to stay in “treatment” when the callings of mania were much more enticing. The first big crash happened in January 2016, when Calvin was hospitalized for suicidal ideation wrapped up in manic psychosis. While he was there, my father died. Jerome Niebaum, d’61, who retired in 2004 after a long KU career in academic computing, died on my 50th birthday, January 5, 2016.

While grieving the death of my dad and my son’s worsening mental health, I found life support from yoga. My practice went beyond physical postures into the philosophical underpinnings. I trained in a meditation technique called iRest (Integrative Restoration), which helped me understand the possibility of being with many emotions at once. I could find joy in the ocean while dripping salty tears onto my longboard. While my dad was in hospice, I wrote a poem for Thanksgiving that ended with this stanza:

The thanks I am giving this year is deep, and dirty. Thank you, world, for showing me what it feels like to be. In all its complexity. The raw, red-eyed reality of love and loss. I am grateful for the opportunity to feel. Grit/Great. Full. Real.

Pema Chodron, a Buddhist nun, advises in one of her books, “Give up hope.” As my son fell through rock bottom, this direction helped. My thoughts formed an essay published by a website for mental-health topics, “Brave Expressions.” Here’s a segment:

I started to consider that giving up hope might help me heal and continue to function. Hope is stuck in the future. Agency is right now. I decided to focus on what I could do instead of waiting with hope for things to sort themselves. I also had to give up hope that doing the right thing would get me what I wanted. Seeking the right action was worth it either way.

I started Mothers of the Mentally Ill (MOMI) in May 2018. At the time, Calvin lived in Seattle, unstably housed and often unwell. Calling for crisis intervention always took me back to that earlier phone call, when I learned that being psychotic was “not illegal” and that my son’s civil rights meant he had to be dangerous to get help. He did prove dangerous on several occasions, but hospitals barely kept him long enough for the “imminent” threat to pass.

Calvin’s final arrest happened after a hospital released him into homelessness. After wandering the streets for a week, he hallucinated that he had found his “true home” and broke into a stranger’s apartment through a window. He called his grandmother with the address, wanting her to visit or write. Police already had him in custody when we called 911. He was incarcerated for six weeks in the downtown Seattle jail. Matt and I had the surreal experience of locking up our personal effects, going through metal detectors and riding a clanky elevator to the seventh floor, where psychiatric inmates were housed. We told our shackled son we loved him, through Plexiglas. His eyes were not tracking. I knew delusions and hallucinatory voices were pulling him deeper inside himself.

Jail is often viewed as a better access point to services than an emergency department. Calvin’s case manager encouraged me to celebrate his incarceration. “This could be good news,” she exclaimed. “Maybe now he can get more help.” These words infuriated me. Somewhere around that time I learned that individuals with severe mental illness are 10 times more likely to be incarcerated than treated in state hospitals.

Calvin’s first incarceration for being sick was while he lived with us in Vancouver, not long after that night on our back deck. Unable to see his illness, Calvin leaned into mania. The highway beckoned. He loaded up with Halloween decorations, cat food and other random items but didn’t fill the car with gas, believing his own energy would be fuel enough. Out of gas with his car halfway onto the shoulder, he was discovered by a law enforcement of ficer who took him to a hospital for a toxicology test, presuming he was on drugs. Hospital staff determined him to be dangerously unwell and he was detained to a psychiatric facility.

Calvin’s spirit guides me.

JERRI NIEBAUM CLARK A MOTHER, GRANDMOTHER & ADVOCATE FOR MENTAL HEALTH

The court held a hearing related to the DUI charge and issued a bench warrant when he didn’t show up because of being in the hospital. (Explaining this obvious con flict to the court didn’t matter.) When he was discharged—still unwell —and encountered police, he was taken to jail on the bench warrant.

During that debacle, I joined a support group at the local af filiate of the National Alliance on Mental Illness (NAMI), which became the first place I felt solidarity. I started sharing my story in a NAMI Southwest Washington training, “See Me,” which spreads understanding about psychiatric conditions for first responders and others who encounter the mentally ill in their work. I found myself merging my journalism training with skills I learned judging speech-and-debate contests during Calvin’s high-school days.

As I found my voice, I started to network. A series of contacts led back to Kansas, and a kind NAMI Kansas director was the first person to explain Assertive Community Treatment (ACT) as perhaps the most evidence-based option for outpatient care. That smart tip was frustratingly difficult to apply, as were other snippets of advice that never manifested a coherent strategy. “Evidence-based” doesn’t mean available or well-funded.

Losing my son in such a tragic way has galvanized me to inspect key moments where something could have gone differently. I’m forced to relive our traumas as I unpack them for advocacy. Along the way I’ve decided that happiness isn’t my most important mission.

That’s not to say I haven’t met happy moments through the work. I’ve enjoyed connecting with grassroots advocates nationwide who are moved by their own awful experiences to speak out and demand change. We befriend one another through local networks and social media. Many have united around a pivotal book by D.J. Jaffee, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. Jaffee, who died in 2020 from cancer, derided systems that promote “mental health for all” over care for the seriously mentally ill.

I read Jaffee’s book while Calvin was in the Seattle jail. I struggled to find a specific direction for my own finger of blame. The governor seemed to oversee most systems that had failed Calvin, so I called Gov. Jay Inslee’s office.

I learned that Inslee preferred to meet with groups. About a dozen friends and I quickly bonded under the name MOMI and met with Inslee for the first time on June 26, 2018. Since then, I have been invited by public officials into work groups and press conferences. Calvin died during the 2019 legislative session, while I was actively testifying on various bills. Lawmakers sent flowers and mentioned Calvin during hearings. The governor has been kind and sent our family a personal letter. At a bill signing, he privately encouraged, “Tend your heart.”

When MOMI began, I sponsored several public forums that got press attention. Austin Jenkins, a reporter from a National Public Radio affiliate in Olympia, interviewed Calvin and me for an Aug. 27, 2018, broadcast. Calvin talked about his first serious suicide attempt, when he jumped from a highway bridge into the Columbia River, and he expressed disbelief that such an extreme cry for help was needed.

“Losing my son in such a tragic way has galvanized me to inspect key moments where something could have gone differently. I’m forced to relive our traumas as I unpack them for advocacy.”

Jenkins connected me with Steve Goldbloom, who produces “Brief but Spectacular” for PBS NewsHour. Goldbloom interviewed me for a segment that aired Jan. 11, 2019. On March 21, three days after Calvin’s death, anchor Judy Woodruff honored Calvin on the show.

My work to help scaffold mental health care and detangle it from homelessness and criminal justice has put me on legislative work groups, advisory committees, coalitions and more. The day after the second anniversary of Calvin’s death, I testified in the Senate Subcommittee on Behavioral Health. The lawmakers were considering a bill to improve the state’s crisis response system as part of implementing a new 988 behavioral health crisis line. The 988 number went live nationally to replace the hard-to-remember National Suicide Prevention Lifeline (800-273-8255).

Washington passed HB 1477 to establish the 988 system. I will press to participate in a work group that will oversee how that goes. My March 19, 2021, testimony included a key story from Calvin’s life: “In the spring of 2018, my son’s landlord in West Seattle called with grave concerns. Calvin was bizarrely confrontational with other tenants in the house where we paid to rent him a room. He had dug up the landlord’s garden and would scream and mutter in the street. They wanted to evict our son but also were kind people who wanted to make sure he was OK. The landlord asked me what she should do next. Should she call the county?”

In my testimony, I described the confusion about which number to call, what to demand, and how that entire process of “crisis response” took more than a week.

“The crisis system requires a severe level of illness,” I said to lawmakers, “yet responds in a slow, underserved and disorganized manner.”

The National Institute of Mental Health estimates that 5% of the U.S. population experiences serious mental illness (SMI), which severely impairs daily living. Common SMI diagnoses are schizophrenia and bipolar disorder. The 2019 data estimate that only 65% of individuals with SMI received treatment, and those numbers do not capture detail about treatment scope or outcomes.

Shortly after Calvin’s death, a great horned owl swooped low over my head and landed in a treetop nearby. We gazed at each other for several minutes before he flew away. In this grieving moment, I believed I was experiencing something spiritual. I told my cousins about it on the day of Calvin’s memorial service. At twilight, we stood in my backyard garden, which backs up to the wooded greenspace where I first saw the owl. A cousin asked why I believed the owl carried a message from Calvin. Because, I said, with awe and wonder, “He’s right there!” In that moment, a great horned owl flew by, low and closer than I have ever seen.

Owl iconography seems to find me. In a town hall to discuss mental health care access, an owl mural adorned a wall. A fellow parent giving testimony had an owl tattooed on her arm. Sitting down with a state senator, I noted an owl calendar in her office. I have the wisdom to know this is the story I am responsible to keep telling. Calvin’s spirit guides me. ∎

About the Author

JERRI NIEBAUM CLARK works from her home in Vancouver as a resource coordinator for PAVE, a Washington State nonprofit organization that supports families dealing with disability. She is grandma to two little boys.

About the Story

This story by Jerri Clark was oringally published by the KANSAS ALUMNI MAGAZINE. View the original publication and see more photos here: kansasalumnimagazine.org/magazine-article/my-sons-story

CHILDREN WITH SERIOUS MENTAL ILLNESS

ADULTS WITH SERIOUS MENTAL ILLNESS

TOO MANY SILENTLY SLIP AWAY.

Today, in the United States there are over 22,000,000 million people living with and suffering from serious mental illness – no fault serious brain disorders – with their loved ones suffering alongside them. Through the cracks of a broken healthcare system 1 in 10 CHILDREN and 1 in 20 ADULTS fall, with some never returning. We can no longer stay silent and still while so many suffer. Now is the time to speak out, stand up and together take action.

The National Shattering Silence Coalition (NSSC) Nonprofit united their voices for those with serious brain disorders to tear down the wall of silence and inhumanity killing their loved ones, families and our national soul. Please stay tuned for personal stories of their losses to preventable suicides. Learn what you can do to help ensure no more needlessly and silently slip away but rather receive the compassionate, humane treatment we all deserve.

SCAN TO LEARN MORE ABOUT NSSC. IF YOU OR A LOVED ONE IS EXPERIENCING A MENTAL HEALTH CRISIS, THERE IS HELP. DIAL 9-8-8 FOR THE NATIONAL SUICIDE PREVENTION HOTLINE

We’re still not recognized as human beings.

CHIEF OGIMAA ANISHINAABE KNOWLEDGE KEEPER, CHIEF OF FOOTHILLS OJIBWAY ON TURTLE ISLAND

ANISHINAABE ACKNOWLEDGEMENT

Ogimaa, or 'Jim' as he’s called, is an Anishinaabe Runner & Knowledge Keeper. He is Chief of Foothills Ojibway on Turtle Island. Hidden and protected from the colonized world in his youth, even in his childhood, Jim has lived a life in a legacy of service to his people and to Creator. He holds and preserves sacred knowledge that has been passed down for generations. It is this indigenous knowledge that must be protected for the safety of his people and the preservation of their culture.

The following is an excerpt from an exclusive interview with Ogimaa. You are encouraged to listen to the history revealed in the full podcast episode:

ALLIÉ: In addition to being Chief of Foothills Ojibway on Turtle Island, you are an Anishinaabe Knowledge Keeper. For those unaware, what is a ‘Knowledge Keeper’?

OGIMAA: Okay, there's two things there that are in your question. One is being a leader of an Ojibway First Nation and again, it would be a different answer in my language, but I'm trying to use the English language to explain what is a leader, a hereditary leader, and also the Anishinaabe language….. in the Anishinaabe as a language. We describe ourselves as….. the first people of the Turtle Island, in what today, they call Canada. Back in the days long time ago, when our people were put in this part of Turtle Island, we are known as Anishinaabe people….

The Creator or God, whatever his name is, he put us in this part of the world and the Ojibway people always lived in Turtle Island, because there was clans, the hereditary leadership began. The Creator gave us a responsibility to take care of the land, as the land took care of us for thousands of years, even before European contact. So, we always maintained and looked after the land because it's looked after us. That’s Anishinaabe, responsibility is to take care of the land and to work with others that might be in the Turtle Island.

So, a long time ago, to be a leader, you need to understand about the environment, to understand about God's spiritual creation of all things, you need to be able to lead a people in a good way, and a spiritual way according to the Creator himself. So, Anishinaabe, the word itself, is people that were selected in this part Turtle Island to lead the clans, according to the spiritual guidance… natural order of instructions, from God himself.

What they call Ojibway is protecting that leadership, which contains the hereditary spiritual leadership, and it contains the education structure. The education structure is to understand about the world, to understand the environment, to understand the spiritual, to understand the people, which is the human. That’s what to be a leader of a Ojibway Nation has maintained. So, that's how much I can explain my role being the hereditary leader, a spiritual leader, understanding the spiritual ties and the spiritual responsibility of the environment. We ran with that. This is what we had before. My people, maintained this connection and the natural order of guidance.

I'm just explaining what a hereditary leadership called as Ojibway. So, I have headmen . I'm a leader, I’m the Ojibway leader, but I have also 4 headmen. What the headmen are,… they’re the spiritual advisors to me. They know all the constellations the Creator has written. They know about everything that's connected to the environment and how we must work with that. It is a lot of responsibility for them, and that's what our leadership is based on, the spiritual ties to this part of the world, the Turtle Island. This is just that little piece answering your question about leadership.

“We white-skinned people (who have crowded the remnants of the O’Chiese Non-Treaty Indians from the good productive land, shuffled them hither and yon until in the desperation they were forced to seek sanctuary in the Foothills region of the muskegs, jackpine, ridges and myriads of mosquitos at the foot of the Rocky Mountains where they hope tat they may be allowed to pitch their tents and be unmolested as they carry on their vocation of making a living) ought to bow our heads in shame, and if there is any goodness and loving thoughts left in our hearts, we ought to not only petition our Government to set aside a suitable tract of land for their exclusive use, but we ought to see to it that “such” is done.” - Henry Stelfox

(Note: Henry Stelfox was a last Indian Agent in the territory during the formation of Canada’s Indian Act.)

Source: The Native Voice (December 1954)

ALLIÉ: Not only are you a ‘Knowledge Keeper’, you are also a ‘Runner’. How long did you have to run, Jim? Why was it necessary?

OGIMAA: We ran because before, we weren’t running from anything. Before, we are just living humans, as people, this part of the world, this part of Turtle Island. So, around 1494, something happened with our people. We had our own belief. We had our own ways of worshipping the same God that anybody does worship in this world, and we still do that today. Our people, around 1494, some were massacred, women and children while destroying our communities, our camps. So, where we fled from around ..it's known as Minnesota,… back then in our language, it was called Minnesotak. Not far from there, they call it Chicagonk. Today is known as Chicago. And some people came from where today is known as Mississippi.

So, anyway, one of my great, great grandfathers, in my ancestry, told his son to take the bundles, and to run with the bundles. These are ceremonial bundles, which are the archive we still have today. His son, took off to protect them. I don't know what happened to my great, great, grandfather, but he's buried down there somewhere by Minnesota.

Again, something happened …what they call the black robes caught up with the first runner so, this time, he sent his son whose name means who peeks around. The lookout, I guess, that looks out for people…..took off to protect the bundles going towards north at that time. He almost made it to.. Manitoulin Island in Ontario today, but then, it was just land. There was no Alberta, no Ontario, no United States, it was just Turtle Island.

And then from there, the black robes caught up with them again, forcing them to burn bundles, their ceremonial objects. Running from there, they took off, turning west. On the way, he told his son to take those bundles… that he's going to stall the back robes. And his son was, in our language we call i Pontak . Today is known as Chief Pontiac, and that was spirit horse, his son.

Chief Pontiac was part of treaty in Niagara Falls of 1763 and ‘64. around the time when King George reaffirmed that 1613 peace treaty.. So, anyway, it's about the spiritual ways of protecting our structures that have been here since time immemorial. That’s why we protect it, and people were getting destroyed, our people weren't recognized as human beings. So, a lot of things, our people ran from. They ran because, first of all, they want to protect their ceremonial objects and what they've always believed.

ALLIÉ: When people hear the word ‘genocide’, they think of lives physically taken. And while that is a horri fic part of it, there is also ‘cultural genocide’ in the form of colonization. In the past, more often than not, indigenous people have not been recognized or respected as they deserve to be. Human rights have been denied. Today, are things better or worse? From your personal experience, are the Anishinaabe people being fairly acknowledged?

OGIMAA: For us running, from all the things that happened, like people being hunted, people getting sicknesses, like smallpox…. the government didn't want to recognize us as human beings. That goes back to a time of 1494, fast forward to 2014, the government is still stuck in those years 1492, ‘93, ‘94.

Today, the Anishinaabe people are still not being recognized as human beings. That’s why all that systemic racism is happening, and that’s why the government doesn't even recognize us in our homeland, even though we signed that “peace and friendship treaty”… an agreement to coexist and to live on this land together. To enjoy what we enjoyed before European contact. We are still back in 1492 or ’93 (Doctrine of Discovery)… because the Anishinaabe people are not being recognized here in Canada in their homeland.

“The government doesn’t even recognize us in our homeland, even though we signed that ‘peace and friendship treaty’…”

“A cultural genocide happened…”

We can prove that we are actually from here, because God has written all the symbols, not only in the constellations. We didn't write those, he did. A lot of things were written about us on the land. So, if you Google Cypress Hills, you're going to see an Indian face on those hills, and if you look in those mountains, you’re going to see Indian faces. That's God's writing. And constellations are the same way.

The Canadian government refuses what is called our people, especially for those Ojibway First Nation, they're not recognized in their homeland, because we ran to protect our culture, archives and sacred ways. The government says, “We don't recognize you.” That means we're not recognized as human beings. So, it's not better. It's actually worse. At least we're not being hunted now. But what I mean worse…. is…. somebody that you recognize yourself and welcome them to your homeland, and for that visitor to turn around and say, “Hey, we don't recognize you now on your homeland. We don't recognize you as a people, or as a nation, or as humans.”

Today, we hear about all these kids graves being found…. they were forced to a school, by the government. Some people were hanged in 1885 because they refused to surrender their homeland, even though they share this land.. by international treaty… Government is still stuck in 1492 and ‘93, ‘94. We’re still not recognized as peoples in our homeland, which is very sad. Somebody that came from another country decides, “Oh, we don't recognize those people in their homeland as human beings.”

So, I don't know where human rights is for First People in their homelands. I wonder if that's happening in other parts of this world. But is it only in Canada that's still happening? This is where we're at today as we speak.

ALLIÉ: There’s no doubt that many changes are needed in our world. What is the most important change we need right now?

OGIMAA: I think the important change needs to happen. It begins from us, acknowledging each other, the way God intended to be, the way for us to take care of each other as family, as brothers and sisters. And to look at each other as human beings. That’s what began when the Dutch landed here in this Turtle Island, they knew nothing about this land, about this Turtle Island. So, they began to help them to live, to eat, even provided some clothing, even gave them a shelter, start teaching them about the land that they came to. They made that peace and friendship treaty back in 1613.

God said, “You respect my creation. You respect others”. So, back then already, we already knew that we must share this land that's called Turtle Island. So, they can have what we have here. Back in 1763 and ‘64 when King George reinstated the peace and friendship treaty back from 1613, my great grandfather was an instrumental part of that peace and friendship treaty. My great grandfather said, “These are people that we must look after and take care of, because they are human beings that have children and family.”

The Treaty of Niagara Falls, was about family, the Queen and her family, because that's the one that we made treaties with. Today, the royal family is still in Europe because of Chief Pontiac and other leaders that were here recognizing that family as human beings, as family. So, they made that peace and friendship treaty, which is international peace and friendship treaty of this island of ours.

So, what happened since then…. the government doesn't recognize some of these people that are part of the island. But we recognize anybody that comes from anywhere in this world, Same thing with King George of 1763, ‘64 ordered a royal proclamation for us to coexist in this land, to take care of each other, and to work together as people. So, that's right today, we still maintain that. But now the government is saying, “We don't recognize these people on their homeland.”

A cultural genocide happened…. We couldn't practice our culture for a long time. It was outlawed. (The Indian Act) Back in 1885, we weren't allowed in sweats or to have our pipes. Our children were taken away to residential schools so they cannot speak their language anymore, to take away who we are. They wanted us to be something else.

AwareNow Podcast

ANISHINAABE ACKNOWLEDGEMENT

Exclusive Interview with Chief Ogimaa https://awarenow.us/podcast/anishinaabe-acknowledgement

Today 2022, we're still not recognized as human beings. And this is why still, today, our people are gone missing, missing and murdered women. And nobody cares to do the investigation, even the investigation of what happened with the children. But our own people don't do those things. They go and to take away somebody's child, and for some reason, punish them because they speak their language. Today, there's a lot of people that want to get their language back. But it's very difficult because they already were taught and afraid to speak their language. So, systemic racism is still out there. And for us Ojibway, here in Canada, we are not being recognized as human beings, or as people. So, the government would say because of Columbus, we are called Indians. So, the government of Canada would say there's no Indians in Hinton or Jasper, other than first nations that allowed themselves being put under the Indian Act…. An Act that limited rights and still those are the only ones that the government recognizes. So, nothing much has changed. And that’s part of the human rights. It's a human rights issue.

As Chief of Foothills Ojibway, what I would like to see is, first of all, for us to be at the table when things are being decided what's good for us… and to be recognized as people, as human beings here in Canada Because it's very important, we recognize people that come from different parts of this world to our homeland. So, for that, I wanted to see... I guess need to see the government to recognize us, not only human beings, but to recognize us as people in the nation of this land. And that’s what I have been asking the government, but the government says, “We exhausted every angle of you guys to be recognized as a Ojibway nation in Canada.” But, I mean, they still don't recognize us as human beings. And that's still happening today.

People should recognize that we are a people that recognize anybody for our homeland. But as a runner, we ran because we want it to be in our homeland the way our Creator intended us to be. We want our people coexisting with our brothers and sisters, and we still maintain that today. That's why we ran to protect the archives of what was intended to be, how to coexist, how to share and how to work with one another in this Turtle Island. And that's why I keep going back to my great grandfather, Chief Pontiac, and the sons of generations following..who ran so all these things were handed down. But my age, I'm 66 years old, I got to see running. I am one of the runners of the bundles to keep everything intact about our own governance and our own leadership. So, today, very sad, the government doesn't even recognize us as people or a nation in our homeland. That's all I can say about that.

And one last thing I want to say is I know that historians won't be able to capture this, because we weren't allowed to practice our culture and our education. We weren't allowed to express who we are… and because of outlawing everything about our education structure and as people of this land. So, we couldn't talk about anything. I want people to know, things were outlawed, we want to talk about ourselves… we weren't allowed. And the fear tactic that happened, included no legal representation. We weren't allowed to get our own lawyers for the longest time.

So, thank you. Thanks for taking this time to talk to me. I always appreciate when you put things out there for us. ∎

TAP/SCAN TO LISTEN

PAUL S. ROGERS TRANSFORMATION EXPERT, AWARENESS HELLRAISER & PUBLIC SPEAKER

The not-so-pretty reality of the true struggle is found beneath the water line.

ICEBERGS AHEAD REFLECTIONS

Release The Genie Fact: When Alexander Bell invented the telephone he discovered that he already had 3 missed calls from the Genie.

Out of sight but not out of mind. For me, this always brings up that classic image of the iceberg. You know, the one where there is a small part of the iceberg above the ocean which people see. Representing being happy, successful, etc. The bulk of the iceberg is under the water line, which people can’t see. This is where the real hard work and challenges take place and it represents the reality. So in this article, the Genie is hunting icebergs!

Iceberg spotted on the port side (or left hand side to landlubbers). Last month, from 16th of October to the 22nd, was Invisible Disabilities Week. Like all awareness campaigns, it reveals the not-so-pretty reality of the true struggle is found beneath the water line. I can think of no better analogy here than that of the iceberg.

A huge iceberg has just been spotted off the starboard bow (The other left, or surfers’ left). I’d like to give a special mention to a group of amazing people who are mainly out of sight but never out of mind. They are the caregivers and support network for anyone who is suffering. I'm not just speaking about the professional leg, but also the volunteer caregivers being friends and family related to an individual. They are the unsung heroes who work behind the camera. These unsung heroes receive no or little training. It is not a job found in the advertising sections, or even applied for. The selection is based entirely on their emotional proximity and kindness to the individual.

I have received so many acts of kindness from my caregivers that it would be physically impossible to acknowledge every single act. However, it is always possible to acknowledge each act emotionally and in gratitude.

Sport is a great analogy to show the importance of a good team. My favourite example is Formula 1. You have the tip of the spear, who is the racing driver in the cockpit, trying to win the race with their driving skills. Races are no longer solely decided on the track, but also in the pit stops. A pit crew consists of more than 20 members, all specially trained with a specific task. They can change the wheels of the car and fuel it on average within 2 to 3 seconds. Something to think about the next time you go put fuel in your car at the pump! The car that starts the race is not the same car that finishes the race; parts are replaced by the team on the way.

Iceberg spotted dead ahead. (Both hands pointed straight). Jack and Allié McGuire recently con firmed that Awareness Ties has brought us over 831 individual stories of hope and light. This is an amazing statistic and accomplishment. Each story is a pinprick in the cloak of darkness of apathy, indifference and ignorance.

A great way to really spot icebergs is by making the invisible visible.

“There are two ways of spreading light: to be the candle or the mirror that reflects it.” - Edith Wharton

“Kindness is the only service that will stand the storm of life and not wash out” - Abraham Lincoln

AwareNow Podcast

ICEBERGS AHEAD

We play both roles in our lifetime. As the candle, we are the one with the idea, kind act and/or story. This light inside us helps to light the light in someone else.

As a mirror, we may not be the creator of the light, but we can reflect that light back to someone. This is the technology used in lighthouses, most flashlights, and your car headlights.

Have you noticed the effect of putting just one mirror in a room? How it gives the immediate impression of a massive enlargement to the room? Even the darkest lit rooms can appear to be bright. The mirror itself only absorbs a small part of the light, and reflects the majority. Just picture this, and also include yourself in it.

Imagine what 8 million (AwareNow monthly subscription) individual mirrors look like, all re flecting the light and hope of each story/candle. With this much energy of kindness and hope, there is no cause or story which is out of sight, out of reach or out of mind.

This following quote beautifully sums up that reflected energy:

“The best and most beautiful things in the world cannot be seen or even touched; they must be felt with the heart.” Helen Keller ∎

PAUL S. ROGERS

Transformation Expert, Awareness Hellraiser & Public Speaker www.awarenessties.us/paul-rogers

PAUL S. ROGERS is a keynote public speaking coach, “Adversity to hope, opportunity and prosperity. “ Transformation expert, awareness Hellraiser, life coach, Trauma TBI, CPTSD mentor, train crash and cancer survivor, public speaking coach, Podcast host “Release the Genie” & Best-selling author. His journey has taken him from from corporate leader to kitesurfer to teacher on first nations reserve to today. Paul’s goal is to inspire others to find their true purpose and passion.

Written and Narrated by Paul S. Rogers https://awarenow.us/podcast/icebergs-ahead

TAP/SCAN TO LISTEN

There was no question of what my purpose

STEVEN NISBET CEO & PRESIDENT OF SHIELDS AND STRIPES

was.

EXCLUSIVE INTERVIEW WITH STEVEN NISBET

SHIELDS AND STRIPES

IN SERVICE OF THOSE WHO HAVE SERVED

Did you know that 44 veterans commit suicide everyday? Our veterans and first responders secretly fight their own battles. On a mission, Shields and Stripes provides first line defenders the opportunity to heal visible and non-visible wounds, helping those we need the most to live meaningful lives in service to our communities. Steven Nisbet, who served nearly 16 years and medically retired in June 2021 from the U.S. Air Force as a Special Warfare Pararescueman, is the Co-Founder and current President of Shields and Stripes.

ALLIÉ: Growing up in Tucson, Arizona with a game plan to go to college and play soccer, Steven, after graduating high school and attending a local community college studying Astronomy, you decided to enlist in the military to become a pararescueman. That’s quite a shift. Please share the story.

STEVEN: When I was younger, I always wanted to hang out with my friends, and they all were going to college. A lot of them were going into college to become engineers and go work for IBM and Raytheon. They all had scholarships to universities and whatnot, but I didn't get that. Even though I wasn't really into engineering and stuff, I still just wanted

STEVEN: (continued) I’m a space nerd. I like astronomy and those kinds of movies. So, I started going to school for astronomy. As I went to a community college out there in Tucson, I started to look around at the people around me, and there were a lot of older folks around me. And I was like, this is not my demographic. I'm, like, 18 years old. I've got a lot more to do. Here's what I'm going to do. I'm going to join the military, and I'm going to do four years, and then I'm going to get my GI bill. And then I'll go to the university and catch up to my friends or I’d stay with this other path that was laid out for me, since I wanted to be on the same timeline as them. I took the ASVAB test and the recruiter came back and said, “You actually scored really high on the ASVAB, and you can do pretty much any job you want.” And I was like, “Well, what's the most challenging job intellectually?” And he told me it was a nuclear weapons apprentice. And I thought that was along the same lines my friends were going to go to, working for Raytheon and IBM and whatnot. They’re going to be building missiles or whatever they're doing. So, I'm going to find a way to them and go work for Raytheon when I get out. I had this pathway built up in my head, and as I selected that as my career field at the recruiters office, I walked out ready to start a new life and there was an army recruiter right next door. He was standing outside. He was like, “Hey, can I talk to you?” And I was like, “Sure. Not really trying to join the army, but what have you got?” He asked me if I ever wanted to be in the Special Forces. And I had never thought of that before. I had never considered myself to be in some sort of special operations career field.

I thought I had what it takes. I listened to what he had to say. I was like, “Well that sounds pretty cool. Can you give me some extra money to sign up and what not? Sound pretty wild.” Hold on a second. I don't want to be in the army. And then I walked over to the Air Force recruiter. I asked, “Hey, do you have a special operations career field in the Air Force?” And he goes, “Yeah, we got two. We got PJs and Controllers. But you won't make it so just stick with what you got. Too many people fail. It’s a 90% failure rate.” I was like, okay, this guy… “Well, give me the information. I'm going to put my enlistment on hold. Let me make a decision.” So then I got the information. I actually liked Combat Control more, and I was like, “I want to be a combat controller.” I selected that, and then I started training. I had six months of training before I went in. Took the PAST (Physical Ability and Stamina Tests) and they're like, “Alright, which one you gonna take?” And I said I thought they were the same. And they said with one you had to swim at the beginning and with the other you had to swim at the end. I was like, “Well, the one at the beginning because that's the way I've been training.” They're like, “Alright, you're going to be PJ.” I was like, I thought I was going to be a Combat Controller.” And he said, “Oh, they're the same thing. When you get to basic training, you'll figure it out there and you can select whatever you want. It's the same thing.” And I believed him, and it was not the same thing. And I joined to

“I started to normalize loss.”

STEVEN: (continued) become a PJ (i.e. Air Force Special Tactics Pararescueman), and then I went through basic training and then went through INDOC which is a completely different pipeline than Combat Control. However, it panned out to work out the way I wanted it to.

ALLIÉ: So, it's interesting to me that you were looking at a path where you could be in alignment with your friends and then the path sort of shifted as you went and you really were looking at something that was going to work for you and while it went a different way, it took you where you needed to be. Yes?

STEVEN: Yeah, ultimately, because somebody told me I couldn't do something, and so pride took over and said, I'll show you.

ALLIÉ: While serving in 10 combat deployments in Afghanistan, Africa, Iraq, Syria, and Yemen, you lost over 15 teammates to combat or combat related circumstances, what did this loss do to your mental health?

STEVEN: I lost my first teammate in INDOC in 2005 when I first joined. INDOC is the selection course for PJs, or it used to be. Out of 120 of us, only 12 of us made it. But during that particular course, one of the guys that was a team leader, he was a class leader, and he was my partner for what was considered our extended training day or ‘hell night’. So him and I were within arms length for 36 hours, just always with each other, carrying him. I was like 130 pounds. He was 220 pounds. And I'm carrying this heavy dude. We weren't winning anything, but we were still rocking and rolling. And so a couple of weeks after that, we had a pool session that he ended up passing out underwater, which is not uncommon. It's pretty common. I passed out underwater. However, he was 42 years old at the time. He had a pre existing heart condition. So, when he passed out, he ended up going into a cardiac arrest. They pulled him out and tried to do CPR. They got him back, got him into the hospital, and he passed away. That right there… that initial loss of when I entered into the military, this was within two months of me entering. I started to normalize loss. That's when I said, okay, well, this is what I joined for. I knew that this was going to come up. And then as each loss started happening, it was just ‘another one’, whether it's a friend taking their own life, a friend dying in combat, or a teammate dying in a vehicle accident. All of these people were just dying around me. And it was very normal for that to happen. But what I didn't notice was that it started to take a toll as far as the fact that I didn't really see… My family saw it before I did. I started to have memory loss because I would shut down my brain every single time we’d get into some sort of combat environment or training… I'm tuning out the gore that I'm seeing in front of me or the people that are dying around me. And that became so routine that I started tuning out everything. I would stare off in a space. I'd be pushing my kids on a swing, staring in a space, not really thinking about anything really, and then I'd be overly thinking about what the next twelve months is going to be – our training cycle, or deployment cycle, or alert cycle. So all of these things started compiling. I had nightmares that I didn't consider to be nightmares. I called them ‘recurring dreams’, but it was always me being attacked by somebody and I'm trying to shoot them, but the trigger just wouldn't go. And then finally it gets to the end, and it wouldn't fire. It was every single night that that was happening. They classified it as a nightmare. I was diagnosed with sleep apnea at 30-years-old. And then irritability, anxiety, depression, all of these symptoms that I didn't really analyze for myself over time. It really took my wife sitting me down and telling me that my two boys, who were nine and seven at the time, were scared of me. And that's when it really hit me where I could see all of this was really compounding. I was taking the stress and all the anxieties and everything… It was easy for me to explode. I was 0 to 100 really quick on them. Being home with the kids and the family, that environment isn’t what most of us are used to. And so that actually stresses us out more than combat does, which is wild… It's an environment we can't control because the kids start screaming and going ballistic and then we don't know what to do, other than to get loud because then they'll listen. Once my wife said that, it was a kick in the gut. It was a wake up call for me to ask for some help.

ALLIÉ: PTSD is real, and it’s real for so many. When it comes to veterans, first responders and law enforcement, you signed up to serve them with Shields And Stripes. Please share how the organization you co-founded began?

STEVEN: When I asked for help for myself, I was at a unit that had the resources to work on everything. Strength and conditioning programs, nutrition programs. We had all these coaches and specialists, physical therapists,

This became my purpose.

STEVEN NISBET CEO & PRESIDENT OF SHIELDS AND STRIPES

STEVEN: (continued) psychologists, and neuropsychologists… I could go to all of them and they can pretty much evaluate my entire body and mind to figure out all the things that were going on inside. So, as I worked on some of those symptoms that I described earlier, I started to feel better. I started to really enjoy what I was doing again. I was a team leader of a group of guys. I set up a climbing trip for us to go do some mountain rescue and some rock climbing, because that's part of our job – to do some mountain rescue stuff in really any environment. But mountain rescue was particularly something that was always fading. It was always a diminishing skill that we always had to work on. So we went out there, and it was also a morale trip. Five of us went out there and started climbing. It was beautiful. It was out in Boise, Idaho. And on the second day of climbing, one of our guys sets up a rappel rope at a 70 foot face. All of us are at the top. First guy gets down, kind of taking in the scenery, instructing one of our younger guys on how I like to build an anchor using traditional protection. The second guy starts to repel. He gets about halfway down, and then the anchor… the rock that was around the anchor shattered and failed. And so one side shattered, pulled out the anchor, and then shock loaded the other side, and that fell. And so the guy that was on the rope fell 30 feet, hitting some of the rocks below and bouncing off. And what we didn't anticipate was one of our other guys at the very top who was tied into that anchor as well. So the weight of our first guy that was repelling pulled the other one off at the very top. And so he fell the full 70 feet attached to the rope. He hit the ground on his back and bounced over to his face. I repelled down, and felt for a pulse, listened for breathing, rolled him over, felt for it again, and then had nothing. So we started CPR, and then just continued to work on him, eventually placing a surgical airway in there, and then also doing a field thoracotomy, or field chest tube without the tube, and ultimately worked on him for about 25 minutes, and then he passed away. So we never really got him back… And that was another teammate. That was another one down, another one that passed away. But I had been working on myself, going to counseling, and then this essentially was like the straw that broke the camel’s back. This was it. I was analyzing what was happening right in front of me. He had a wife. He had a two-year-old. His wife was pregnant… All of these things started compounding inside.

Ultimately, I pulled myself off of the team and worked on myself for two and a half months. This loss was very different from the other losses because we were talking about where we're going for dinner, what we're doing that evening… It was a low threat environment. We're not getting shot at. Everyone comes home. Usually, that’s the plan. And me being a team leader… I took the full responsibility of everything that took place. So as I pulled myself off the team, I worked on myself for a little bit. I came back as a team leader and went on a deployment. As soon as I came back as a team leader, it was very successful. Nobody got injured, nobody got hurt. We did what we needed to do and came home after about two and a half months. We were getting ready to deploy again, and the investigation for that accident closed out. It ultimately found that there's nothing that we could have done to change what happened or to change the outcome, but ultimately they found, somebody needed to be held responsible. And I was held responsible and accountable. So I was removed from my position as team leader there at that unit, and I was removed from that unit. And that unit is a whole notice selection course. It's the only place I wanted to be, the only place to do the missions I wanted to be doing. So that threw me back into a depression, back into having no con fidence. I had a piece of paper that I could show my psychologist, this is my fault. So, ultimately, if I was to take that, I was given 30 days to PCS (Permanent Change of Station) and then move somewhere else. And if I was given that, if I took that, I was going to end up moving to Las Vegas. And I saw the pathway there. I was going to drive myself and my family into disaster. So I chose to medically retire and continue seeing the resources, the therapist that I was seeing while I was there. But I knew at some point I was going to lose those. And so if I was going to lose those, what was I going to do then? I started looking up resources outside that are available to the veterans and the special operations community of veterans. I asked some friends what they did when they got out. And there was just a list of things that they were compiling together. I was like, how do you have the time for all of that? That sounds like so much work. There’s got to be a better way for a one stop shop that we're used to, but there really wasn't anything out there. So I was like, we got to create something then.

“I was analyzing what was happening right in front of me… All of these things started compounding inside.”

STEVEN: (continued) I reached out to Dr. Jennifer Burn. She had the same vision and she was trying to execute it. And she was doing a lot of the telehealth model. She also was in very early stage startup mode. I asked her if she could help me start this up. We started raising money. We started it up, and essentially replicated what I had at the unit to be able to provide that for veterans – all veterans. There are so many people out there that have no clue about something like this that saved me and my friends. They didn't know that kind of stuff existed. And there are other people in different communities that never had it.

My dad spent 30 years in law enforcement, and most of it was as a gang task force sergeant. And as I started to go through my PTSD symptoms, I started to realize that he and I were almost exactly alike as far as how we carried ourselves when he was my age and how he was with me as a child. I was like, “I'm exactly who he was.” And all of his symptoms were starting to present themselves as he is now older and retired; he's in and out of the hospital with different symptoms. It was an opportunity and a blessing for us to be able to bond over our PTSD symptoms. But I then wanted to highlight that these folks, these law enforcement and firefighters need the same tools. They need the same resources that I was given. We wanted to offer that to all first responders, all veterans and active duty members. So, we started that up, and we host individuals inside of a facility that we use. It's a pro performance gym that typically works with professional athletes. They go there for three weeks and receive strength conditioning, physical therapy and nutrition. They literally get meals handed to them. And then we fly in our occupational therapists and our psychologists. For three weeks they're staying in a five-star resort, and then when they leave there, they get another nine weeks of the same clinicians and specialists, but now they bring them home with a telehealth model. So, we include the family. It's three months total. We’ve run three cohorts so far. We've been able to change the lives of at least 18 of those individuals, with the majority of them having previous suicide attempts. So far, all of them are doing fantastic. We stay in contact with them and continue to try to reach out to as many as we can to help as many as we can.

ALLIÉ: You went from serving our country to serving those who have served. In transitioning from military to civilian life, has Shields And Stripes helped make that transition easier for you?

STEVEN: Yeah, I would say so. I think for a lot of the veterans that get out it’s hard. As a lot of people know, the previous reported suicide rates were 22… We lose 22 veterans a day to suicide. And then in a recent study that was done by Operation Deep Dive that included eight different states over a period of four years, they actually discovered that the numbers are probably double that. It’s probably more like 44 a day. And so when you look at why are they doing that? What's happening with them? The military does a really good job of transitioning people to look for a job… Go get a job. Here's how you should be managing your money. They have programs like that, and they're trying to figure that out, but none of them are addressing purpose. What is your purpose? If you look at anybody that joins the military, they're joining because they have a purpose. Most of them, I can't speak for everybody, but I would venture to say between 90 to 95% are joining because it's a serving of purpose. They have a higher purpose. There's pride in it. They're going to do something whether it's to fight the enemy, whether it's to live out a dream, a family dream, or something that's been passed down from generation to generation. So all these things have purpose. When they get out and they lose that sense of purpose, they almost feel like there's nothing left. They might have a job. They might be paying the bills. But what are they doing to change lives? What are they doing that they can be proud of? That's where you see them start to slip in this depression. For me, fortunately, as I made my way out and I started this nonprofit with Jennifer, this was that purpose. There was no question of what my purpose was. This became my purpose. And with the loss of Peter, being able to say every day that I am doing right and doing good for him, making

“When they get out and they lose that sense of purpose, they almost feel like there’s nothing left.”

AND STRIPES

“…there’s always somebody willing to help.”

STEVEN: (continued) sure that his loss wasn't in vain, that's my purpose. He was a very devout Christian. I lost faith a long time ago. And then because of his loss, I was able to rediscover it. So, I like to find purpose in that and try to spread his message that he would have wanted to share. In short, yes, I would say that starting this nonpro fit helped out the transition tremendously.

ALLIÉ: For veterans who feel lost and unsure of how to find their way back to themselves, what advice do you have?

STEVEN: Great question. When someone's lost and they're trying to find their way, there's always time. Time is always there. If you are in a moment when you are lost and feeling alone, and you don't think that anybody is there for you, I would give it time. And it will present itself, because you'll always have time. The second you make a decision to take away that time, you're affecting the lives of so many people around you… I've received several phone calls from a lot of people saying that they are going to take their own life, on the edge and trying to talk them down. And all it really ever came down to was that moment, a literal 5 seconds, maybe even shorter time than that of when that decision was going to be made. And if I talked to them for ten minutes, 30 minutes, or an hour sometimes, that went away. And so that was enough time for them to understand, okay, maybe this wasn't the decision. Maybe that helped them today, but then there's other resources out there to help them long term. We are not the only resource out there, Shields and Stripes, there are so many others that are out there, and they're all willing to help. And we are trying to build a bridge between all of them. So if somebody's ever truly down that pathway, there's always somebody willing to help. Just give it some time, and it will present itself. ∎

Introducing

STEVEN NISBET

Awareness Ties is honored to introduce Steven Nisbet as an Official Ambassador for Veterans Awareness. We are proud to welcome Steven as part of our family as we work to raise awareness and support for the causes that tie us all together. Learn more about Steven and his story: www.awarenessties.us/steven-nisbet

Learn more about Stripes and Shields: shieldsandstripes.org

THE WAKE UP CALL

What will it take for us to wake? What do we need to hear and see in order to understand the dangers found in our own homes in the form of prescriptions and potential addictions? Perhaps a story? In ‘The Wake Up Call, we share nine of them. Awareness Ties partnered with Families Against Narcotics to share real stories from real people in an effort to raise awareness about the opioid epidemic.

Chances are at some point in your life, you or a family member will be prescribed a narcotic pain reliever - Vicodin, OxyContin, Percocet, etc. - by a physician or dentist. Back in 2010, enough prescription pain medications were prescribed to medicate every American adult around-the-clock for a month. Yet many don't understand - or they underestimate - the addictive nature of these medications, especially if abused.

Unfortunately, today's drug addiction is no longer someone else's problem. With millions currently abusing prescription pain medications and thousands more moving on to heroin, be aware that the sad reality is it will probably touch all of us sooner or later.

The stories shared in ‘The Wake Up Call’ are chapters of people’s lives shared to create awareness, channel hope, and change lives. These are real stories from real people. From those who have lost someone to those who have saved someone or tried, these stories are a wake up call for us all. ∎

JOEL CARTNER LAWYER, AWARENESS TIES OFFICIAL ADVISOR & COLUMNIST

Layered into that grief is the fact that, often, that grief is invisible.

NO VICTORY

So it’s been a difficult month; some of that is self-inflicted work stuff, some of that is it rained here for six straight days, which my body does not like, and some of it was just life. But all of it has me reevaluating this thing that I was introduced to called ‘the Ferris wheel of acceptance’.

When we talk about grief, we talk about grief in stages, which would imply that you go through the stages, and then it’s complete, boom, you’re done. When in reality, it’s much more cyclical. It would be fair to say that I’ve been at the bottom of the Ferris wheel of late, and generally, that’s a really weird place for me to be.

At this point in my life, I don’t remember ever being told what my diagnoses were, and while my siblings will, accurately and fairly, tell you that there was definitely some misplaced anger at times over what was happening to me, I’ve never really been mad about it. I’ve never even really been sad about it most of the time. My general approach has been, well, nothing is changing about this, so I might as well be positive. There have been times when I’ve been frustrated because my body will not do what I want it to do, and there have been times when I have wanted a break from my body, but I never really did the big angry blowup rant, and I’ve never really mourned my situation in the classical sense. Recently, however, events have conspired to elide that concept of grief and wanting a break from my body.

A few weeks ago, I had a front-row seat to the approval of a medication for ALS. It was an incredible moment watching the ALS community getting a much-needed therapy that could better their lives, and it’s one of many examples I’ve seen in the last few months that reminded me of why I do what I do. But on a personal level, it was also a moment of profound sadness. Because while none of what I have will directly kill me, there isn’t a ton of research in any of those areas either. It’s at this point that I want to draw a distinction. I’ve accepted my diagnoses; it is a part of who I am. While I don’t necessarily long for a cure (that rabbit hole is complicated), I do occasionally mourn the complexity and pain associated with my circumstance.

Layered into that grief is the fact that, often, that grief is invisible. Having achieved acceptance in a broad sense can, to the wider world, erase the grief associated with having to continue to live with these circumstances. I was looking back over some things to try to get a mental foothold into this concept to write this, and I found something that I think crystallizes this dichotomy. I happened across my old college admissions essay. To describe my disabilities, I used the phrase “a war with no victory condition.” With the benefit of hindsight, I’d like to modify that quote slightly, “a silent war with no victory condition.” Because as I’m sure many can relate, living this life is a never-ending process, sometimes people see the battle raging and step in to help, but without the battle’s loud clangs, bangs, and shouts, it can often go unnoticed. In short, grief can be a lonely enterprise. At many points during the last month, I found myself negotiating with myself for that little bit extra, one more step, one more hour, one more burst, and in the case of the six days of rain, one more day. Many times this month, I have wanted a break from my body.

“Acceptance is a constantly evolving process…”

The fact that my end to these articles tends to happen in the space of the need for community and to tell these stories to the wider world in the context of the need for understanding is often a frustrating state of affairs for me. I want a more concrete solution. Here, however, that need for understanding sits better with me. Throughout this month, I’ve had one friend check in consistently with a “you’ve got this,” or a “hang in there,” or, most notably, an “I believe in you.” He was my anchor this month, and speaking from experience, sometimes you really only need that one person. So, to my people out there who are friends, family, or otherwise are connected to someone with a chronic condition, (1) check in on your chronically affected folks occasionally. Acceptance is a constantly evolving process, and who knows what will make the cracks show.

Lastly, the idea that all it takes is one person checking in made me think of the following quote, and it’s been following me around a little:

"I am here because when all else fails; when all the other mighty gods have gone off to war, I am all that’s left. Home. Hearth.” (2)

Home and Hearth, and as Allié and Jack are so of found saying, Love and Light. ∎

(1) This is NOT antagonistically directed at anyone I know.

(2) Rick Riordan, Percy Jackson and the Last Olympian

JOEL

CARTNER

Lawyer, Awareness Ties Official Advisor & Columnist www.awarenessties.us/joelcartner

JOEL CARTNER is a lawyer and public policy professional with Cerebral Palsy Spastic Diplegia and Retinopathy of Prematurity. Cartner has a background in public health, disability, and education law and policy. He received his J.D. from Quinnipiac University School of Law and his B.A. in Political Science from the University of North Carolina Wilmington. Cartner currently lives in Washington D.C. where he works as Director of Access Policy for the Muscular Dystrophy Association. In this role he works to ensure greater access to therapies, devices, insurance, and specialists for those with neuromuscular diseases by conceiving of and enacting public policy efforts.

Holding the in between is me acknowledging that I have to hold space for the joy of the future and the pain of the past.

HOLDING THE IN BETWEEN

Deoné Newell is a Navajo/Black life coach, film producer, climate activist and BIPOC wellness advocate. As a woman who hails from the Navajo Nation, Deoné has dedicated herself to being a vessel for ancestral healing and its forgotten wisdom. She aims to make wellness practices more accessible to BIPOC women while helping to empower them to be catalysts for cultural change by stepping into their inner strength.

ALLIÉ: You were playing a flute carved by a Diné relative. This was my introduction to you in a post on Instagram where you spoke about ‘magic’. In regard to ‘remembering the future’, you share this: “We have the ability to speak the language and sing the songs of the Great Mother. It simply takes remembering.” Instantly inspired, I’d love to know the story of the magic that is you. Can we begin with your heritage?

DEONÉ: I was born and raised on the Navajo reservation. I will just introduce myself and Dinékeji (Navajo). And, we usually start with our clans - starting with our grandmothers’ clans. So, my father's mother and father and my mother’s mother and father. And, we say Yá'át'ééh, which is hello. Yá’át’ééh Shí éí Deoné da shijíní. Táchii’nii nishlí. Nahiłii bashishchíín. Bilagáana da shí cheii. Nahiłii da shinalí. And, my clans are Nahiłii, which is African American or black. And Táchii’nii on my mom's side. I was raised on the reservation. I lived there until I was about eight or nine, and my parents had split up. I spent a lot of the rest of my life in Northern California living with my dad and spending my

Our ancestors who passed on this knowledge are seeing that their descendants now don’t have access to the practices that they grew up with.

grew up going to pow wows,

DEONÉ: (continued) experience, not realizing that not many children have exposure to the Indigenous reservations of the continental US. I grew up going to pow wows, seeing the medicine man regularly, watering corn in the corn field. Oh, sheep herding since I was like - since I was old enough to walk. Sheep herding with my great grandmother, helping her card wool and pick plants to dye the wool, and watching her spend hours at her loom, where she would just listen to KTNN, which is the Navajo radio station. She's listening to pow wow songs and stories and everything's in Navajo.

And at the time, I was going between this western society in California and then going back to the Rez, it felt like just this really difficult transition because as a teenager, you're thinking of all the things that you don't get to be a part of in the city. Right. You're like, I'm stuck here during the summer. We have no Internet. We’ve got satellite TV. When I was in middle school, there was no cell phone coverage. and it was dif ficult to enjoy my time at home. I really just thought I was missing out on so many things that teenage friends of mine were getting to experience. Like AOL. I know MySpace started to become popular. But those are things that I didn't get to have during the summer because I was back on the Rez and at that time.

You don't appreciate how beautiful it is to have that communion with Mother Nature. And it just feels like something that is a burden because you're being cut off from so much, not realizing it was actually a blessing to have that silence. And, through the years, I had gone to college in Northern California, then went to ASU. My mother always had these conversations with me like, you should really come back and why don't you work on the Rez? You can work in public health. And there are so many times where I was like, I'm seeing the disparities on the Rez, and I know it's so difficult for me now or, it would be so difficult for me to get a job.

Unemployment is about 40% - even worse now since COVID. I never really understood that at the time as a young adult. I went to college in Northern California and then finished at ASU. I had actually been encouraged to go into business by my dad and step mom. After years of me being in the tech space and marketing - I realized I actually wanted to have a more artistic career path and do something that mattered. Just three months after I quit my job to go into filmmaking, COVID hit. I moved back home during the Pandemic - the world was shut down. I realized my family back home really needed me because my mom had a nervous breakdown.

I just started to see these glaring issues on the Rez and the injustice that I was experiencing day in and day out. It was pretty much impossible for me to find work there. I ended up doing some remote consulting for friends, startups, and I had to drive 20 minutes from my house to get on Zoom and tether from my phone signal that would drop every five minutes. And that's when I realized that, oh, my gosh, my sisters. After the Pandemic started, when schools were shut down, they were forced to do homework in the parking lot at McDonald's, because that's where they had WiFi.

As a person who was very conscious about what I was eating prior to moving back home, I realized there was no organic food in our local grocery store. The cost of the groceries is much higher than I expected. The food available is all processed. I was pretty hardcore vegan - all plant based. Couldn't find things like quinoa and tofu in the stores. Then I started thinking, it is insane to me that all of these people are here, fighting to get in line for these five or six fast food restaurants. And the grocery store is stocked with things that are not that healthy either. So it's like the lesser of two evils. And then if you think about families that don't have that much time on their hands after work, they've got a lot of kids to feed, they don't want to spend time cooking. They're going to the fast food restaurants that are plaguing the reservation right now.

“I

seeing the medicine man regularly, watering corn in the cornfield.”

DEONÉ: (continued) I just started to process so many things that I didn't notice as a kid. My mom was a single mother of six. She had to overcome so much just to survive and even more to help us preserve our culture. She allowed us to have access to it and helped us preserve it. She encouraged us to go to powwows, continue going to ceremonies, go to the medicine man, help our grandmother as much as possible - be out in the sheep corral helping her with the sheep. Every time I went home for summer, that's pretty much what you knew you were doing for the summer. You’d be out in the yard. It was just so weird to think that my friends in California were going to summer camp.

ALLIÉ: Being a future ancestor… The way you speak about the past, the present and the future, when you say, “I am holding the in between,” what are you holding, Deoné?

DEONÉ: Holding the in between came to me while I was thinking about how surreal it is to see this lineage that I'm carrying within me and knowing that everything I do in this present moment is affecting generations for ages. I think I talked about it in that post as well. Setting the standard for future joy. So many of my ancestors, I get to thank them for the connection I have to Mother Earth and the land. I want to be in communion with all of our relations. However, there was so much oppression that they had to overcome. That epigenetic trauma is still present within me.

Holding the in between is me acknowledging that I have to hold space for the joy of the future and the pain of the past and say, “It's up to me to create new traditions. To create new patterns within my DNA. To give myself the space to mourn the loss of what they didn't have. In addition to celebrating the joy of what I get to step into.” So, that's what I feel like holding the in between is.

I am also a spiritual person and I have seen so many incredible things just from being with Mother Nature and tapping into this innate desire I've always had to be outside and in the elements and in spaces far away from the city, and having the privilege of being able to go back home to acres of land that my great grandmother gave to us that doesn't belong to anyone else. We don't have neighbors when we step outside. And as a kid, I really hated that. Now, as part of embracing the younger part of me who didn't know enough at the time and didn't know what a gift it was to have that accessible to me - I’m also celebrating the joy that I have now and how excited I am to continue that lineage of being in communion with Mother Nature.

I said something about “The Divine witnessing itself.” That really resonated with me. I don't know if I heard it or just felt that as I was making that content. I believe I am fully embodying the Divine while also seeing what the Divine gets to do in me.

ALLIÉ: This past summer, you shared a ‘reminder’ in a post of yours that you are in fact not a strong black woman. That resonated with so many, including myself. Why did you feel this reminder needed to be shared?

DEONÉ: I love that post. Thank you for reminding me. I have gone about much of my life really trying to be the person who has had it all together. I don't need help. Or, I've got it. And really pushing vulnerability away because it's almost like BIPOC women - especially black and indigenous women have this… It's not a burden. But it is kind of this burden upon them from a young age that you're supposed to be strong and resilient like your ancestors or your parents. Your grandparents did so much to get you here that you don't have the luxury of being vulnerable. The luxury of giving up or taking a break or having rest even or taking breaks from not working hard. It's almost as if working hard is the default, and being strong is the default. And it gets so tiring when you wake up and you're supposed to be in that strong mode, or that, character of strength, like, what if I just want to be soft? What if I just want to be vulnerable? What if I do need help? And the reminder I posted was to tell people that women in your life who are Black, are not

“Holding the in between came to me while I was thinking about how surreal it is to see this lineage that I’m carrying within me and knowing that everything I do in this present moment is affecting generations for ages.”

DEONÉ: (continued) strong. They don't always want to be. They want to just be vulnerable and soft, and they want to be okay with their needs. And that, for me, really resonated when I heard the audio and something, I was like, oh, this is exactly what I'm feeling. So many days where I'm just, like, reach out to the strong Black woman. Reach out to the Black woman in your life. Reach out to the Indigenous/women of color who are systematically marginalized, have additional barriers to overcome within our system. Not just the patriarchy, but racism and capitalism that also enforce those underpinnings.

ALLIÉ: Decolonization. Let’s have this conversation. Specifically, I’d love to dive into your thoughts regarding colonization regarding wellness, and let’s include reproductive sovereignty.

DEONÉ: My wellness journey really started during the pandemic - as it did for many people. I had gone to yoga classes and didn't really get in touch with this part of myself that was really in touch with or had this connection to Mother Nature. And all of my relationship was very much like, oh, yeah, I already know what that's about, because I grew up with it. I was singing and going to the Medicine Man. Like, I had really chalked it up to performatives; these are things that you do and not, what you are, and embodying those practices is very different. I had no idea what that meant, at least consciously, right? I had experienced it, but I didn't really look at it and question what it meant so I could describe it and help other people to understand it, because you can know something very well, but you only really know it if you can help someone else understand it, you know?

That started happening during the pandemic, where I was like, whoa, all of these things that have been innate in myself are starting to express themselves. And I don't know what that means or how to translate this for other people, but I'm seeing a discrepancy in how these spaces are being set up and what's actually happening in them. The way that they're being advertised; reconnecting, rematriation, divine feminine, get in touch with your soul mission type of language. And then when I was stepping into these spaces, they seemed commodi fied, a little bit token-like, appropriative and also harmful in the ways that they were imposing or co-opting capitalism and neo colonialism. And I say ‘neo’ because it's like a lot of Indigenous communities right now around the world are actively still under colonial oppression. It's just not direct, right? It's not like this militia is going in and imposing their will on the people. Instead, they are extracting resources and then forcing these Indigenous people to then have to sell a lot of the things that they have, to get access to other things that they need to buy. So that's like this political rant. But on the wellness side, I noticed that there's a lot of mostly white spaces in the wellness world beyond your typical yoga class. Breathwork classes, cacao ceremonies, etc. - all white washed. Health and wellness spaces that are supposed to be conscious and beneficial for the collective. But you start to see they have no one in the global majority present, and I say ‘global majority’ as people of color. They're also cost prohibitive to people of color. Oftentimes there are people who are not of color leading out these ceremonies and these wellness spaces. So, it's like none of the individuals who originated these practices are actively teaching them. They're not getting the money from them. These Indigenous communities are being ravaged, and certain people are going to these spaces, picking up all the tools and tricks, and buying up all of the commodities. They are then going and reselling them for a higher price. Cacao is one of those products that's being resold in the US and all over at a premium. I’m thinking of other products like hapé and a ton of Indigenous practices and even ceremonial practices that are being colonized. And that, to me, is hurtful, because it means that our ancestors who passed on this knowledge are seeing that their descendants now don't have access to the practices that they grew up with. They're now seeing that the way you're supposed to have access to them is through paywalls, which is just the antithesis of all the things that I grew up with on the res, where when you see the Medicine Man, you know that everyone in the community is taking care of him. He doesn't need or he should not want for anything or be starving because his community is taking care of him. And it's not like he shows up to your house and you give him $500. It’s not like in order to have this blessing or be saved from this ailment, you need to save up enough money to see the Medicine Man, you know? And that's kind of what's happening right now in the wellness spaces. It's being really co-opted by capitalism. That's just a result of colonization, and it's turning it on its head, because traditionally, as Indigenous people, we have always had these practices in our day to day life. So it's not like it's separate from your job or the community role that you have. You're always in communion with that ceremonial space. So in order for us to decolonize it, we have to realize… Let's take away the paywall. Let's stop appropriating. Let's invite more BIPOC people into these spaces and actually create more equity. Nobody, or very few BIPOC people I know, are able to afford a $500 weekend retreat, or even a day long retreat. That's how expensive some of these are. So when I talk about decolonizing, it's giving access. It’s also land acknowledgements that need to be a part of that. I think a lot of people don't understand the land that they're resting on or conducting these ceremonies on is

DEONÉ: (continued) sacred Indigenous land that is no longer in the possession of the original caretakers of that land. So there are so many facets to decolonizing… It's definitely a lengthy conversation that I'd love to potentially write about and create a longer piece. It's very intricate as well. There's the capitalist component to it, and then there's not really understanding what Indigenous lifeways are aside from capitalism, and then creating the equity within those spaces. How do we return this back to the original caretakers? Where's the reciprocity element, since a lot of these lands are locked forever? Can we start to return some of the benefits back to these people who are alive today?

And then the reproductive part... I think it was really interesting to experience this year. Because as a woman, as a woman of color, as someone who grew up in a community with a sense of what it's like to know that reproductive care is supported at the community level. It was really profound, because you're seeing what's happening in Western culture and you're realizing this is not the way our ancestors intended. This reproductive sovereignty has always been a way of life. I got a lot of flack for this because I had posted a piece earlier this year called ‘Abortion is Sacred’. And I wrote about a story that my great grandmother had told me about Indigenous ways of conducting abortion and how it was honored in a ceremonial way. It was always up to the woman. This was not something that was imposed by the community, and, ultimately, it was her choice. Regardless of anyone else's opinion, this was always supported in the community, and reproductive care was supported in the community. It's interesting because it's actually still done to this day for Navajo girls. When I was younger, I decided not to have this type of care because I was embarrassed. What happens to this day is as a girl reaches puberty and steps into womanhood, she'll go through a ceremony that's four days long with her family and her entire community. Girls will still get their homework sent home for them for the week. So they're excused from class and they go through, they'll have a Kinaalda ceremony. And that's a really sacred time that is revered by so many in the community. It's like a rite of passage. It gives you this way of understanding womanhood. I got to experience that ceremony during the pandemic when I was back home with a family member. So that post was just to remind people that our ancestors were able to support one another and they really encouraged us to allow women to have that bodily autonomy.

ALLIÉ: Sovereign is a documentary and a project designed to highlight the injustices of food insecurity on the Navajo Nation as well as spread awareness for the need for a healthy food source in a community that currently has to drive an hour to get food at the nearest grocery store. The food insecurity on the Navajo Nation is an issue that’s been unseen and unheard by most. Please share about this film project and the reality of this very real injustice it's about.

CLICK, TAP OR SCAN TO WATCH NOW

DEONÉ: It started when I moved back to the res during the pandemic, I want to say the middle of 2020. And it started with my own experience of being a pretty hard core vegan at the time, plant based. I noticed that when going to the one local grocery store, there was no organic produce available. There's no organic produce in many grocery stores on the res, and the food that is available is highly processed. So, the de finition of a food desert is a place where food access is very difficult, and the food that is available is highly processed. So it either takes families a really long time to drive to places to get food and they have to spend money and gas. Many times families don't have working cars to get to the store. And then if they do have access to anything, it's poisonous. So I realized this was happening as I was back home, and I said, how am I going to keep up my diet? I'm going to starve. The other thing was, I noticed what was readily available was fast food. Taco Bell, McDonald's, Burger King, KFC… all of these restaurants, there's a huge cluster of them by my house. And at the end of the work day, they have lines around the block, like 20 cars in each fast food restaurant’s drive thru line. So that was incredibly horrifying to see. And I'm thinking, what are people eating? How is anyone able to survive like this?

When you're thinking of depression, alcoholism, drug addiction, so many other things that stem from systemic injustice – a branch of that goes into food insecurity. And so the things that people are dealing with… No wonder people are feeling sick. No wonder we have such high rates of diabetes. I think it's something like one in three Navajos between 25 and 35 has diabetes type two. I think it's 35%. That's a huge percentage. I want to say it's ten times the national average. So I just started digging and reading some statistics, and I actually have family members who have died from cancer, diabetes, all types of ailments. And as I started researching, I wanted to just talk to people in my community. I said, what are you eating? What's your typical week look like? I interviewed my uncle. He's got four kids at home. My youngest cousin at the time, she was 19 and had just had surgery to get gallstones removed. And I'm like, that's something that doesn't happen to someone until they're like 60. How is a 19-year-old getting this surgery? I started researching and then realized the history behind it is really because of what was given to so many

AwareNow Podcast

HOLDING THE IN BETWEEN

Exclusive Interview with Deoné Newell https://awarenow.us/podcast/holding-the-in-between

DEONÉ: (continued) natives at the time. A lot of us think of rye bread as an indigenous food. Traditionally, if not. We didn't actually harvest or cultivate wheat until colonization. There were over 400 plants that Navajos speci fically used. They were subsistence farmers. They foraged and also grew their own produce, like the Three Sisters were really popular. That’s corn, squash, and beans. Those were things that I grew up with and knew that you could eat things that came from the garden. And yet so many families had smaller and smaller homes, with less and less land in their yards. So, they have just gone for convenience. So, the documentary is really a deep dive into a community that's 40 minutes away from mine. And they have to drive about an hour to pass through my neighborhood and then get to the store that's a little bit closer to me. And what they have access to right now is a 7-11. So, you know, that's like Slurpees, Twinkies, chips… And there are four schools in that neighborhood. It just really blew my mind that nothing is being done. And in the film, I want to focus on not just the problem, but the solution. And I'm trying to figure out subsistence farming and regenerative agriculture. What farms are actually in this area that we can source produce from? Maybe it’s having a wellness or farmers market weekend to give people access in that neighborhood.

ALLIÉ: For those who feel disconnected from their ancestors, seeking roots and grounding, what advice do you have? What’s the first step to reconnect?

DEONÉ: That's a question I've been challenging myself to attempt to answer as someone who has had the privilege of being connected to my culture on my mom's side, and on my dad's side, that hasn't been the case. So, as a Black American, I did a 23andMe test and was able to trace my dad's roots back to Ghana. So his bloodline is half Ghanian, and then his father was Creoul from Louisiana. So, there's a ton of rich cultural heritage there that I am not connected to at all. It really started with me doing a 23andMe rabbit hole adventure… I'm probably going to just go to Louisiana, because my great grandmother moved west during the Great Migration when she was 19 and moved to California. So she spoke Creole when she was very young, and I got the privilege of learning some of her recipes – gumbo and chicken cacciatore. I'm really blessed to have those bits and pieces of my culture there. But when it comes to the Black and Creole side of my family, I really have been struggling to reconnect… I’ve also noticed that being in communities where I feel the strong resonance and a strong connection has been so powerful, where I still need to sit at the feet of elders. I still need to be in spaces with medicine men and women. I still need to learn what it means to be an ancestor later in my life. And that means first being at the feet of ancestors now, of elders in this space and this timeline. So that's been really important – being around elders and reconnecting in a physical space. It’s then saying, what would it look like if I took a trip back to Louisiana or even Ghana at some point in the future. It’s saying, I have this last name. Who can I trace this back to? Connecting with Ghanian friends has actually been really powerful because I have a lot of African friends in LA. Just being in proximity to that culture and asking if I can sit in that next family gathering where they're cooking traditional foods, it has been really powerful.

ALLIÉ: I love the point that you make about having that physical connection with your past. And like you said, you did the research. You did the work. What an exciting journey, right? To say, let me explore ‘me’. To not be afraid, not be frustrated, not to be stressed, but to look at it as a sort of expedition within yourself. I think that's something that we should be excited about, not afraid of. Thank you for sharing your journey, Deoné. Thank you for sharing your incredible words. Thank you for helping all of us become a bit more aware now. ∎

Learn more about Deoné on her site (www.getdeone.com) and follow her on Instagram (@blk.native).

TAP/SCAN TO LISTEN

Stigma is about labels…

SCOTT CARPENTER PRODUCER & DIRECTOR OF BEAUTIFUL DISASTER

Original Artwork by: Selena Carpenter

INTERVIEW

BEAUTIFUL DISASTER

A BRILLIANT DOC & DEEP TALK ABOUT ADHD

Scott Carpenter is the producer and director of ‘Beautiful Disaster’, a documentary that serves as his thesis on the intrapersonal communication, emotional regulation, and influence of culture for adults with diagnosed with ADHD. Equal parts bold and brilliant, the film brings ADHD front and center with real accounts from real people living with and discussing the condition.

ALLIÉ: Diagnosed by your son’s pediatrician at the age of 43, you ignored the diagnosis for 6 years. You began your journey looking for ways to use virtual reality to help teach children with ADHD. With the more research you did, the more you learned about yourself. What did you first learn, Scott?

SCOTT: That I didn't differentiate between my symptoms and myself as much as I thought I did. Like what were my cultural beliefs and what were my feelings? Why did I believe the things I did about myself?

ALLIÉ: You started out wanting to use technology to help kids with ADHD talk to themselves. Why was facilitating a conversation between a child and themselves your objective? What was it about self-talk that made it a focus?

SCOTT: Yes, this was my objective. Self talk reinforces our beliefs. It’s how we decide things. It’s how we build our authenticity, which is what we compare our situations to for context. It’s how we build an authentic self and decide what we do, where we do it, and how we do it.

SCOTT CARPENTER PRODUCER & DIRECTOR OF BEAUTIFUL DISASTER

ALLIÉ: For those unaware of what our ‘executive functions’ are and why they are important, please share.

SCOTT: Our executive functions are like our corner office. They are the functions in our brain that control what we do, how we think, and how we act. They are facilitated through self talk or intrapersonal communication. And that whole process is difficult for those with ADHD. So, it’s functions such as motivation, emotional regulation, impulsivity, and self-reflection. The executive functions are how humans process and decide things and also how we build an authentic self.

ALLIÉ: When it comes to ADHD, there are a number of opinions. Personally, Scott, is it a superpower, kryptonite, both or neither?

SCOTT: It's kind of both. So something like ‘hyperfocus’, which is really about perseverance, can seem like a super power but it’s really the inability to disengage. So, when that’s pointed at something productive or good like feeding off our anxiety to finish a task then that can seem like a superpower because we can hyperfocus and achieve these things very quickly. However, if that hyper focus is on something maladaptive, then it really is more like kryptonite, in my opinion. Because it is essentially the anxiety driven dopamine addiction that drives that. For example, ADHD adults are generally calm and more focused under pressure, because the more stimulation we have in our brains, the easier it is for us to think. Additionally, besides anxiety being harmful in general, it’s not something we can control. It’s really inhibition… We can’t stop doing the tasks that are providing us with the rush. Conversely, if we don’t have that anxiety about a task, we can become time blind and unproductive until we do, like leaving an important task to the last minute, which of course comes with consequences. So, how is that a superpower?

CLICK, TAP OR SCAN TO WATCH NOW

“Besides anxiety being harmful in general, it’s not something we can control… We can’t stop doing the tasks that are providing us with the rush.”

ALLIÉ: In your brilliant film, Beautiful Disaster, it was this fact that first brought me to tears. Children with ADHD hear 20,000 additional critical or corrective messages before their 12th birthday than neurotypical children. As parents, teachers and adults in general, where do we start our own course correction regarding the messages we give children with ADHD?

SCOTT: It’s communication, understanding, and as you said earlier, holding space for them to make mistakes, educating them on their challenges so they understand what they are, so they can realize for themselves and recognize the missteps. It’s also stimulating conversation and knocking down stigma. Listen to them, look inward. Search for meaning in yourself and others. Promote acceptance.

ALLIÉ: In the conclusion of your thesis documentary you say this,”As ADHD adults, it’s important that we recognize that our authentic self is someone who wears masks, and we are constantly in the process of making masks in order to feel authentic.” When do the masks come off? Or are they revolving permanent fixtures?

SCOTT: I believe that they are constantly revolving, as they are for neurotypical people; however, I believe for those with ADHD and some other divergent disorders, it’s hard for us to stop the voices, to let the social identities go when we are alone. It’s hard to differentiate between what’s cultural and what’s authentic. And that constant impression management can be destructive and lead to shame. It’s the constant questioning, self judgment, and the result of that judgment. Even by ourselves, I think we are always stuck in that conversation in our heads, falling back on our own self bias for protection. We’re frequently unaware because so much of that “conversation” happens at the subconscious level. We are not even aware, until the consequences of those things come to get us.

ALLIÉ: The conversations curated and captured in your film will result in your audience’s additional conversations about ADHD. Do you believe it is communication through conversation that is our best bet for removing the stigma surrounding ADHD?

SCOTT: I do. Stigma is about labels, and the harm comes from embodying those labels. Eventually we believe those labels. We are constantly trying to find that balance, shifting and morphing, trying to fit into that gap between ourselves and culture. Conversation and communication is the only way through that, in my opinion. Which is why organizations such as yours are so important… so that we question things, our beliefs, our opinions. It’s so important for society, culture and ultimately our future as a species. ∎

“We are constantly trying…to fit into that gap between ourselves and culture.”

PROVIDENCE BOWMAN AWARENESS TIES COLUMNIST

You will not find growth in abandonment.

Photo Credit: Autumn Bland

SIT NEXT TO ME A REFLECTION OF ME IN MOMENTS

Mindfulness can be brought back to and broken down into moments. Pieces of your days. Lessons of our lives. Anecdotes you have written down. Thoughts in your mind. Heaviness on your heart. I try with all my sovereignty to set time aside to reflect on those moments.

I would like to share some of those with you in no particular order and with no particular meaning. Bites of my brain, pockets of peace, freeze frames of vulnerability…

“I think you loved me more than you took the time to know me. I always felt like you wanted to love me more than your heart was capable of expressing. You wanted someone's arms to embrace you and someone's chest to hold your heavy heart and mind on. I was an educated, sturdy bookshelf with just enough dust and wear. You wanted that more than you wanted to know the ebbs, the flows, the depths and the blues of my eyes. There is no castigating someone who did not love someone wholly, but sometimes I wish there were.To be loved and broken into halves is more onerous than a vast hard handed ocean of truth sitting at your feet. Our connection was a conglomerate of halves and wholes; if and when; here and there. Love me to pieces; do not love me and leave me with the pieces.”

“It is galvanizing to think of the ways that I would betray myself to love you. It is a self destructive act of tribulation that the raconteur in my mind seems to be unapologetically on your side. It is torturing that I know that I would follow you to the end of what ounce of me I have left.”

“There are many people that are going to remind you of your cold heart. When I sit outside in the cold, and my outsides match my alleged insides, I am reminded that is not me. That I once again have let the words of others once again surreptitiously make their way into my warm heart.”

PERSONAL STORY BY PROVIDENCE BOWMAN

AwareNow Podcast SIT NEXT TO ME

Written and Narrated by Providence Bowman https://awarenow.us/podcast/sit-next-to-me

“If you could disrobe yourself and strip away everything from the past that you drag with you conspicuously in neat containers, I think you would find a treasure chest. That in the sand you would have your heart in your chest still thumping and beating comfortably cathartic, In the sand you are surviving and adapting; not sinking. I could not be more proud of you.”

“I wanted to reinvent myself. I moved into a new home. I mastered new routines. I put Dolce and Gabbana Light Blue deep into the vanity. I wanted to do everything to drown the person that I used to be. The person that you kept hurting so deeply. But after three weeks what I came to realize was that I was doing that exact same thing to her. I was hurting myself and putting brick walls around the feelings and beliefs you put in my head. That I am not enough. When you are suffering you do not need to reinvent yourself, you need to dig deep into that hurt and find yourself. Change is a good thing, and I do not lament on the layers that I had to shed to release you from my grasp. But I refuse to carry around this notion that the skin that I live in today is the same skin that I died in over and over. You will not find growth in abandonment.” ∎

PROVIDENCE BOWMAN

Awareness Ties Columnist www.awarenessties.us/providence-bowman

Who am I? Well that's a good question. I am 22, without a clue. I am in a phase of life where I am planting seeds, seeing what roots fit right. I am currently working in Regulatory Affairs for Acrisure. I am currently settled in Grand Rapids MI, trying on as many pairs of shoes as I can, seeing what fits best. I have found a great deal of joy in conversation, mindfulness and meditation. I am learning and healing everyday, that is who I will continue to be; that shoe fits the best.

TAP/SCAN TO LISTEN

TAYLOR PAIGE INTUITIVE, ANGEL READER

It’s a form of energy that’s uniquely attuned to our highest self…

Photo Credit: TaliaDinwiddie

EXCLUSIVE INTERVIEW WITH TAYLOR PAIGE

ANGELS ADVOCATE

A VOICE WITH ANGELIC VERNACULAR

Taylor Paige, internationally recognized intuitive, sought after celebrity angel reader, spiritual teacher and owner of Angels & Amethyst is on a mission to connect as many people as possible to the wisdom and guidance of their angelic guides.

ALLIÉ: Grounded in the ‘spiritual arts’, when did you first recognize your connection to a realm beyond what most recognize and understand?

TAYLOR: I think like most people in childhood, we come in so connected and then slowly close up into adulthood. But so many children have imaginary friends or see past loved ones near them. I was no different from that. But like many with spiritual awareness on the forefront in childhood, I got so scared of these abilities to sense things. For me, clairsentience, which is psychic feeling, was my strongest psychic sense that came on first, which I also think is very common. Basically, every single person has clairsentience to some degree. When you walk into a room and the vibe feels ‘off’ that's clairsentience. So, I could feel things around me, and I was very scared. And my fear was like a magnet to attract fearful experiences to me in this realm. And so, yeah, it's been a bit of a journey getting to a place

TAYLOR PAIGE INTUITIVE, ANGEL READER

Joy is truly an internal GPS system. It is a very strong form of intuition.

Photo Credit: TaliaDinwiddie

ALLIÉ: In regard to early memories, please share the story of your great grandmother and the birthday card she left. TAYLOR: When I was younger, I was a very interesting, odd kid. I was very to myself. I came from a small town, and I never really fit in with the people there. I was always kind of bullied. I was always to myself. And so I was in my room, and I loved to read. I would read all the time. And I was just in my room reading, kind of hanging out. And all of a sudden, I just got this really strong feeling that my great grandmother who passed was around. I was raised with a mom who was super spiritual. My mom was an astrologer as well. And so she taught me that there's more than meets the eye. She would always talk about how my great grandma, her grandma, was around and would send butter flies to her. And, so I just got this feeling. I was like, that must be my great grandma. And I just clearly got the message, go into your closet. I went into my closet and I had this little messy area, like a lot of kids do. And one of the things in that messy area was this drawer that I used for loose change. I would put things in it and sift through the contents, but I never got around to organizing it. So it was just kind of this messy drawer. And the message told me to go into the bottom drawer, which I never opened. And so I went into the bottom drawer and there was an unopened birthday card from my great grandma in there. And I felt her so close to me, and it's just beautiful. Since then, my mom has passed as well, and she sends me butterflies. So it's almost like an ancestral generational sign from the women on that side of the family. Our loved ones are always with us. They're always sending us signs. It's really magical and beautiful. And I think for a lot of people, loss and grieving is what opens them up spiritually to seeing that there's more than meets the eye.

ALLIÉ: For those only familiar with ‘angels’ in regard to historical religious references or mystical beings of fantasy, how do you define angels and their presence in our lives and what is yours?

TAYLOR: I love this question because I always say there are as many definitions for the word angel as there are people speaking about angels. It's such an ineffable kind of presence. I de fine angels as a specific form of energy that has never been human. So, I don't believe that our past loved ones are the same as angels because in my sessions, I work with both and they feel different to me. I believe that angels are a specific form of energy that do not have the capacity… They vibrate at such a high level. They're not restricted by time, space, or physical form. And I feel like it's so tempting for humans to anthropomorphize everything and say that God is a man in the sky. We just personify everything. And I believe that angels are a high frequency of energy from the angelic realm, which, as we've seen, there are multiple galaxies around us. So, who knows what that means? When I've tried to feel into it, I see an inverted black hole, and I can't process it for more than a second. I believe that there are forms of energy here to help us to grow. And when you talk about, like, archangels and biblical figures, just like all religions do, there's truth in it, but through the lens of human consciousness. And so I think angels are kind of wrapped up in that. I think angels take specific forms, names, shapes for us to better understand them. And I do work with the archangels occasionally. I think there's many different forms of angelic energy, but it's too big of a concept to fully say, this is it, one and done. So if you have a definition of the word ‘angel’ that feels like truth to you and is personal to you and makes you feel connected, go with it. I believe that we have multiple angels around us that are impossible to quantify because it's a form of energy that's uniquely attuned to our highest self, that helps lead us to get back to that place.

ALLIÉ: As people, we often question our existence and our role. When it comes to angels, what is your role?

TAYLOR: There's so much to say. Like many people in the spiritual space who are healers, readers, intuitives or whatever they call themselves, I think that there's commonly what is called ‘witch wounds’ around us of memories of persecution. And don't get me wrong, witch wounds isn't as literal as being murdered for witchcraft. Witch wounds are any kind of patriarchal wound that has been internalized, that it's not safe to be powerful if you don't fit within the mold of, like what organized religion tells you that you should be. And so I think just like so many spiritual, intuitive people come in with a lot of fear, it's almost like we are getting tasked with the exact life path and purpose we need to

“Our loved ones are always with us. They’re always sending us signs.”

Podcast ANGELS ADVOCATE

TAYLOR: (continued) confront our fears, heal our wounds, and be of service to the world. And I think that applies to everyone when they're in line with their purpose. There is a certain level of getting out of your comfort zone and doing what lights you up and brings joy to the world. And so I think my role is to really heal myself so that I can help others heal and light that spark within them as well. And I believe we all have these abilities. This lifetime has challenged me. I mean, I grew up going to prep schools my entire life around people that are going down very traditional and high power career paths. And, I'm like, over here. I'm an angelic intuitive. I'm an astrologer. And ‘traditional’ was never going to be my path. I was always set on this rigorous academic course, and so there was a lot of ego that I had to overcome. There's just been so many wounds and fears and insecurities going on this path. I started about six years ago, so I've come a really long way. But, I think that this path and my role is really a perfect cocktail of what my soul needed to evolve and heal. It's not like a guru, know-it-all type of dynamic. It's like a human doing what they need to in order to help other humans do the same.

ALLIÉ: For those who have only known angels as ones to pray to and not to speak with, what advice do you have for finding a way to connect with comfort and confidence?

TAYLOR: With our angels, like I was saying before, it's so common to personify them to say, my angels are probably so frustrated with me right now, it's probably annoying them that I'm asking for this. But they don't have the capacity for those human emotions. They aren't in physical bodies like we are. They are vibrating at such a high level of service and love. And I always say that the language of angels is joy. So the quickest way to feel connected to your angels is to follow your joy. Joy is truly an internal GPS system. Joy is a very strong form of intuition. It's a green light. And so our angels, first of all, a key component of angelic connection is free will that goes hand in hand with unconditional love. Our angels are always with us, but we have to choose to be with them consciously. That's why I wear this promise ring to them that I’ve worn every day for six years. Basically, the first thing is to invite your angels in out loud. That is like the basic way to start connecting with them. The next is to realize that like any relationship, it takes time. It takes trust. It takes communication. It's actually very advanced to say, angels, please give me a message about XYZ and then immediately understand and receive the message. That is like a professional level of angelic connection. But like I say with other things, say it’s basketball, you don't hold a basketball for the first time, then become Shaq. And it's the same with these spiritual abilities. But for some reason, we are so quick to dismiss ourselves or say, no, I'm not connected. Don't throw the baby out with the bathwater. Treat this like any relationship. If you get things that confuse you, take that as information. If you get signs that make perfect sense and help you on your path, take that as information. I always recommend my students start a miracle journal so that you can write down all of those moments that you felt supported by your angels or what your signs are. You can also choose what your signs are and ask them for specific signs so that you're not just a passive bystander in the relationship, because it is a relationship. It's so easy to feel like you are not supported but in the moment when something happens, like a synchronicity or a sign or a message, you get so excited and then immediately forget it. Having a journal of all of those times helps bring you back to that space energetically, which raises your vibration. Our angels vibrate at such a high level that we have to raise our vibration to be able to feel them and they have to lower theirs. The very basic step to be able to connect with your angels is shadow work. It’s healing yourself. Because the lightest of the light has the darkest of the dark shadow beneath it that needs that component for balanced and authentic connection. ∎

AwareNow

Exclusive Interview with Taylor Paige https://awarenow.us/podcast/angels-advocate

TAP/SCAN TO LISTEN

Follow Taylor on Instagram: @angels_and_amethyst

DUSTY LINSLEY MOTHER & WIDOW

I got married to be with my husband, and it’s really hard to have him gone.

EXCLUSIVE INTERVIEW WITH DUSTY LINSLEY

LOVE & LOSS

SHARING AND CARRYING ON

A mother, a widow, and an inspiration to all, Dusty Linsley is the mother of six children who lives to love. Bringing hope to others is how she heals, by empowering the lost to embrace and find themselves amidst the chaos. By example, she leads by carrying on.

ALLIÉ: People come and go in and out of our lives. I remember as a freshman in high school, when you came into my life. Both on the volleyball court and on the track, I was inspired. Beautiful inside and out, you were not only the athlete but the person I wanted to be. You made quite an impression. Not sure if I mentioned this to you before. Who, Dusty, made an impression on you when you were young?

DUSTY: That's a great question, and I'm sure I've never asked myself that. So, it's good for me to think about this. And no, you didn't share that before with me… There are many people that leave impressions in our lives, and it can be good and bad.

My dad and I weren't very connected emotionally, but my dad was very present in my life, and so that in itself made an impression on me. I don't necessarily look at my parents' marriage like a marriage made in heaven. My dad was always there working really hard for our family, and he was a disciplinarian. He was at all of my games. In his own weird way, I knew that he loved me. I watched my dad's work ethic. He didn’t call in sick… I don't remember him watching tv. My dad loved working with his hands… He was always working hard. On top of that, I grew up on a farm. We didn't farm it, but I grew up on a farm that my dad worked. He started this motocross track in what used to be the

CLICK, TAP OR SCAN

There

DUSTY LINSLEY MOTHER & WIDOW

was something different about him. He didn’t sway…

made an impression in

DUSTY: (continued) would end between the house and the maple tree. And he would yell because he ran so hard… I remember watching him come in, glistening with sweat. He just gave it his all. He’s a Vietnam War vet. He’s seen things that we will never see. His life wasn't easy. His home life wasn't easy. And I can imagine that running and working with his hands was a huge outlet for him. He did it, and he did it hard. I just remember that about him. And even my grandmother, his mom, she lived behind us… she was always working and always busy. She led a pretty healthy life for a really long time. It’s not that I want to be just like my grandma or my dad, but those were people that I was around all the time, especially my grandmother. And I think that they taught me plenty without my knowing or realizing it. They made an impression in my life that you can do more than you think. They taught me to work hard and to be fruitful with your time. Going back to high school, I look back, and I had a few friends that were different. They didn't follow the normal crowd. And I couldn't put my finger on it then, but I can now. And actually, my husband Mark was one of them. I was friends with Mark, and we had the same circle of friends because we all rode the track bus together and had class together. We were all in class together. But there was something different about Mark. I thought he was shy in high school, which is hilarious, because he wasn't. That's how well I didn't know him. But there was something different about him. I feel like he had… I don't know if you say ‘convictions’ or ‘boundaries’ that he set in his life that he lived by. He didn't sway back and forth. And there's a few other people in high school, that left an impression on my life because they stood strong in their convictions. I think I wanted to be like that. I probably thought I was a little bit like that, because I was a ‘good girl’. But I learned later in life that those convictions weren't strong enough, because they didn't hold me, and I definitely veered away from them.

ALLIÉ: There are people who leave marks in our lives. For you, it was Mark who left a permanent mark. Please share the story of the two of you.

DUSTY: That's a long one, too. Where do you want me to start?

ALLIÉ: Start wherever you’d like.

DUSTY: It really could get long… Okay, I brought my tissues. I'm kind of a prideful person and don't show my emotions very well. I'm learning that it's okay. And I'm not going to say sorry.

ALLIÉ: Yes, please don't say sorry.

DUSTY: Right. I'm not sorry for having a heart and being able to talk about it… I met Mark in high school, as we have already talked about. I remember the first time I saw him, and I remember what he looked like. I remember what I was wearing. Isn't that funny about girls? I can tell you what I was wearing. I can tell you my hair was up in a ponytail because I was getting ready for basketball two-a-days. We were freshmen. I went to high school with Mark, like I said, and we rubbed elbows and were in the same circle of friends. But I did not know Mark very well. We're in a lot of the same pictures, but I didn't know him very well. Although I did sit with him on the bus on the way back from the senior trip. There's a picture of that. And I couldn't tell you what we talked about, but I'm sure it was a good time because Mark's a good conversationalist.

So, we knew each other in high school and then went our separate ways. I went off to Boston to be a nanny because I thought that I needed to travel the world. We're very funny when we're kids. You have these expectations of what your life is going to be like… I definitely wanted to act on it. I didn't want to talk about how I was going to leave… I wanted to do it. I loved kids and stuff. So, I was going to go be a nanny. Anyway, he went to Cornerstone College. After nannying, which didn't last very long for various reasons, I came back and went to college. He graduated college and went off to Alaska. I graduated, barely… Not because I wasn't a good student, but because of another crazy, traumatic episode in my life – when my sister was murdered in the fall of 1999. I just had to get through… I did graduate. I had very understanding professors. I felt like my mom wanted me to be home. So, I stayed home. Looking back on that, I realized I wanted to stay home. I turned down some design opportunities for work to stay at home… which is awesome because Mark came back from Alaska. He came back to get some more flight certifications from his grandfather who lived in Newaygo.

“They

my life that you can do more than you think.”

“I don’t even know how to explain Mark…

He was just everything that you would want.”

DUSTY: (continued) Mark’s sister was attending a church called River Valley Church. And my best friend was going to that church as well, which in itself was a huge deal because I was brought up in the church and would bring her to church when I was a kid, but I was the one not attending church anymore. And she was like, “Dusty, you gotta come. This pastor is awesome.” I'm like, “Okay, I'll come.” And Mark started attending there because he was temporarily home. My best friend Julie and Mark’s best friend Jason were dating and they were engaged. They were getting married there. So, Mark and I kind of re-met there, and we started talking… a bunch.

At this time, I was training for my first marathon. Julie thought Mark and I should run together, but I thought he wouldn’t want to run with me... But he called me! He said, “How far do you want to run, Dust?” It was kind of a nickname. It became kind of a pet name. I don't know why he called me ‘Dust’, but in our marriage he called me Dust all the time... It was very endearing to me. Anyway, I said, “Okay.” And he ran with me, which was good. It was getting dark earlier. It was kind of hard to fit those miles in and kind of lonely when you get on those long runs. So, he started running with me. When you start running with people, you develop a bond with people because in those long miles, you’ve got to talk about something. I've developed many friendships through running just because you’re kind of forced to talk to each other. Mark and I talked about our friends getting married. We had friends who are already getting divorced. We talked about that, and we talked about my sister because it was still pretty fresh and we'd both been interviewed by the state police. That's a whole other story. So we had that to share, and we just caught up on life… We really learned a lot about each other – what our views were, what we wanted in life and in marriage, what our views on divorce and parenting were and all of that stuff. And in that process which lasted over October, November, and through December when the marathon was, I learned I was kind of floating through life. Allié, I didn't really know what I should be doing. At that time, I was a single mom. I had a four-year-old. I felt like I didn't have my act together. I was living at home with my parents. I was doing side work, at least earning my own money. But I just wasn't sure about what I was doing. And through that process of running with Mark and really getting to know him, I knew that I wanted to marry somebody like Mark. I did not think it would be Mark because I had lived my life according to myself. I wasn't living my life right. I was a single mom, but I had wanted to save myself for marriage. I mean, I had different expectations and I let myself down. Um, but he saved himself for marriage. He was a good guy. I don't even know how to explain Mark… He was just everything that you would want. He was athletic and good looking. He loved the Lord, and he had great relationships with people. I don't think he had an enemy on this earth. And I just didn’t think that the two of us were a possible match. But I want somebody like him because I didn’t think I could have him. Anyway, it was probably about February that we went on pseudo dates through our best friend's dating because we were the Best Man and the Maid of Honor. So we got a lot of time together, and he taught me how to play euchre. He taught me a lot of things. He really did… And then he asked me out, and it blew my mind. He asked me out and I thought, “Really?! Do you know what you're getting into?” We dated for six months, and he proposed to me. There were no cameras around or crazy photoshoots. It was just us. He proposed to me, and I said yes. And ten weeks later, we got married.

Mark's biggest fear was being a stepdad… I've been reading through a lot of letters. We wrote each other a ton of cards and letters. Now days, I guess it's texting, right? We talked on the phone a lot. He really wanted to be a good husband and he really wanted to be a good father. And so going into this as a stepfather, he was really nervous. He didn't know what his role would be. Just the fact that he worried about that and he never stopped worrying about that… I look back through these letters and I think he really wanted to be a good husband not just in the beginning, but through the whole thing. It was a priority for him.

Anyway, we got married and shortly after we had a kid. We had Cora Grace, who's named after my grandmother. Then we had Alyeska a year and a half later. And while I was pregnant with Alyeska, we entertained the thought of adoption, but Mark said I was crazy and I probably was. I knew it wasn't the right time. We were just talking about it. We lived in this little tiny house, but we renovated it and real estate was awesome to us at that time because it worked for us in the end as we sold it, made a profit, and moved on. We moved to another farmhouse and had Aly two weeks later We lived there for a long time, and we did go through with the adoption process.

For the adoption, we had to take a foster care class. And I will tell people that everyone should take that foster care class… what an eye opener to what's going on in our community and with these kids. Adoption isn’t for everybody, and I don't even know if it was for us, but we did go through with that process. About a year later, the adoption center

DUSTY: (continued) came to us with a sibling group, and we took them in. And that is a whole other story, but during this time, I found out I was pregnant. Mark always wanted to have a little boy. Yes, he had a stepson, but it wasn't… People can pick on me and say whatever they want to say about this, but there's something about having your own child that comes from your DNA. I didn't know if it was going to be a boy or girl, but I was really hoping we were going to have a boy. And we did. So I went from three kids to six kids in nine months. It was a roller coaster, and I thought I was going to lose my mind, but this is about me and Mark… So, I'll go back to that later.

I felt like when I turned 30 that Mark and I were really in a good place. People freak out about 30, and they freak out about 40. But I felt like Mark and I were on the same page. I felt like our marriage was really strong. It felt really good. Life is chaotic… but I feel like because of our basis for what we wanted in our marriage and where we drew our convictions from allowed us to be able to work through everything and always land on the same page at the end. He owned his own aviation business for a while. Then we went into business with somebody else and started flying for a company called L3. He is a pilot by trade and just loved to fly. He loved to fly… I wish I had had that passion and flew more with him, but I just didn't love to fly…

I was a mom of six, and I was home by myself a lot. Mark loved coming home, and he loved being home. When he wasn’t home, it was hard to be by myself, but Mark said this before he would go, “If you were anyone else, you wouldn't be able to handle it.” I felt like I was independent enough that I didn't need to have my husband patting my back all the time. I could do it by myself, but it was always good for him to come home.

While flying, he would make connections wherever he’d go. He made a lot of connections in the aviation world, made a lot of friends and touched a lot of people's lives. He asked people about their stories. And he likes to tell stories. People really liked to be around Mark. After he started working for another company, he was there about a year before he had gotten sick… Sorry, I need to backtrack a little bit - about six year before…

The best friends that we were in the wedding for, their son was born with a kidney disease. And they knew he was going to need a transplant at some time in his life. A lot of us went in to see if we were matches, a lot of family members and friends. But Mark was the best match. In fact, he was a really, really good match. You have to have both tissue match and blood match. It wasn't something Mark necessarily wanted to do… but he felt like this is something that he was supposed to do. And he was like, “Well, we have two, right?” So Mark was a kidney donor to a 17-year-old kiddo who after that went on to play sports and even run in college. The doctors said they'd never seen two people recover from a kidney transplant as quickly as those two. That was in June. At the end of August and Labor Day weekend, he was jumping picnic tables again. It didn't alter his life at all. He just couldn't take ibuprofen, like candy anymore. And he had to drink a lot of water. So, that was a big event that happened and I feel is important to know in this story.

DUSTY LINSLEY MOTHER & WIDOW

I watched my husband go from this strong, active person to someone whose body was withering away.

DUSTY: (continued) I always thought Mark got really weird sicknesses, but he always recovered. It's kind of been an ongoing joke in our marriage, especially because I don't ever get sick. (Knock on wood.) He would get the weirdest things. Anyway, Mark loved being with his family. He loved being home with his family. So, he would come home from trips and I'd be like, all right, you know, this great thing is going on this weekend. We should go do it. And he'd be like, no, I just want to be home. I couldn't really understand it. And I tried to explain to him that I was always home. Thank the Lord that I got to stay home with our kids, but I was always home. I wanted to get out. He wanted to be home. When he was gone, I was in charge. He'd come home and I’d have to hand the reins over. We're always constantly trying to shift back into our positions and shift back out, while trying to feel each other out. I felt like we were good at doing that. We were a good match, not that our marriage was perfect. Life was really rough. We had things happen of course. Life just happens, and it can knock you down. It does knock people down, but I feel like we got through it. Raising kids is hard. Raising adopted kids is really hard. I've watched people walk away from their marriage, because they just couldn't handle it anymore. Thankfully, Mark and I never considered that. It was never an option.

We were married for almost 20 years, and we raised six kids semi-successfully. It wasn't always fun, but we had fun. I liked being with him… We had just gotten back from a backpacking trip in Wyoming in August of 2021. The 10 day backpacking trip was pretty brutal. We were with all of our kids in a large group. Mark didn't feel super awesome. On the trip, he'd been feeling tired. In the tent, he kept getting out to pee at night… That zipper in the tent. I'm like, I can't sleep on the ground as it is. Stop getting up. That was a definite sign of something that was going on… but I'm a little bit of a cynic when it comes to the medical world. But we got back about five days later. He had extreme pain in his back, and he laid down, which is not normal for him. We ended up going to the emergency room. They said that there was some sort of mass in his abdomen. Something was pressing on his ureter. Anyway, we had to go to a urologist. There was some emergency surgery for a stent in the ureter, which probably helped for like 12 hours. And then he didn't feel good again. A few days later we were in the ER. It was a 15 day stay in the hospital with biopsies and tests and Catscans and finally a diagnosis… His one good kidney… he had a really large tumor and it was cancerous. It's killed the lymph nodes around it and basically it had already metastasized into your body. How does that happen? He didn't even know it! How do you live a life where you win a basketball tournament just three weeks ago and all of a sudden you just shut down and you're going to die? I mean, you don't know when… Those words weren’t actually said to us. Those are my words. But day three at the hospital, they said they had to put a CVC (central venous catheter) in his chest and that he needed to go on dialysis. That was hard for him. When you go on dialysis, you don't know if you're coming off. You are dependent on a machine to clean your blood. Your whole life changes. It was really dark.

I left the hospital that afternoon to go to my kid’s first cross country meet. And I was just like.. walking in this fog wondering what the heck had just happened? It was just awful. The next day they put in a CVC, and he did dialysis… It was horrible. And it was awful from then on out. We got home, and we did training for in-home chemo and dialysis. It's three to five weeks of training, and then you have a machine brought into your house. You've got tubes everywhere, and your office becomes a medical facility. I hooked my husband up with lines to his chest every single day for three and a half hours, five days a week, so that he could stay alive. It certainly didn't seem to make the quality of life better. On top of that, we had to find an oncologist and started immunotherapy/chemotherapy. I watched my husband go from this strong, active person to someone whose body was withering away. He couldn't sleep. He couldn't eat. There was nothing I could do to help him, and our kids watched it. It was awful. One thing is this… Cancer can eat away at your body. Dialysis can make you sick. The one thing that it couldn’t take or touch was his spirit or his heart. He never doubted God through the whole thing. He cried out… and I heard it. I heard the man cry out. You don't see that in your spouse, or I hadn’t. He had his quiet moments where he wasn’t so strong, but to hear him hit the table with his hands, and he hit it hard... When that happens, you don't have an answer, and you will never have an answer. But he wasn't mad at God. He just didn't understand it. None of us did. And so I watched him. The thing we learned early on is that you don't fight it. It's part of your life and you work alongside it. And hopefully in the

“I hooked my husband up with lines to his chest every single day for three and a half hours, five days a week, so that he could stay alive.”

You just relearn…

DUSTY: (continued) end, you surpass it. Anyway… that diagnosis led to many other health issues, including a broken back and back surgery. There was a time before the back surgery when we thought he was getting better and gaining weight and more muscle mass. He had to have that back surgery and go off chemotherapy though. Everything seemed to go downhill from there. When he was in the hospital alone, that's when he was told that we are just buying time. I couldn't even be there with him. How do you get that news from your doctor and the spouse can't even be there with them?

I remember when we learned he had to go on dialysis. We were sitting in the hospital, and he said, “We can do this, Mark. I can do this.” I've said that a lot in my life. We'll do this. We can do this… And he said, “I don't want you to be my caretaker. I want you to be my wife.” And I thought I could be both, but that was not true. You shift to caretaker. You just do, because that's your priority. You need to make him feel better. You need to make sure he's eating, make sure he's getting to the doctor. He doesn't even know the name of his medicine. He trained for dialysis, but he couldn't remember it. So you have to do it all. And sometimes you forget to be his wife. And so that was really hard. At night when you are normally watching a flick together with a glass of wine, I was now fixing the dialysis machine in the office as he dozed off in his recliner. If I could go back, which we can't, we shouldn't even talk about it… but if I could go back, I would say I would have focused less on what we had to do and just been with him. I couldn't even sit next to him. He had to be in his recliner because his back hurt so bad all the time. I couldn't sit by him… I could sleep in the same bed with him, but everything hurt. And I wish I had just let him know more, how much I appreciated him and loved him. I wanted him to know how much I would miss him, and that I wouldn't be okay… Because he's like, “You'll be okay.” And yes, I'm fine… I mean, I’m not. But… You don't want to go through life on your own. I got married to be with my husband, and it's really hard to have him gone. I’m so mad that my kids don't have their dad. I was like, I'm going to have these kids whose dad died when they were in high school. How do you recover from that? You don't recover. You just relearn.. You relearn how to do life, and you just keep going. I feel like they were gypped. From diagnosis to death was 9 months, we thought we had more time. But I also feel like they were really blessed to have Mark as their dad… I guess that's our story in a nutshell. That's the story of us.

ALLIÉ: Well, it’s a story of strength. It’s a story of finding strength in each other and finding purpose. It’s a story of commitment… It’s a story of love. Thank you for sharing so much so deeply. There are people who go through life who have experiences like these and feel that they’re quite alone. They feel no one else feels this and no one else gets this. Alone they will remain until someone like you shares a story to say I hear you, I feel you truly. So, thank you. That takes strength. You are stronger than you know. ∎

Dusty Linsley

TAP/SCAN

“You don’t recover.

You relearn how to do life, and you just keep going.”

RANJIT GHOSHAL FOUNDER AND CEO OF ONE MILLION STEPS

We can all take the same simple steps to begin to make our difference.

Ranjit Ghoshal is the Founder and CEO of One Million Steps, building a healthier world through giving for charities, businesses and you. He believes socially innovative businesses can be a powerful force for social change and sustainability.

KERRY: Ranjit, thank you so much for taking time out this evening from Cardiff, Wales in the UK where you are hard at work building a platform that creates a level playing field bringing businesses, communities and people together in this beautiful living, breathing 24/7 marketplace – or really an ecosystem – for health, wellbeing and social good that supports our nonprofits, enabling them to accomplish their missions, whilst also providing companies with an affordable means to both improve their employees mental well-being at the same time they are raising funds for local charities or their own internal CSR initiatives.

RANJIT: Hello, Kerry. Thank you so very much to you and AwarenessTies for allowing me to be here. And a huge hello from Wales.

KERRY: A huge hello from San Diego, California! I’ve found passion and commitment such as yours always starts with a personal story. Is there a personal story behind why you are so passionate about helping the “little guy,” as you fondly refer to the smaller nonprofits who typically struggle to raise funds particularly on the heels of COVID. The story

EXCLUSIVE INTERVIEW WITH RANJIT GHOSHAL BY KERRY MARTIN

RANJIT GHOSHAL FOUNDER AND CEO OF ONE MILLION STEPS

We start with the idea that wellbeing is actually different for each of us.

RANJIT: It's an interesting question, isn't it, Kerry? Why do we do the things that we do? And why are we what we are? In a sense, our journeys are shaped by deep personal experiences. From childhood, I've always hated bullying whether in schools, workplaces, or relationships. And I guess you could say that it literally started when I was THAT little guy, powerless. In this growing sense of awareness, I started to notice the inequalities of the world that we live in.

Then, when I was about eleven or twelve, I read Mark Twain’s The Tragedy of Pudd’nhead Wilson, an incredible book about social injustice and social inequalities. One line just stood out: “Let us so live that when we come to die, even the undertaker will be sorry.” You could say that it's haunted me. And, it’s certainly driven me.

I realised early on that every day and every moment, I have a choice to make. An action that can make a difference. And my part led me to 14 years in the social good sector: social housing, homelessness prevention, working on the frontlines, in strategic positions, and at board levels. And I saw how unequal things were and I got increasingly frustrated.

One day I said – well actually, I busted my knee training for a charity event first – I said, “Can one person do something that can help raise $100 million for social good in five years?” That became my North Star. But that then raised the question, how do we get to this North Star? And what is the biggest social impact we can make along the way? We know about the obesity and type two diabetes crisis that is out there. We know about the upsell and the fluff. And, I sort of thought if we could embed no BS, no fluff health and wellbeing principles in communities and use a fundraising tool as a social good motivator, we really would have a win-win situation.

But I realised it wasn’t going to be that simple. I realised that first I had to create a level playing field so the local greengrocer and community group to the largest corporation and charity all had the same powerful tools to drive health and well being and raise funds for the work they did.

And that's what I set out to build, a marketplace which harnesses and ampli fies the passion and energy of people in communities with, at its core, a celebration of wellbeing, but one where every organization at every tier can use because the little guys don't have it.

KERRY: As someone who used to run a nonprofit that tried to save lives and improve mental outcomes in the bipolar community, it was such a struggle for us as a little guy, or little woman in this case, to raise funds. So I really appreciate what you're trying to do. One of the things I was reading when I was researching your company is what you said about, “Every day is New Year's Day if you want to start something good.” And when I think about those who embark on your challenge of one million steps in over 100 days to raise funds for charities, do participants really embrace that enlightenment you're trying to empower them with, embracing the challenge and successfully raising funds? What has been your experience of how challenge participants have benefited, and charities as well?

RANJIT: That quote, “Every day is a New Year's Day if you want to start something good,” is actually from my granddad. I asked him what his New Years resolutions were, and he said that. And back then, I do remember thinking, “well, that's ridiculous, right? There's only one day, and it's 1 January”. But it then struck me, well, wait a minute, actually, I can start any day I want to if I want to do something good. Not just for myself, but for society around me. We've had people who have come to us and said, “Oh, I don't know if I can do it. I'm not sure. Maybe I'll change my mind.” And I say, “Look, just try. Do your best. You're the hero of the story. You don't need to do much. We'll show you how to do things, but just have a go, because you never know where you'll get to.” And, we've had people come back multiple times. They may have failed the first, completed the next and just want to get it down to 70 to 80 days.

“I realised early on that every day and every moment, I have a choice to make.”

Wellbeing doesn’t need to be complicated.

RANJIT GHOSHAL FOUNDER AND CEO OF ONE MILLION STEPS

RANJIT: (continued) In terms of organizational success, over the last two years, we've helped quite a few organizations, brand new nonprofits all the way to multimillion organizations. They all have an overlap, both small and large, and face the same problems. Ok, let’s be honest! Everyone wants a low risk, low resource event that they can launch easily somewhere, particularly a small guy. And that's the key, I think, understanding the multiple and deep pain points. And I was there. I was lucky to see the wider landscape. I did frontline and strategic work and sat on boards. I spoke to businesses as an ambassador. And these things allowed me to see the bigger picture. For the nonprofits, think of all the tasks: the multiple meetings, the discussions of what day do we set it on? And these things start getting everyone bogged down.

But the critical thing was the busy business owners. These are people who wanted to do some good. But whenever they went out, the local causes couldn't engage back. And the businesses felt, “Well, who's going to plan this? Who's going to do it?” And one thing that we kept hearing was that businesses wanted something meaningful and inclusive that ticked as many of their goals as possible. The health and wellbeing, and the corporate social responsibility (CSR). But, most importantly please, with as little fuss as possible, “we just want to get on with it and we’ll do the social good.”

And, then let's remember the participants, the users. The user journey is so critical, and any break in it breaks the journey. You have to make the user think about the value hierarchy, about what it brings to them. They have an easy sign up to the challenge. They understand the rules. We provide them with the tools and they can do it with friends and family, and do something for social good. And, once it all comes together, no matter what happens, I say this to them, “It doesn't matter. Just do your best. You’ll learn something, you'll improve. And no matter what happens, you’ll get a benefit out of it.” And each of those points is critical.

You asked about success stories. I love the small rural food bank that came to us a week before a national event wanting to raise £1000. They were very much a bucket in the supermarket kind of organization. They said, “Look, even a bucket in a supermarket isn't that simple. First we've got to organize the volunteers, then we’ve got to travel to our destinations with the kit. We got to set up the stands and stand around all day asking for small change. You get some lucky days, but it's still hard work”. So we’re not saying, don't do that. What we're coming in and saying is “Look, you've got all that passion and energy. You can still do the usual, but also do stuff that allows you to scale your reach and energy and amplify it easily and efficiently.” So the food bank came to us to raise £1000. It was a lot of money for them. One week later, one of their supporters who worked in a local business brought that business along and 100 days later they raised £2000, double the target.. They calculated it as two tons of pasta for the local community.

KERRY: I love it.

RANJIT: All of this came from 25 people who walked 9,000 miles in 100 days. Another great story is about another small charity, a one person charity and it was their biggest fundraiser ever. They raised £21,000 in 100 days, with just 200 people walking 75,000 miles, which is three times around the planet. It's just so powerful to see how each person, each little bit, comes together for that big result.

It's the stories of people that mean a lot to me, really. The mother who wrote to us to say thank you because her twelve year old had walked, I think it was 700 miles in 100 days, and it changed his mindset. Peter, who took the challenge five times in a row and then signed up for a marathon. A stroke survivor who walked the length of Britain. That is 1,200 miles in 100 days. The professional rugby player who realized he actually never spent enough time with his family, and he only realized that when he was going for walks with them. And the lady who found, in her own way,

“Just do your best. You’ll learn something, you’ll improve. And no matter what happens, you’ll get a benefit out of it.”

RANJIT

RANJIT: (continued) a sense of mindfulness when she said to me, “I found more time with God.” But the funniest one I had was a lady who said, “Oh my God, I never thought I would enjoy walking in the rain so much.” And then she goes on to say, “The biggest miracle was, I never thought my husband would join me to walk in the rain and enjoy it as much as I do!” They do bring a sense of joy, which also brings a strength, if you know what I mean.

KERRY: I love hearing these little joyful stories so thank you so much for sharing these with us. I just wanted to share with you something you may not be aware of because it's coming out of the States. Our Surgeon General recently released a report speaking to the state of mental health in our nation’s workplaces:

1) 76% of workers reported at least 1 symptom of a mental health condition.

2) 86% said workplace conditions contributed to at least one mental health challenge.

3) 81% reported they will be looking for workplaces that support their mental health.

I know your model allows businesses to use One Million Steps as a corporate wellness program whilst also raising funds for a local charity, which in light of these latest findings certainly makes common sense to me. Can you expand on this as it applies to the different ways a company can use your platform to help their employees’ mental wellbeing whilst doing social good?

RANJIT: I'm actually going to start right at the top, where you use the word “corporate” and also corporate wellness and wellbeing programs. When we look at the number of people employed by small and medium sized businesses in almost any country, the number of staff employed by small organizations outweighs the numbers working in organizations that have thousands of staff, and many of the businesses that come to us don't feel that the corporate wellbeing programs are for them.

We've had very large organizations who have taken this on as well, and we're talking about multi million pound organizations, and it was an event they felt complimented other stuff they ran in the real world, like treks. But the sounds I was hearing were actually to do with the fact some businesses were small and no one catered to them in the past. And suddenly we come along, and as one of them said, “So I can get my staff to do this. It's inclusive. I don't need to speak to HR. And, we can do it together and also deliver social good?” It's a no brainer, right? Because before there were multiple barriers for them to actually go on that corporate wellbeing side of things. And what we do with social innovation, I'm very, very keen on emphasizing that we connect dots. We have a sustainable delivery tool based on health campaign modeling and value-based health care principles that can be used for self and social prescribing and importantly to tackle health inequalities. Getting fit doesn't need to be expensive. We start with the idea that wellbeing is actually different for each of us. And, that we can all take the same simple steps to begin to make our difference. And, we build bridges to connect corporate social responsibility, social good, and people.

Wellbeing doesn't need to be complicated. It certainly doesn't need to be expensive. And we emphasize that, if you're the hero of the story, then everything you already need is in you. That's the start. And in your home, because if you haven't got the money to get to a gym, to go to an outdoor class, it's just outside your front door. But the most critical thing is time and learning. Start, learn, repeat, improve, and persist, but just start. If you give yourself the time, the improvements can be so subtle. Sometimes you have to look back to realize how far you've come, but you start to explore other options to add to your journey. So we start dropping in some of the fundamentals of leading a mindful life, and where meditation sits at that. We try to emphasize that they're actually just 15 or so key body and strength conditioning exercises that you can take with you for the rest of your life. In fact, I sometimes say to people, be the best beginner in the world, and that alone is enough, because it will spur you on to try other activities. It's because your options are now wider, because you've come further from where you started, you've improved.

KERRY: When I ran a nonprofit, we did use a traditional peer-to-peer fundraising platform asking people to set up a page on social media and share a video encouraging their friends to do the same and to donate for a good cause mind you. But, the platform had none of this mindfulness that people could jump in and walk, and you then push additional free content to participants such as yoga, meditation and nutrition so that they actually incorporate this into their daily activities, not only whilst they're doing a challenge, but moving forward in their lives. It's just such a beautiful concept.

As someone who consults in the mental health nonpro fit space, I have yet to see such a platform or social good marketplace that integrates all of the components that you do in such an innovative and mindful way, and, as you say, it’s also a no frills, no BS corporate wellness product with two unique value propositions, allowing employees to improve their well-being while also doing social good. Where are you going next with this? Where do you see One Million Steps in five years?

AwareNow Podcast

ONE MILLION STEPS

Exclusive Interview with Ranjit Ghoshal https://awarenow.us/podcast/one-million-steps

RANJIT: Reflecting on the innovation side of it, the things I am proudest about include the food bank or the one person charity or the small business that just really has no time. After an event, I always go back to the charities and ask, “How difficult was this for you?” They actually start off with, “Let me tell you how difficult it actually is to do what we normally do. And the difference between the two.” That is where they now have something that they, as one charity said, “Million Steps are the tool in that toolbox that we know we can keep using because it takes so little resources for the benefit that you're getting.”

So where's the future? We see ourselves as a platform for wellbeing to tackle health inequalities. And that's a really important part of it for us. The fundraising element can really drive you forward and it’s a really important motivator.

We've learned so much since we started. And we're just a small bootstrapped team, but we've raised over $150,000 for charities, with almost 1 billion steps taken, which is half a million miles or 17 times around the planet. But remember, we did it because of the people who gave us their passion and energy, and because it was meaningful to them. And the stories of how it changed their lives too. So, next year in 2023, we're going to hopefully begin to answer our North Star question: “Can one person do something that can help raise $100 million for social good?” There's everything to play for, and we just want to start engaging now on a wider scale leveraging all the experience and knowledge that we've built up. ∎

ABOUT RANJIT GHOSHAL

Ranjit is the Founder and CEO of One Million Steps, building a healthier world through giving for charities, businesses and you. He believes socially innovative businesses can be a powerful force for social change. Before deciding to take the leap into the world of startups and technology, he spent 14 years working on the front-lines and in various strategic roles in homelessness prevention. Ranjit was also News Editor/Sub-editor of Big Issue Cymru, and served as Trustee of Shelter Cymru, The Chartered Institute of Housing Cymru, and TPAS Cymru. He currently lives in Cardiff, Capital of Wales, in the United Kingdom.

Learn more about One Million Steps: https://millionsteps.com

TAP/SCAN TO LISTEN

MCGUIRE

There are so many bears in the world…

TODD BROWN FOUNDER OF THE INSPIRE PROJECT & CO-FOUNDER OF OPERATION OUTBREAK

Photo Credit: National Geography

To tell you the truth, I have been thinking a lot about bears lately, and I blame two people. The first is the drone video of a man running from a bear (1), and the second person is the awesome Stewart Reynolds. If you bothered to check out the man running from the bear, do not worry. He is fine. It turns out that the video is authentic but staged because the trained bear was never going to hurt the man. But it got me thinking. At one point, I was worried about the man running because of the 800 lbs. of angry meat chasing him. After a few moments, I realized I did not need to worry about that bear, as callous as it may seem. It is not chasing me. I am not running for my life in the cold in the middle of nowhere. Ultimately, I hoped that man ended up okay, but it was not my bear. It just was not. There are so many bears in the world, and we can easily get bogged down in worrying about them. Even the ones that are not chasing us. So many issues; climate change, some terrible political policies being enacted, bullying, war, and famine. The world can be a really awful place, and I, like many of you reading this awesome magazine, want to help many people all the time. How can we narrow down our scope? How do we choose which bear? What are some simple strategies for understanding, dealing with, and helping conquer our bear?

Before we go any further, we need to take a quick look at two factors for engaging with an issue or bear. The first is that engagement is very much like a cone. When it comes to an idea or movement, most of the time, the top of the cone is wide and broad. For example, there is a terrible natural disaster several states over from where you live. The idea is, 'Let's all help the disaster victims!' Generally, there are many, many people willing to jump on board. But, as the needed actions begin to take more time and resources from the people willing to help, the pool of people begins to shrink. Think about it. We need to help the victims. Everyone can agree and get behind that principle. If there are web pages that pop up to help raise money for the victims, how many people will share the link(s)? The population of helpers is cut down. Now, how many people will donate money? The population of helpers is cut down again. How about repeated donations? Still fewer. Lastly, how many people will go to the location, donate time, and put forth an on-the-ground effort to help the people? Far fewer. This cone is not a criticism but an example of how the intensity of engagement shrinks the population's commitment over time. Financial resources, availability, and many other things are limiting factors.

The second factor is ‘passion by proximity’. Not only geographic or familial proximity but your heart's proximity to the issue. The more someone cares, the more the person is willing to help. The more eager they are to get involved, the deeper they will dive into that cone. If the issue affects their neighborhood, their friends, or their family, they tend to sacrifice more for longer. Generally, this is how we hone in on what we choose to dive into and how deep we dive, depending on our resources. Also, when it comes to resources, the more passionate we are about an issue, the more willing we are to stretch our resources, be it financially or time. With this, we must be realistic with ourselves before jumping into the cage with our bear. In sticking with the B.E.A.R. theme, I use the word as an acronym:

“Not millions of people joining her from around the globe. Just her.”

Your efforts are essential, but it is easy to become overwhelmed and feel like you are against the world. I would imagine that most people reading this are familiar with Greta Thunberg. If not, she is a climate change activist that has taken the world by storm (no pun intended- no, seriously, I did not plan it, but it happened). Most people know her and her efforts because of the resulting events featured in the international media. But she began small and local. On August 20, 2018, she skipped school by herself to protest. Not millions of people joining her from around the globe. Just her. On a local street corner. The same goes for Meir Kalmanson's Super Soul Party for the homeless. He began by himself in 2017, and now his efforts have grown to over 35 cities across the United States. Again, he was by himself in his hometown.

The lesson here is simple. Start small and local. Slowing down and understanding your bear is a longitudinal issue requiring you to take one step at a time and sometimes even rest (more on that later).

EXAMINE:

How much do you know about the bear?

Once you have found an issue that you are passionate about, investigate. Dig deep. One needs to ask the right questions before answering them. Once someone uncovers granular information, perspectives may shift, and new questions may arise.

For example, I am passionate about education, especially diversity within the field. My wife and I recently attended a local town hall meeting where we had a fantastic speaker present on the need for teacher diversity in our local schools. "We don't have enough teachers that are eight feet tall" (Not the demographic discussed, but you get the idea). Met with clapping, some 'mm-hmm's,' and 'that's right's.' the crowd was in solid agreement.

So, the bear is the school system that should hire more eight-foot teachers. While everyone was excited about hiring more tall teachers, I thought I would look at a few things before jumping on the bandwagon. I took about an hour digging through public records, demographics, teaching positions filled in the last two years, and other information. To not be wordy and confusing, I have organized the information in a more concise manner below:

· Town Population: ~20,000 people

· Current # of eight-foot tall people in the town: 11% (2200)

· Current # of eight-foot-tall people in town with college degrees (a prerequisite): 22% (484)

· # of eight-foot-tall college graduates to 40 years old: 193

· # entering the teaching field concerning our town demographic (1 in 10): 19

· Teaching positions open over the last three years: 16

· Eight-foot-tall teachers hired over the previous years: 17

· Percentage hired: ~90%

While this does not tell the entire story, it raises a few questions. What happened with the other two people? Were they given an offer but declined it? Were they qualified to teach but not certified to teach the specific subject matter or grade level open? I could not find that information, but the bear does not appear to be the town needing to hire more eight-foot-tall teachers but needs more qualified applicants specific to the demographic. With the qualified applicant pool being much smaller, the issue of diversity still needs to be addressed. BUT, how we tackle the bear and what the numbers tell us can change what type of bear. Instead of we need to hire more eight-foot teachers, the question shifts to how do we get more eight-footers involved in teaching—a whole new problem set because of understanding the minutiae of the issue.

“We all want to make a difference…”

RECRUITMENT:

How many people can you bring into the bear fight?

The last of our B.E.A.R. anagram reminds us that we are not alone in this fight and need to seek out like-minded people and organizations that may have already begun dealing with your speci fic bear. While the internet can be a scary place full of trolls, it can also be a unique opportunity to connect with others from around the world. I mean, think about it. With the advent of the internet and social media, I can instantly connect with others that may have been fighting the good fight for years that I was unaware of seconds ago. It is much like a good pyramid scheme. People who begin the fight are looking for others willing to join the effort. There is strength in numbers, as they say, and with a group, you can allow yourself to take time off. Rest. Recover. Others can fight while you take a breather to regroup and reenergize yourself. If there is not a local chapter or group, start one. Put yourself out there. People, because of passion by proximity, will find you. Maybe people are just waiting for someone to step up and take the lead.

Lastly, I want to say that when seeking out connections, be aware of confirmation bias. Confirmation bias is everywhere, especially using Google and other search engines. Con firmation bias is the tendency to interpret new evidence as confirmation of one's existing beliefs or theories. The algorithms in place on many social media platforms and search engines will spit out websites, articles, and posts that align with your search. For example, if I were to search for information on vaccines, the search would return suggestions far different if I searched ‘vaccines’ than ‘why vaccines work’ or ‘why vaccines don't work’. It may be wise to utilize the 10th Man theory as some governments have done after years of policy failures (5). Ultimately it is essential to challenge conventional wisdom. The aim is to look at things creatively, independently, and from a fresh perspective, actively engaging with and reconsidering the status quo. Many of us know the 10th Man as playing Devil's Advocate, and it is always worth a look outside of your perspective, as long as you have well-researched facts behind it.

We all want to make a difference, and there are so many things we want to change. It can become easy to be overburdened by so many bears out in the scary world. Before we jump into any action, we should take the time to decide if the bear we are fighting is our bear. If it is, are we ready to be realistic, take time to examine the issue, accept that this could be a long fight, and understand that we are not alone? Taking on a bear is scary, but without you, well, to quote Steve Trevor, "My father told me once, if you see something wrong happening in the world, you can either do nothing, or you can do something" (6). Maybe it is time to do something. ∎

References

1. https://www.snopes.com/fact-check/drone-video-bear-snow

2. https://news.trust.org/item/20190819233721-jaa90

3. https://www.cnn.com/2022/02/10/entertainment/super-bowl-parties-homeless-2022-iyw-cec/index.html

4. https://www.pnas.org/content/116/38/18888

5. https://arxiv.org/pdf/1803.03697.pdf

6. https://www.thestar.com/news/insight/2017/05/21/how-israeli-intelligence-failures-led-to-a-devils-advocate-role.html

TODD BROWN

Awareness Ties Columnist www.awarenessties.us/todd-brown

Todd Brown is a winner of multiple education awards, including the U.S. Congressional Teacher of the Year Award, U.S. Henry Ford Innovator Award, Education Foundation Innovator of the Year, and Air Force Association STEM Teacher of the Year. Dr. Brown is the creator and founder of the Inspire Project and cocreator of Operation Outbreak, which was named the Reimagine Education Award for Best Hybrid Program in the world. He is also an Education Ambassador for the United Nations and an Educational Ambassador of the Center for Disease Control (CDC).

Afghan women will rise…

LORI BUTIERRIES AUTHOR, NAVY VETERAN & MOTHER OF 2 WITH SPECIAL NEEDS

WE ARE STILL HERE VERSES ON VOICES OF AFGHAN WOMEN

Afghan women exist (5)

Even when forced back into invisibility “We are still here!” they insist (3)

Taliban ministers claim

That woman should be at home or in the grave (2)

Afghan women reply, “We will not be silent.” (3)

For human rights, we will die or at least be non-compliant

From 1996 to 2001, the Taliban terrorized Afghanistan (1) And now they are back in control.

But Afghan women state, “We are not the Afghan women of twenty years ago; we will not submit no matter the toll.” (4)

Like a flower that finds a way through the concrete, (7)

Afghan women will rise through the ruins of their country to challenge the Taliban’s way of doing things for the betterment of society.

Like they have for centuries against other powerful men hellbent on oppressing them.

‘SCARRED NOT BROKEN’ EXCLUSIVE COLUMN BY LORI BUTIERRIES

Afghan women have never been silent. The world just stopped listening.

Hear them now and do not recognize the Taliban as a legitimate government

They have not changed. (6)

Afghan women deserve to be treated better than second-class citizens.

We Are Still Here

Edited by Nahid Shahalimi https://awarenow.us/book/we-are-still-here

Excerpts referenced from the book are as follows:

1. “Between 1996 and 2001, the Taliban terrorized Afghanistan.” – Nahid Shahalimi (Pg. 9)

2. “During an interview conducted in March 2022, one of the ministers even went so far as to say the only two acceptable places for a woman are at home or in the graveyard.” – Nahid Shahalimi (Pg. 20)

3. “This time around, we will not be silent, for we are still here!” – Nahid Shahalimi (Pg. 21)

4. “We wanted to show the Taliban that Afghan women were not afraid, that they were not the Afghan women of twenty years ago.” – Razia Barakzai (Pg. 34)

5. “As we approached the presidential palace, we each held a paper lea “Afghan women exist.” – Razia Barakzai (Pg. 35)

6. “The guards fear social media because the Taliban still seeks to appear tolerant and to give the international community the impression that it has changed since the 1990s-which, by the way, it has not.” – Razia Barakzai (Pg. 36)

7. “But I believe in the flower that finds a way through the concrete.” – Waslat Hasrat-Nazimi (Pg. 70)

8. “And we must not recognize the Taliban as a legitimate government.” – Waslat Hasrat-Nazimi (Pg. 71)

9. “Yes, at times, we have had to take a step back because of the decisions of global powers or the powerful men and groups within our communities, but we’ve never been silent. The world simply wasn’t listening.” – Rada Akbar (Pg. 155)

LORI BUTIERRIES

Author, Navy Veteran & Mother of 2 with Special Needs www.awarenessties.us/lori-butierries

LORI BUTIERRIES is a full-time caregiver to two children with special needs, one child being terminally ill and physically disabled. Lori uses her life experiences and the medical knowledge she gained while serving as a Hospital Corpsman in the United States Navy to help others facing similar hardships. Lori focuses primarily on advocating for and educating others about the special needs, mental health, and veterans communities. Her long-term goal is to reduce the stigma associated with disability by talking about it with people of all ages, thus minimizing the fear and the mystery attributed to the unknown in this regard.

THE KINDNESS OF STRANGERS MEDICINE THAT SOOTHES

THE MIND, BODY AND SOUL

The challenges facing the world today are far-reaching and complex, and the solutions sometimes feel out of reach. But complicated problems can be tackled with simple solutions, even a simple act of kindness.

In honor of World Kindness Week on November 8-14, I want to share an experience that I had recently.

I spend a decent amount of time on the road. It could be for competition, a speaking engagement, or vacation. On a recent trip to the Windy City, I stood at the ticket counter waiting on assistance from an agent. Now, if you know me, you know that I show up to the airport with almost no time to spare. I’m so serious. I literally try to show up at the same time that the flight crew boards lol.

Per the airline’s policy, they’re allowed to provide a gate pass for a family member, friend, or whoever, to help a passenger with a disability through TSA and onto the gate. For whatever reason, perhaps improper training, the person refused to provide a gate pass for my escort.

Come on now. This is not the time to refuse me a gate pass. The flight was boarding!

After a respectful, but firm, exchange with the agent, I turned around with no gate pass in hand. I asked my escort to help me get to TSA.

I’ll just have to figure it out myself.

As expected, the TSA agent didn’t allow my escort through because she didn’t have a gate pass. Makes total sense.

And guess what?

The TSA agent says, “Did the agent not give you a gate pass?”

That’s funny. I was told they don’t offer gate passes anymore. Now I would be tasked with getting from the checkpoint to the gate on my own.

I was ready for the challenge.

But a voice from behind said, “I’ll help you sir.”

This gentleman overheard the conversation that I was having with the TSA agent, and he offered to assist me to my gate. He also had a flight to catch himself, so we were both rushing to our respective locations.

‘NO NEED FOR SIGHT WHEN YOU HAVE VISION’ BY LEX GILLETTE

Putting his own needs aside, he made sure that I was able to get my bag on the conveyor belt and walk through the metal detector. I held onto his shoulder as we hustled down the long hallway toward the gate. I don’t think he had much experience with guiding people who are blind and visually impaired.

We might have run over a couple passengers in the process haha. “Excuse me! I’m sorry!”

I made the flight just in the nick of time. The doors closed as soon as I sat in my seat.

It sometimes feels like helpful people are unicorns. You just don’t find them as often these days, and that’s a shame.

Kindness is like a medicine that soothes the mind, body, and soul. Our acts of kindness can bridge challenging gaps that others may be experiencing. Now, don’t get me wrong. There will be times where you have to “handle your business,” and that business needs to be handled immediately which might keep you from offering a helping hand. But it’s not always like that.

Princess Diana said it best… “Carry out a random act of kindness, with no expectation of reward, safe in the knowledge that one day, someone might do the same for you.” ∎

LEX GILLETTE

x Paralympic Medalist, 4x World Champion & Keynote Speaker www.awarenessties.us/lex-gillette

LEX GILLETTE has quickly become one of the most sought after keynote speakers on the market. Losing his sight at the age of eight was painful to say the least, but life happens. Things don’t always go your way. You can either stay stuck in frustration because the old way doesn’t work anymore, or you can create a new vision for your life, even if you can’t see how it will happen just yet. His sight was lost, but Lex acquired a renewed vision, a vision that has seen him become the best totally blind long and triple jumper Team USA has ever witnessed.

“It sometimes feels like helpful people are unicorns. You just don’t find them as often these days, and that’s a shame.”

BURT KEMPNER WRITER & PRODUCER

Know that I loved life wildly and deeply…

When I’m gone, Don’t just give me to the earth. I loved the wind and the sky, too. I fell under the spell of fire, hissing at me to partake of its secret knowledge. On bright days I skimmed the surface of the sea; on darker ones I plunged far, far below. Feed me to the elements.

I hope you’ll cry a little, not because I’m no longer here, But because I once was, And perhaps something I said or did Deflected you from a hurtful path Or kept you going down the right road when you felt alone.

Don’t bring flowers. Don’t bring food. If you spot an injustice, however slight, correct it. I’ll feel it like a kiss.

When I’m gone Know that I loved life wildly and deeply, Until it broke open my heart And spread like wind-blown seeds, Falling sometimes on barren ground And sometimes, somehow took root in Paradise.

When I’m gone You will still see me If you look out of the corner of your eye a certain way. You will still hear me if you catch a hint of laughter Amid wailing and lamentation.

The earth’s supply of beauty is diminishing. Add to it what you can and say I do this in memory of my friend, my loved one. I do it so that his light remains between two worlds.

ANA GABRIEL MANN CO-FOUNDER OF THE GO-GIVER MARRIAGE

The losses people with memory loss experience are hard to imagine or put into words.

BEING PRESENT

LOST AND FOUND IN THE MOMENT

In 1986, as I entered graduate school to study clinical psychology, I had just moved home to Western Mass where I had grown up. I was fairly wide-eyed about becoming a therapist, hungry to discover every facet of what forces and experiences shape our psychological selves, especially the impact that trauma and dif ficult experiences have on our psyche and ourselves. I was interested in writing about the issues people face when depression or trauma become an unexpected part of their psychological journey.

At the same time I was delving deep into Vipassana meditation, sitting 10-day courses in silence. Like many who are new to meditation, I had spent very little time trying to stay in the present and simply observe my own thoughts like clouds floating by. In fact, my mind had its own agenda. As I went deeper into meditation, inane jingles from TV commercials that I hadn’t heard since my childhood rose up, playing their ridiculous tunes and lyrics over and over. As I quieted my mind, the deeper recesses of my unconscious showed me that every minute of every day of my entire life came with its own track of videos, complete with music and dialogue—and my mind had recorded it all.

In the midst of my new course of study and my new exploration of meditation and quieting the mind, my husband and I were hired to a full-time caretaking position for a lovely woman in her early seventies. Isadore, who had early onset Alzheimer’s, was both brilliant and charming. Her husband, who prior to retirement had been head of the German department at the local university, had died from early onset Alzheimer’s the previous year, though she never mentioned him nor even seemed to remember him. Isadore herself had been a brilliant first-chair violinist. Her neighbors, fellow faculty in the music department at the University of Mass, continued to engage her in playing trios and quartets with them in her living room, but Isadore’s ability to follow music from page to page was limited, and they soon realized the most successful sessions were when they chose pieces she had memorized many years before.

I began to observe that when she successfully played a familiar piece from start to finish without confusion, she would be buoyant with joy. In those moments when she got lost trying to follow sheet music of a less familiar piece, her anxiety and sense of overwhelm were visible, as she felt her sense of Self and the ability to organize her experience slipping away. It was evident that Isadore—like many people in the early stages of Alzheimer’s—was keenly aware of those moments when she couldn’t keep a clear grasp on her ability to organize her ability her present reality.

Some evenings, as I was making dinner, Isadore would circle through the kitchen as many as 50 times in the course of 45 minutes, each time asking again what I was making for dinner, each time telling me once more how wonderful it smelled. Every time, I would tell her I was making baked chicken, and she would forget before she returned and asked yet again. I quickly learned that if I said, “Isadore, I just told you,” she would become agitated—yet with no ability to remember why. Her entire evening could be derailed emotionally because she had lost her ability to organize through memory. She had lost of a piece of herself.

I could meditate and hear that 1960s jingle rise up in my mind and know exactly where and when I had heard it. Isadore could not remember what was for dinner 15 seconds after I told her.

We lived with Isadore for seven years, so I was able to see her decline in mental, social, and emotional organization. When her dearest friends would visit, she knew they were someone she had feelings for, but could not organize enough to converse or remember who they were. And yet, she could do things that surprised us.

At night, she would get up and wander around the house, sometimes leaving silverware arranged in different designs on the kitchen counter. I photographed these designs and showed the pictures to our neighbor—who pointed out that the arrangement of knives and forks and spoons exactly reproduced the first bars of a famous piece by Brahms.

Isadore was writing out sheet music on her kitchen counter in cutlery! Even though her frontal cortex was unable to play the music or articulate the name of a piece she was listening to, her mind had recorded the patterns of the notes in exacting detail.

Most of her friends no longer visited because they saw her as essentially absent, but what my husband and I and her inner circle of friends saw was a beautiful, graceful woman holding onto whatever fragments of herself that she could access, and beyond that, living her existence moment to moment, enjoying the call of a white sparrow, or the sound of our neighbor playing Chopin on the piano in our living room.

Three years later, after writing my thesis on the loss of self and the need for long-term memory support in the treatment of persons with Alzheimer’s, I joined the faculty of my Master’s program, where I had another memorable and deeply personal experience in working with people with Alzheimer’s and memory loss.

I was asked to facilitate a therapy group at a “field work” site for our students in a day treatment facility for persons with memory loss. This would allow our students to participate in using music, movement, and long-term memory recall exercises to facilitate communication, connection, and relationship for the group members. My grandmother, then 74, was a client, and I was assured that she would not be in the group I worked with. Nevertheless, when I walked into the therapy room on my first day, one of the eight members present was my grandmother.

It wouldn’t have been appropriate to removed her from the group right then and there, and she clearly didn’t know who I was, so I proceeded to lead the group. As the music from sway and sing the lyrics they all knew so well. They all became highly engaged, and several who were typically nonverbal became quite active and involved. These long-term memories offered them a solid roadmap to laughing, swaying, dancing, and socially engaging in a way that was normally unavailable to them. The movement and music also provided them access to a level of organization and memory that had previously seemed lost.

At the end of the session, the members were led out of the room one by one. As my grandmother sat waiting, she stared at me... until she finally spoke words that still make me well up with emotion. She said, “I know you. You’re the little girl I used to bake bread with in the kitchen.”

For my entire childhood, my grandmother and I had been very close. Every Friday night, I would sleep at her house overnight, eating popcorn on the couch while we watched television together. And every Saturday morning, for more than 10 years of my life, we baked bread together, playing gin rummy on the kitchen table while it baked. I adored her, and I know the feelings were mutual—because the moment she spoke those words, I walked over, wrapped my arms around her, and said “Yes, I’m the little girl you baked bread with in the kitchen.” And in that precious moment of being fully present, she looked me directly in the eyes, welled up with tears and hugged me back.

Isadore and my grandmother were among my greatest teachers. They taught me that being mindful is about being present, and that being present is about staying awake to the preciousness of each moment.

The losses people with memory loss experience are hard to imagine or put into words. Every aspect of their sense of Self and personal identity vanishes as they lose their ability to remember the people they know and love. And yet, in the deep recesses of our unconscious mind, the lyrics to an old song live on, along with the memories of a little girl from long ago. ∎

JOHN & ANA MANN

Co-Authors of ‘The Go-Giver Marriage’ www.awarenessties.us/john--ana-mann

John David Mann is coauthor of more than 30 books, including four New York Times bestsellers and national bestsellers. His classic 2008 parable The Go-Giver (coauthored with Bob Burg) earned the 2017 Living Now Book Award’s “Evergreen Medal” for its “contribution to positive global change.”

Ana Gabriel Mann, M.A., earned her degree in clinical psychology before going on to serve as an educator, therapist, corporate trainer, speaker, and coach. She currently coaches Go-Giver Marriage clients and leads the Go-Giver Marriage Coaches Training Program, training coaches from around the globe.

Her tears of joy said it all.

GREG SCHNEIDER FOUNDER & CEO OF OPERATION RAMP IT UP

OPERATION RAMP IT UP

SERVING VETERANS ONE RAMP AT A TIME

Operation Ramp It Up is on mission to provide mobility to military veterans, their family members, and ultimately anyone who may have a physical disability, by installing aluminum wheelchair ramps to their homes. Founder and CEO, Greg Schneider, hopes to enrich the lives of others one ramp at a time.

ALLIÉ: In service to those who have served our country, you are supporting disabled veterans one ramp at a time. Love to hear the story of how this all started.

GREG: The initiative began with our first wheelchair ramp event in 2014. The ramp installation was with a United Way agency partner dedicated to providing low-income, elderly, and veteran community members with a higher quality of living. A volunteer team, made up of several UPS employees, built a wheelchair ramp for the widow of a deceased veteran. Throughout several conversations with her regarding her need for the ramp, her late husband, and his military service, her story continued to unfold and was fascinating. Words cannot express the grati fication experienced at seeing a veteran’s family member come out of their home for the first time without any assistance. While using the

CLICK, TAP OR SCAN TO WATCH NOW

EXCLUSIVE INTERVIEW WITH GREG SCHNEIDER

SCHNEIDER FOUNDER

The NFL was a grant we applied for during their ‘Salute to Service’ opportunity. We were chosen a few years ago as a grant recipient.

GREG

& CEO OF OPERATION RAMP IT UP

have installed or recycled over 300 ramps throughout 43 states.”

ALLIÉ: True to your name, you are continuing to ‘ramp it up’ with more and more ramps being installed every year. How many have you currently installed, Greg? And where?

GREG: We have installed or recycled over 300 ramps throughout 43 states.

ALLIÉ: As we know, teamwork makes the dream work. Awareness Ties has proudly been a partner of Operation Ramp It Up with our ‘Selfies To Support Veterans’ campaign that we conducted with Flex Seal who served as a sponsor providing your organization with $10,000 to support your work. The connection made with Flex Seal turned into an ongoing relationship. Phil Swift, CEO, Inventor, and Spokesperson for The Flex Seal Family of Products, had this to share…

“Operation Ramp It Up is a great program that we’ve been proud partners with for nearly two years. Supporting veterans who sacrificed and gave so much to our country is important to us at Flex Seal. And giving back to our community is something we think about daily as a part of our company mission. We look forward to continuing to support Operation Ramp It Up.”

I’d love to hear about their continued support for your work to serve veterans.

GREG: I am excited to have a business relationship with Flex Seal and its Founder, Phil Swift. Through the “Sel fies to Support Veterans” campaign, we raised $10,000.00 which helped install two ramps for two families. They were so moved by our projects that they then funded the designing and wrapping of our business trailer. It was an incredible contribution to our organization. We continue to be annual partners with them providing more ramps for those with mobility issues.

ALLIÉ: Can you share more stories about partnerships that have helped you continue your work? One story I’d like to hear is how you teamed up with the Cincinnati Bengals.

GREG: The Bengals, Xavier University, Arlington Memorial Gardens, and Kendra Scott are just a few of the local organizations that have sponsored events for us. The NFL was a grant we applied for during their “Salute to Service” opportunity. We were chosen a few years ago as a grant recipient. Once the Bengal’s attended an event, they were hooked and wanted to be incorporated into our projects every year. We are hopeful with our exposure on November 20, 2022 national Sunday night game, that more NFL organizations will step forward and sponsor a ramp in their respective cities.

ALLIÉ: We can’t talk about Operation Ramp It Up partnerships without having a conversation about UPS. You’ve worked for UPS for 43 years and 1 month. Your dedication has been reciprocated, as UPS has been a proud sponsor of Operation Ramp It Up. Love to hear your thoughts here.

GREG: I have been involved in over 25 different philanthropic organizations all through UPS. The ramps just seemed to make the biggest impact and had the strongest need. UPS has supported our effort financially and with the most volunteer hours. UPS transports ramps for us throughout the country. UPS Airlines has flown ramps to Alaska for us

“We

GREG: (continued) and UPS management volunteers on every project in their area. I am where I am today because of the support of UPS on so many aspects. Our non-profit is a group effort by so many. This organization only works because of the hard work, input, volunteering, sponsorships, and compassion of so many. We may be the facilitators but without the goodness in mankind, we could never do this alone.

ALLIÉ: So many people benefit from your work, Greg. How have you personally been rewarded by your work?

GREG: Every time a new ramp recipient takes their maiden voyage down their ramp, the entire team is rewarded. There is no way to describe the incredible feeling you get when you realize the freedom you have provided to so many. It is not just the lives of the ramp recipient that are affected. Most of our ramp recipients are unable to go to the grocery, doctor’s appointments, retrieve their own mail, take out their own trash, take their therapy pets on a walk without assistance. The friends, family, neighbors, caregivers and entire community bene fit from the ramp build as well. We have been blessed with a wonderful life and feel like giving back to a society and to the veteran community that has sacrificed so much for us is our privilege and am so grateful to be able to contribute. ∎

“There is no way to describe the incredible feeling you get when you realize the freedom you have provided to so many.”

Creating meaningful discomfort for my children didn’t mean being reckless.

CHARLES SCOTT EXECUTIVE MENTOR, AUTHOR & FOUNDER OF TEAM SEE POSSIBILITIES

MEANINGFUL DISCOMFORT THE BIRTHPLACE OF RESILIENCE

At the age of thirteen, Charles decided to run his first marathon with his father. About half way through, his father asked, “You holding up ok?” Knowing he could not keep up with his father’s four-hour running pace, Charles responded, “Yeah, I’m fine.”

“Ok. Then I will see you at the finish line.”

And just like that, Charles watched his father quickly disappear ahead of him.

Eventually Charles noticed that all the runners were passing him by. Hours later, he noticed the sweeper vehicle coming up behind him, and someone asking if he wanted a ride to the finish line. Charles refused to get in the vehicle. He was finishing this race on his own terms.

About a mile left of the race, his dad met with him, and they ran through the finish line together. Afterwards, Charles felt like a failure being dead last. But then, his father said something that would make a lasting impression. He said, “I’m really proud of you. You set this ambitious goal and when it became too much, you did it anyway. You finished. This will serve you for the rest of your life.”

And it did as an athlete, executive, husband, father and mentor.

In 2009, Charles designed a 2,500-mile bike trip across Japan with his son, Sho, who was 8 years old. They would complete the trip in 67 days. In 2011, he took Sho, 10 years old, and daughter, Saya, 4 years old, to bike the circumference of Iceland. A year later in 2012, the three cycled in Europe from Munich to London. Then, they retraced the Lewis & Clark Trail in 2013, cycling 1,700 miles (the other half of the trail was covered by car). Sho was 12 years old and Saya was 6. In 2014, they took a 1,000-mile roundtrip bike adventure from Manhattan to Niagara, and finally in 2016, Charles did a roundtrip bike tour with Saya from Tokyo to Kyoto. Saya was 9 years old.

When Charles and Eiko became parents, they wanted their children to build their relationship with nature and people across the world. They wanted them to trust themselves fully and know that they are capable of doing hard things. They also wanted their children to discover their grit, persistence, endurance and resilience that would eventually be relied on off the bike trails, whether it was enduring calculus lessons, resolving challenging relationships or managing solutions after disappointments.

Charles said, “If you are afraid of discomfort, you will shut down all kinds of growth opportunities that will be available to you.” He recalls a mantra that he shared with Sho as they were preparing for the Japan bike ride, “Kids can do a whole lot more than most adults think.” The only time that Sho would question his abilities was when another adult told Sho that the trip is too hard for him. He looked at his dad and asked with some doubt, “Is this too hard for me?” His dad said no.

“When you share physical challenges together with your children, particularly in nature, you become teammates that create a really special bond.” – Charles Scott

When Charles designed these bike trips for his children, he considered their safety as priority one through ten, a promise he made to Eiko. He shares that “Creating meaningful discomfort for my children didn’t mean being reckless. It was the most carefully planned excursion that I had ever planned in my life as a competitive athlete and adventurer.”

“Meaningful discomfort is the birthplace of resilience.” - Charles Scott

‘THE DECIDED HEART EFFECT’ EXCLUSIVE COLUMN BY SONJA MONTIEL

During these trips, there were times when parenting was a challenge. Sho had three major meltdowns during the first week of the Japan trip. Charles recalled, “I wasn’t doing it right. I was stressed out and anxious. I was impatient, and I became a lecturer. It was just hard. This happy-go-lucky guy became that yelling parent. Me, a yeller. It was a low moment.”

Charles knew he had to slow down for his 8-year-old. When he invited Sho to become a participant in the decisionmaking process during the trip, like taking breaks to play at cool-looking video arcades, there was a change in their relationship. They were experiencing a journey together. They were becoming teammates.

There was a significant shift that happened when Charles saw his children as teammates during these excursions. He said that his children became strong mentors to him, reminding him that learning never stops no matter how old you are. His children modeled for Charles how to stay in the moment, that things like dirt can be more awesome than getting to the destination as quickly as you can. They also taught him that everyone has flaws, and his children can help be a resource to help with those flaws (like having a Gatorade and Snickers at hand to avoid his “hangry episodes”). His children ask for help much more quickly than he does, and helped Charles realize that he doesn’t have to suffer for long periods of time before asking for help. Finally, the tables can turn when it comes to encouragement. During the bike trip with Sho in Japan, while going through the Japanese Alps, Charles started to have his own meltdown. Sho responded “Daddy, I believe in you. You can do this!”

MEANINGFUL DISCOMFORT

Written and Narrated by Sonja Montiel https://awarenow.us/podcast/meaningful-discomfort

You see, in the experience of something challenging, Charles believes that meaningful discomfort can still be joyful, no matter the age. Currently, as an executive mentor working with corporate leaders, he brings the same learning lessons to his adult clients by having them respond to the following prompts:

1. Identify what it means to craft a meaningful life to you.

2. Plan your experiences in a way that invites others to be a part of the experience.

3. Consider how you are a service to yourself and others.

Charles wrote two books, Daunted Courage: A Family’s Bicycle Adventure on the Lewis and Clark Trail and Rising Son: A Father and Son’s Bike Adventure across Japan. He said that these books are the legacy he wants to leave his children with, sharing how committed he has been staying true to himself and who he is in this world while becoming the father he intended to be. The foundation of it all? Charles proudly claims that it’s “love, love love.”

Sho graduated from college last spring and is working for an electric unicycle startup in San Francisco. He’s a sponsored athlete in the emerging sport of electric unicycle racing. Saya is currently a sophomore in high school. ∎

SONJA MONTIEL

Co-Founder of The Decided Heart Effect www.awarenessties.us/sonja-montiel

SONJA MONTIEL has served more than twenty-one years in the college admissions profession, having extensive experience in the areas of freshman, transfer, and international admissions. During her time working with thousands of teens and young adults worldwide, she began to witness many societies creating an unhealthy college-bound culture that misguides our young people in their pursuit of living a life of ful fillment. In 2021, Sonja met Hilary Bilbrey to begin something amazing. They created The DH Effect – The Decided Heart Effect with a mission to guide individuals, schools, and organizations to build high-trust relationships and belonging through self-discovery and personal accountability.

MACAULEY

ERIN

LABELED MY SCHIZOPHRENIA JOURNEY

About eight months ago, I was diagnosed with schizophrenia. At the time, receiving this diagnosis broke me - I thought my life was over. My main and only symptom that "qualified" me to be slapped with this "label" was: auditory hallucinations.

The onset of my hallucinations came about two years ago when I had a psychotic episode where I had almost no insight into my own mental health. This was extremely challenging for someone like myself, who is a nurse by training, and a loyal mental health advocate. I'd known and learned to manage some of my more generalised mental health symptoms before (because we all have them at times in our lives), but I didn't think I was ever a "candidate" for symptoms like this.

During this episode, I believed strongly that people were filming me in my bedroom and bathroom...that people in my neighbourhood were Air BnBing houses to people who were stalking me, just to put fear into me and my life. I thought ASIO (Australian Security Dept.), and the army were crawling around in my roof cavity. It was severe.

I even went so far as to contact a lawyer and the best QC in Western Australia as I wanted to take legal action against these people. The hallucinations I was having all came in the form of screaming voices of people I know - so I actually contacted friends to let them know my legal team would be in touch with them to protect them, because others had committed identity theft - in order to scare me. It wasn’t until later I realised there was nobody to take legal action against - my brain was playing tricks on me.

I told Eric from #SameHere, who I'd been friends with for five years through the advocacy world. I also told some other friends about this, with the belief that it was actually happening. Eric, who lives in New York, got so worried about me that he called my local police station in the country town where I live here in Australia, to do a wellness check.

My hallucinations had completely taken over my sense of reality. They WERE my reality. It was only after they stopped and I came out of this episode, that I realised how obscure they were… and traumatising. To this day I’m still haunted by that episode. But fast forward a couple of years, and I am now in a place, through therapy and my own hard work, where I can detach from the auditory hallucinations I get, and see them for what they are - SYMPTOMS of my mental health. That's right, schizophrenia is just a label for the symptoms I have. It’s just like anyone else has symptoms of their own mental health - insomnia, ruminating thoughts, heaviness, emotional numbness, etc. The label isn’t who I am. The label isn't who you are.

When I get auditory hallucinations now I am completely aware that they aren’t real. I can sit back and listen to them without judgement of myself because I know they are false. The theme is always the same - that someone has set up a camera in my room and is recording everything I do, down to the medications I take. They also record what I’m writing on my phone or computer, like they can see everything. This is where through my healing journey I've learned to rationalise and tell myself that nobody has a camera set up, the voices are hallucinations (unless there are tiny people living in the walls :)), nobody can read your phone or computer and nobody is out to get you. There is nothing tangible about them - like when you have a conversation face-to-face with a friend - that is tangible as they are right in front of you. Auditory hallucinations are not tangible and being able to see them for what they are has totally changed the way I deal with the SYMPTOMS of this label of Schizophrenia I have been given. I am able to go about my life "normally" because I have learned to tame the symptoms, much like other people do with their own mental health.

Written and Narrated by Erin Macauley https://awarenow.us/podcast/labeled

“…don’t be fooled by the label of schizophrenia or any label for that matter.”

My symptoms exist on a spectrum, like everyone else's mental health. There are many others like me who can completely detach from the hallucinations. They live with and manage them for however long they last.

It isn’t easy getting to that place of insight, but I promise you that if I can do it, you can too. Think of your hallucinations as negative thoughts and let them go...just like we learn to do with other mental health symptoms. Realise you are in control of your mental health and you will get through this. And don’t be fooled by the label of Schizophrenia or any label for that matter. It’s just a word in an attempt to classify similarities…it’s not who YOU are. We are all human. We all struggle. We all have symptoms. Let's all work together, not allow ourselves to be separated by buckets.

About the Author

Erin Macauley is a mental health advocate and Chief Operating Officer of Accelerating Social Good (ASG), a social cause consultancy with a mission to build a world where the mental health care system does not let anyone down and we all can flourish. ASG is a stigma-free workplace committed to ensuring their team has needed mental health programs and supports; and practices empathy, caring, kindness and compassion 24/7. Erin is currently on a mental health sabbatical during her recovery until she feels well enough to return to work.

Learn more about Erin and her work with Accelerating Social Good: www.acceleratingsocialgood.com/meet-our-chief-operating-officer

REICHERTER

INSPIRING MY GENERATION

A STUDENT’S MISSION TO SAVE LIVES

Growing up, Francesca Reicherter struggled with a fear of not being good enough. By 12, she developed severe anxious distress resulting in frequent panic attacks. When she talked about her feelings, she was met with criticism for being vulnerable. Following high school, she struggled with this determination to be good enough and be heard. She put a lot of pressure on herself to be the best. While taking a full college course load resulting in graduating in just 2.5 years, her mental health declined.

Her grandparents were in a car accident three weeks before graduation, where she lost her “papa.” She immediately went to her “nonna’s” side and slept in a hospital chair beside her throughout her recovery. Without knowing how to cope with loss or stress, she attempted suicide on Christmas Eve, and 27 days later, her uncle died by suicide. The added loss of her uncle became overbearing, and again without the tools she needed, she attempted suicide two more times, landing her in a psych ward. In the psych ward, she was misdiagnosed and prescribed an antidepressant resulting in a manic episode, revealing her accurate diagnosis: bipolar II disorder. Upon receiving the proper diagnosis and appropriate medication, she began developing the tools she needed to promote and maintain her mental wellbeing.

Three years have passed. She is currently a student at Pepperdine University studying for her master’s in psychology while running a nonprofit for mental health awareness and suicide prevention. No one spoke about mental health when she was growing up; therefore, she spent so much time suffering in silence and hating herself for it. She turned her pain into action and began developing the tools she never had but always needed to bring hope to those who needed it most saying, “I am an advocate so one day, everyone can seek help without feeling wrong or ashamed and access high-quality preventative and responsive resources.”

Francesca is the founder of Inspiring My Generation Corporation, a 501(c)3 nonpro fit organization on a mission of suicide prevention through awareness, conversation, education, and support. They accomplish this through three main programs:

Podcast: Normalize The Conversation is a podcast to amplify people’s voices, information, and stories worldwide.

Encouragement Card Program:

To provide emotional support, hundreds of handmade cards of encouragement are sent to patients in psychiatric hospitals.

Education Program: The Education Program is two-fold, including their workbooks and workshops based on the workbooks.

“You Are Not Alone: The Workbook” is a guide to help youth build af firmations, learn self-love, express emotions, host a supportive mental health conversation, and build coping skills.

“I AM” is a guide to help the reader learn how to identify who they are, how they feel, what support they want, and how to advocate for themselves.

Workshops are built based on the workbooks. Custom workshops are adapted to the audience’s age range and specific needs. The standard workshops include Mental Health Conversations: Learning to Support Others and Reach Out For Support; Learning Positive Self-Talk and Coping Skills; and Learning to Love Yourself: A Guide To Building Affirmations and Self-Love Statements. Free virtual workshops are coming soon, hosted by the Peer Support Coalition of Florida.

When asked what we can do better as a society to address mental health issues, Francesca shared that it is crucial to open the conversation on mental health in a supportive way saying, “We are not all doctors, experts, or professionals; we cannot all treat someone for their mental health condition; we all can talk about it. We can talk about how we are feeling, check in with our loved ones, offer validation, support, and space for someone struggling, and educate ourselves on warning signs and local resources available.” It is ok to not know what to do, but it is no longer ok to be silent about something impacting at least 20% of the population.

Francesca shares that kindness saves lives, and it is something that we are all capable of and in need of. Growing up, she was not surrounded by kindness. She was teased, invalidated, and gaslighted when she expressed any form of distress, whether it was sadness, frustration, or fear. If someone had been kind and given her a space to truly feel, express herself, and be heard, she may not have felt like she needed to struggle in silence for 20 years.

Her advice for people struggling with mental health is, “If you are not OK, that is OK, but you do not have to stay feeling not OK, and you do not have to be not OK alone. Reach out. Someone out there will listen to you. YOU DESERVE to feel heard and supported. There are so many people out there who value you and your life. Reach out, know what you deserve, and ask for what you want/need. And always hold on to hope even when you feel hopeless. It gets better, not immediately and not easily, but one day you will start to feel better.” ∎

CHANNEL KINDNESS

A Project of Born This Way Foundation www.channelkindness.org

Channel Kindness is a digital platform created by Lady Gaga’s Born This Way Foundation. It is a safe space for young people to tell their stories of kindness, resilience, and community. By highlighting the people and organizations that are doing good in their communities, Channel Kindness’ audience is inspired to create a kinder and braver world, one story at a time.

“It is ok to not know what to do, but it is no longer ok to be silent about something impacting at least 20% of the population.”

988

SUICIDE & CRISIS LIFELINE

988 has been designated as the new three-digit dialing code that will route callers to the National Suicide Prevention Lifeline (now known as the 988 Suicide & Crisis Lifeline), and is now active across the United States. When people call, text, or chat 988, they will be connected to trained counselors that are part of the existing Lifeline network. These trained counselors will listen, understand how their problems are afecting them, provide support, and connect them to resources if necessary.

MICHAEL TOY DATA PROTECTION ENGINEER

MEET MICHAEL TOY

A CONVERSATION ABOUT MENTAL HEALTH, RACE AND MORE

Michael Toy was born in the inner city of Milwaukee, Wisconsin and considers himself a city and country boy. As a young boy, Michael remembers Milwaukee being a great city, however, the city changed during the 1980s. He enjoyed living in the city and grew up around lots of relatives who lived in the same area. He has so many good memories and his favorite were the winters in Milwaukee. His parents moved to Belzoni, Mississippi in 1983 and then again in 1988 after relocating to Louisiana then back to Milwaukee. Michael and his older brother did spend summers in Milwaukee as kids with their cousins and their grandmother. The times were good visiting Milwaukee, as he enjoyed seeing the farms, wide fields, and the dirt & gravel roads. The air in Milwaukee was fresh as well. As an adult, Michael makes sure that when he relocates to various areas, he still tries to connect his environment with a country vibe, but still a location that is near a metropolitan area. He believes he gets to experience the best of both worlds while living in the country but still incorporating city vibes.

MEAGAN: To your comfort level, can you speak about your military experience?

MICHAEL: I joined the Marine Corps after graduating high school. Joining the Marine Corps served as a dual purpose for me. I wanted to serve, but I also needed an escape from the environment I was in. At that point in my life, I had experienced lots of trauma and I wanted to go somewhere where I didn’t have to worry about my wellbeing. From birth to 8 years old, my life was GREAT. From eight years old and on, life was difficult.

I didn’t feel loved, wanted or that I was important to anyone, so going away to the Marine Corps and staying seemed like an even choice at the time.

I received a scholarship to play JC basketball in college, but I didn’t see that as a viable path, and I can’t say why even until this day. I entered bootcamp just before Operation Desert Storm. I entered with an MOS (Military Occupational Specialty) in Avionics. It was a very cool purpose to have and enjoyed it for the most part. I served four years and decided not to reenlist and from there, I moved to Atlanta, Georgia.

MEAGAN: Your current profession is in information technology. Can you speak about the lack of diversity within the technology space and what are some changes you feel need to be made so that more people of color are recognized in that space?

MICHAEL: As a young kid, I worked for my great aunt where she would take out a group of people to cotton fields to chop cotton. These were the times when people used a ground tool to remove the weed from around the cotton plants. I remember getting paid $20 a day for my work and I also remember it being extremely hot working in the fields. I did not like the work; however, it did put money in my pocket. The next summer I was fortunate enough to land a job at a fish hatchery for a catfish farm. That was the best summer job that I could have asked for and I felt like I went from working in hades to working in heaven. Once I left the military, I worked in a few fields, such as warehousing, restaurant management, construction and even day laboring. In 2000, I decided to go back to school and major in Computer Information Systems (Computer Programming) but worked odd jobs for the next 5 years during and after leaving school. In 2005, I landed a job in an electronic store which paved the way for the field I currently work in. My current position is a Data Protection Engineer.

“I still wear the wounds from experiencing racism when I was young.”

MICHAEL: (continued) In my opinion, the information technology field doesn’t lack diversity as there are plenty of different cultures, but I do see a shortage specifically of African Americans in the field.

It is essential that parents start teaching their kids at a young age to possess a skill that they can parley into a 6- figure salary by the age of 25. I am always willing to help and train other people of color who want to enter the information technology profession. I don’t think it would be anything cooler than to help a black person enter this profession.

MEAGAN: Please share how the mental health of black men is challenged by the stigma, racism, and police brutality?

MICHAEL: I’ve experienced racism periodically throughout my life. So, I have no misconception on what racism is and how black people have been treated. In the last 10 years, I have not experienced any overt racism. I say this not to say I’m above unfair treatment or don’t believe racism exist as I know it does. I know that I could face an encounter of racism tomorrow.

I still wear the wounds from experiencing racism when I was young. My first incident was at the age of 15 years old. It does weight on me, knowing that I can’t live the same free lives as others. The next incident of racism, even if it has been a long time could quickly come no matter who you are, where you work or how much money you have. It’s like living with an impactful condition that I know could strike at any time and there’s no preventive measure myself or the doctors can put in place. A person can eat right, sleep right, and even place themselves in a bubble environment but nothing can truly protect a person from becoming another victim of police brutality. Police brutality and racism are scary, as I think about my boys and what they might encounter as they get older.

Life is a wrecking ball and people must be cognizant of where they are, how people may see them in the moment, what they say, how they move, what they are wearing, but also not forget that they have all the other responsibilities every other adult has. It can be a lot. It brings on anxiety. I wouldn’t doubt this behavior contributing to some of the conditions we tend to develop in the black community.

MEAGAN: Why do you think mental health is at times overlooked, when it comes to men, especially black men? Do you think that speaking about your struggles with mental health comes across as weak?

MICHAEL: In my opinion, it’s partially because we’ve just dealt with it. We take what life throws at us and we keep moving forward. We have not stated that we have a problem for the longest time. There’s only intervention when we start doing things that affect other people negatively. So, the combination of us sticking to the status quo and feeling as if we are okay and we are not okay is an issue. A few years ago, my number one priority was keeping my family secure in every way possible.

Having a great quality of life is important and I have found that there are some things that help with managing mental stresses. Time way from the daily riggers of life helps reset me.

MEAGAN: How can people and communities mobilize to create positive change? What barriers do you see?

MICHAEL: I think it is important to win the younger generation over. I don’t have any current solutions on how to accomplish that, but I think mobilization would be a lot easier. So many of them are engaged and are aware of the issues we face but we need many more. One barrier is how distracted we all are now within the world.

MEAGAN: If you could send a comprehensive, empowering statement to MEN around the world, what would it be?

MICHAEL: Let God into your life and seek him actively through prayer and his word. Love yourself. Figure out what ‘peace’ is to you and protect it. It’s ok to acknowledge your cracks when you see them. What do you do when you’re walking around your home, and you see a crack say in the wall? To take steps to fix them because you want to prevent a bigger issue later. We must see ourselves in the same manner and we must take steps to fix our issues because they can become bigger issues. When you recognize something about yourself you don’t like, acknowledge it, and get to work fixing it. Rinse and repeat. Don’t worry about things. Know that you have value and consider life is a walk slowly to perfection. Put your all into anything you do and be okay with it no matter what the results are. ∎

MEAGAN COPELIN

Founder of Mental Rich www.awarenessties.us/meagan-copelin

MEAGAN COPELIN is an international speaker, author, empowerment coach, blogger, contributing writer and podcaster. She is the founder of Mental Rich, a mental health company & brand, dedicated to helping young girls and women who suffer from mental illnesses, steaming from abuse, abandonment, and rejection. Meagan’s passion is to become a trailblazing voice for young girls and women worldwide. Drawing on her own experiences of mental illness due to abuse, rejection, and abandonment, Meagan uses her words to encourage others to build a home within themselves; to love, live, and create fearlessly. Her tremendous projects and efforts have helped her to be featured on several platforms for the purpose of empowering women to tell their story from struggle to success and live up to their full potential.

HEATHER OLSON FOUNDER AND BOARD PRESIDENT OF MI LIFE IN NUMBERS

MI LIFE IN NUMBERS BEHIND

Heather Olson has been type one diabetic since March 23, 2006. She graduated from Grand Valley State University in 2019 with a B.S. in Health Communications and Nonprofit Administration.

Dedicated to supporting and empowering people living with type one diabetes, Heather is the Founder and Board President of MI Life in Numbers.

ALLIÉ: Numbers never lie. They tell numerical stories. When it comes to type one diabetes, the stories told by numbers change every day, and sometimes every hour. For those unfamiliar with type one diabetes, please tell your story and why numbers are such a vital part of your life.

HEATHER: I was diagnosed with type one diabetes when I was 7 years old (just about to be 8). I had not been feeling well and we thought I had the flu, but when I got to the ER they had told me I was in a diabetic coma and that I was going to be rushed to Bronson’s Pediatric Unit. It was such a scary time for my family and I as we transitioned to a whole new lifestyle. I had to learn how to count carbs, give myself insulin through injections, check my blood sugar, and everything else that comes with diabetes. I also was a very active child, so this had a huge impact on going to sporting events and dance classes. This meant I always had to be prepared for low blood sugars or have extra

Our

HEATHER OLSON FOUNDER AND BOARD PRESIDENT OF MI LIFE IN NUMBERS

mission is to support and empower people living with type one diabetes.

days, 2+2 does not equal 4… and some days it does.”

HEATHER: (continued) nurse was also type one diabetic, so it helped ease my mind that I could talk to her about everything and she knew what it felt like to be in my shoes. Numbers are such a vital part of my life because everything is measured in numbers for diabetics. The non-diabetic person sits down for dinner and eats their meal without thinking twice. Diabetics have to count their carbs, figure out their insulin intake and how many units to bolus, figure out their current blood sugar and how that impacts the meal they are eating, and so much more. Those numbers tell us if we did a good job at measuring our calculations for each part of the day and help doctors to know where our strengths are and where we could use improvements so we can live a healthy life.

ALLIÉ: While your life is about so much more than numbers, the numerical values you have to be mindful of are such a big part. How do you create balance between monitoring your life and living your life?

HEATHER: Honestly, this is something a lot of diabetics struggle with. It is hard to not be consumed in wanting to be perfect with diabetes. Some days, 2+2 does not equal 4 and some days it does. There is so much that affects blood sugars such as daily lifestyle, stress, hormones, physical activity, diet, and so much more. I think one thing that has helped me create a balance between my diabetes and living my life is knowing that things happen and that it is okay to not be perfect. Having diabetes, you have to roll with things and give yourself grace where needed. Learning from your mistakes on the hard days will help you understand how you can do better and will help you appreciate the good days. It is all about balancing a healthy lifestyle and diabetes system that works for you, while also living your normal life and not letting diabetes stop you from doing anything. I love to travel and with traveling, there’s so much more that impacts your blood sugars. Eating new foods, time difference, breaking your normal schedule, elevation change, and so much more. While I travel, I am patient with myself and know there will be bumps in the road, but to always make the most of every minute on that trip.

ALLIÉ: In looking at the numbers, 1.45 million Americans are living with type one diabetes. In fact, 64,000 people are diagnosed each year in the U.S. It seems like there should be a lot being done everywhere for everyone with this disease. But, that isn’t the case. Here enters MI Life In Numbers. Heather, what is the organization you founded working to do?

HEATHER: At MI Life in Numbers, our mission is to support and empower people living with type one diabetes. Our organization has an advocate program for newly diagnosed diabetics and their families to have someone to talk to about this new diagnosis, meet with them monthly, and provide extra support to them as they go through this new transition. This is so impactful for so many families as there is little support for newly diagnosed diabetics in our state. It is nice to have support from someone who knows what it's been like to be in their shoes. We also host a monthly empowerment group for people to talk about the highs and lows of diabetes. Then, we have a monthly event in the community where diabetics can come and meet other people living with diabetes, hangout, do a fun activity together, and hear about each other’s journey with diabetes. We do different events each month like healthy cooking classes, a summer cookout, movie nights, yoga, and new activities for people to participate in. As mental health is a huge part of diabetes, we are paired with licensed therapists to offer counseling services to any person living with type one diabetes. We help cover the costs of the counseling so everyone has access to the resources they need. I also meet with students in our local school systems to provide extra support and resources to them each month as well. Our organization has been working on raising awareness of type one diabetes through community events, social media, November Diabetes Month campaigns, fundraisers, and showing the need for these programs in our community.

“Some

MI LIFE IN NUMBERS

Exclusive Interview with Heather Olson https://awarenow.us/podcast/mi-life-in-numbers TAP/SCAN TO LISTEN

ALLIÉ: For those living with an incurable disease, such as type one diabetes or any other, on the days that seem like they are all too much, what advice do you have?

HEATHER: My advice is to make the most out of your situation. You can’t control the cards you were given, but you can control your outlook on life and that is huge. Having a positive outlook will allow you to see things through a different lens. I took my diagnosis as a gift to help other people like myself and show them that just because you have diabetes does not make you different and to value each moment you are given.

If you only focus on the negative, you will struggle to be happy and the disease will consume your life. You have to take the good with the bad, and take each day and moment as a learning lesson. Also, I would say surround yourself with a good support system and community to support you through your journey. ∎