AwareNow: Issue 57: 'The MS Edition'

AWARENOW

THE WORLD'S OFFICIAL MAGAZINE FOR CAUSES

MCGUIRE

A CAUSE & COMMUNITY WITH HOPE

THE MULTIPLE SCLEROSIS EDITION

ON THE COVER: ALLIÉ MCGUIRE PHOTO BY: BILL MCCULLOUGH

AwareNow Magazine is a monthly publication produced by AwareNow Media™, a storytelling platform dedicated to creating and sustaining positive social change with content that inspires and informs, while raising awareness for causes one story at a time.

STEPS OF STRENGTH

ANGELA BERNARD, ALLIÉ MCGUIRE

THE TIMELESS TRUTH

PAUL ROGERS

AN ODE TO MS ALLIÉ MCGUIRE

BEYOND THE LINES DEMIT OMPHROY

BEYOND DIAGNOSIS

NICOLE PEDRA

CONTROLLING THE FIRE

DR. ROBERT PACE

THE MOVEMENT WITHIN

MINDY EISENBERG

CHRONIC RUMINATIONS

JONATHAN KOHANSKI

WE WILL BE SOMEONE

GABY MONTIEL

BEYOND THE SPOTLIGHT

NICOLE LYNN EVANS

GRIEVING THE LOSS OF MYSELF

ASHLEY ANN HOW

KEVIN HINES

LORI BUTIERRIES

FROM PRE-MED TO LEADERSHIP IN ED DR. SHANNA EGANS, SONJA MONTIEL

STORMS & STRENGTH

KATIE DALE

BECOMING DEBORAH WEED

PLASTIC-FREE FUTURES

AMY & ELLA MEEK, TANITH HARDING

BECOMING HANNAH HANNAH LANIER, GABY MONTIEL

STRONG WOMEN BEAUTIFUL MEN CONSTANTINE ALLEN, CELESTINE RAVEN

Once you choose hope, anything is possible.

Christopher Reeve

“Sometimes the war is within.”

Multiple Sclerosis like many autoimmune diseases is often unseen and unheard outside of yourself. While you silently fight in internal trenches over the course of numerous battles fixed on winning the war within, others are unable to see your invisible struggles. Others aside, find comfort and confidence inside. In your body that’s become a battlefield, you are in complete control, not of the actions of MS but of your own reactions to it. Therein lies your strength and your hope.

ALLIÉ McGUIRE

CEO & Co-Founder of AwareNow Media

Allié McGuire began her career as a performance poet, transitioned into digital storytelling as a wine personality, and later produced the Hollywood Film Festival. Now, as co-founder of AwareNow Media, she uses her platform to elevate voices and champion causes, connecting audiences to stories that inspire change.

JACK McGUIRE

President & Co-Founder of AwareNow Media

Jack McGuire’s career spans the Navy, hospitality, and producing the Hollywood Film Festival. Now, he co-leads AwareNow Media with Allié, focusing on powerful storytelling for worthy causes. His commitment to service fuels AwareNow’s mission to connect and inspire audiences.

The views and opinions expressed in AwareNow are those of the authors and do not necessarily reflect the official Any content provided by our columnists or interviewees is of their opinion and not intended to malign any religion, ethnic group, political group, organization, company, or individual. Stories shared are not intended to vilify anyone or anything. Their intent is to make you think.

* Please note that you may find a spelling or punctuation error here or there, as our Editor-In-Chief has MS and lost vision in her right eye. That said, she still has perfect vision in her left and rocks it as best as she can.

This race has turned into something so much bigger…

ALLIÉ MCGUIRE CO-FOUNDER OF AWARENOW MEDIA & MS AMBASSADOR

FEATURE STORY WITH ALLIÉ MCGUIRE & ANGELA BERNARD

STEPS OF STRENGTH A STORY OF MS, FRIENDSHIP & THE WILL TO KEEP GOING

One moment, Allié was working at her computer. The next, she was struggling to see the screen—not in both eyes, just one. She blinked, rubbed her eyes, tried to refocus. And then, just like that, her vision disappeared completely.

A trip to the emergency room led her to an ophthalmologist, who then sent her right back to the ER. “Your eye is perfect,” they told her. “No issues at all.” Yet, she still couldn’t see. That’s when they gave her a possible diagnosis: multiple sclerosis. Further testing confirmed it—lesions on her brain and spine. A reality she never saw coming.

Movement, something she once took for granted, suddenly felt foreign. Her vision was unreliable, her balance unsteady. Running, something she had once loved, seemed out of reach.

Angie was Allié’s best childhood friend. They went to school together and they ran together. Angie recounts that Allié had always been a runner. A natural. In high school, she shattered records in the 200 and 400 meters, in long jump— her speed was almost supernatural, the kind of talent people stopped to watch. But what people didn’t see was the anxiety. The fear of failure that always lurked in the back of her mind, despite her undeniable success. She ran fast,

Years passed, and running became less about competition for Angie and more about something bigger. One day, she signed up for the Philadelphia Marathon. She trained, pushed through the miles, but something felt missing. Why was she doing this? What was driving her forward?

Then it hit her—Philadelphia. This is where Allié was born, but the city now held a deeper meaning. While Allié faced a challenge she never chose, Angie realized she could choose to run for her. She could run in her honor. Angie had the ability, the strength, and the privilege to move freely. And she wasn’t going to take that for granted.

On her 45th birthday, she picked up the phone. It was Angie. “I’m running the Philadelphia Marathon in November,” she told Allié. “And I want to do it in your honor to raise awareness and funds for MS.”

Allié was stunned. “Why?” she asked. “Why are you doing this?”

And Angie’s answer was simple: “Because I can.”

That call changed everything. Allié hadn’t run in years—not since her diagnosis. She had convinced herself she was done with it. With her loss of vision and her balance being off. Allié thought running wasn’t for her anymore. But if Angie could push herself to run 26.2 miles, what could she do?

Allié signed up for the 8K. It wasn’t a marathon, but it was 5 miles. It was a start.

Training brought back memories of high school, where Allié had always been the fastest one on the track, and Angie had always been in awe of her talent. Back then, Allié was the runner who made it look effortless, while Angie was her emotional support teammate, the one the coach sent to find Allié when her anxiety got the best of her. “Just go do it,” Angie would tell her. “It’ll take 30 seconds, and then it’s over.”

Now, years later, the roles had reversed. Angie was the one going the distance, and Allié was in awe and inspired. “This race has turned into something so much bigger than I expected,” Allié said “I know I’m learning something along the way—about life and about myself.”

For Allié, this race wasn’t about running a certain time. It wasn’t about getting a particular place. It was about proving that she could try. And in that, she had already won. ∎

Learn more about the documentary, ‘Because I Can’. More than a film, it’s a movement… www.becauseicanfilm.com

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

‘RELEASE THE GENIE’ EXCLUSIVE COLUMN BY PAUL

S. ROGERS

THE TIMELESS TRUTH

YOU BECOME WHAT YOU THINK ABOUT

Release the Genie fact: When the Genie plays dodgeball, the balls dodge him.

Earl Nightingale, often regarded as one of the pioneers of personal development and self-improvement, introduced a simple yet profound idea in his famous speech The Strangest Secret. “We become what we think about.” This principle has resonated with millions, shaping the foundation of modern success philosophy. But is this concept truly valid, or is it just another self-help cliche?

What are thoughts? They are mental processes that take place in the mind, encompassing ideas, perceptions, emotions, and reasoning. They can be conscious or subconscious, influenced by past experiences, external stimuli, and internal reflections. Thoughts shape our beliefs, guide our decisions, and affect our emotions, often forming the frame through which we see the world.

Ralph Waldo Emerson in my opinion sums up thoughts the best: “The ancestor of every action is a thought.”

At the core of Nightingale’s philosophy is that our dominant thoughts shape our reality. Whether we think positively or negatively, our thoughts influence our actions, habits, and ultimately our outcomes. This aligns with the principles of cognitive psychology and neuroscience, which suggest that our thought patterns can physically alter brain structure.

Science has shown that neuroplasticity can rewire our brains over time just by using our thoughts. By focusing on positive or goal-oriented thoughts, we strengthen neural pathways that make achieving those goals easier.

I have witnessed this first hand a couple of years ago when my recovery took a nose dive and I lost the ability to walk any distances. We saw a Functional Neurologist who helped me retrain my brain, and by default my body, using a set of exercises over a period of time. Without any drugs or manipulation, I regained the ability to walk again.

The Reticular Activating System (RAS) is a network of neurons in the brainstem which plays a crucial role in filtering information. When we repeatedly think about a goal or idea, our RAS prioritizes and filters related information, helping us notice opportunities that align with our dominant thoughts. This is why someone who decides to buy a red car suddenly sees red cars everywhere.

The Self-Fulfilling Prophecy coined by sociologist Robert K. Merton suggests that our beliefs influence our behavior in ways that make those beliefs come true. If someone strongly believes they will succeed, they are more likely to take actions that lead to success. Conversely, if they constantly fear failure, they might unconsciously sabotage their own efforts.

While Nightingale’s philosophy emphasizes the power of thought, it does not suggest that thinking alone is enough. It is only the first step and must be accompanied by action. This interaction forms the basis of the famous and quite brilliant “Think and Grow Rich” by Napoleon Hill. Each chapter is dedicated to one of 13 principles and distilled down using practicable examples on how we become what we think about. A few examples of those elements are having a consuming desire, imagination and specialised knowledge. Simply imagining success without effort will not lead to tangible results. A dream is just a dream without a plan of action.

AwareNow Podcast

THE TIMELESS TRUTH

Written and Narrated by Paul Rogers https://awarenow.us/podcast/the-timeless-truth

The all important “how to” of becoming the person you wish requires strategies. For example, paying attention to your internal dialogue. Are your thoughts generally optimistic and growth-oriented, or are they filled with doubt and negativity? Keeping a journal can help identify and reshape limiting beliefs.

The mind thrives on direction. Defining specific, measurable goals gives your thoughts a clear focus, making it easier to align your actions accordingly. They are breadcrumbs that lead to greater things.

Many people use visualization techniques to mentally rehearse success. Studies show that athletes who visualize themselves performing well improve their actual performance. When I am coaching my high school rugby teams just before a match I ask them to close their eyes and imagine their role in the game and how they want to perform. It really helps calm the nerves and provides great focus.

The environment we immerse ourselves in influences our thoughts. You consume what you see and hear. Lately, I have found the news channels to be particularly bad and demotivating. Instead, I gravitate towards humor. It is a great way to reset your brain and think without losing the message.

The truth is simple: if you think about success, work toward it, and persist through challenges, success will become inevitable. But if your mind is consumed with doubt and failure, those outcomes will manifest instead. The choice is ours. What we think about today will shape our reality tomorrow. ∎

PAUL S. ROGERS

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

PAUL S. ROGERS is a keynote public speaking coach, 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 corporate leader to kitesurfer to teacher on a first nations reserve to today. Paul’s goal is to inspire others to find their true purpose and passion.

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ALLIÉ MCGUIRE CO-FOUNDER OF AWARENOW MEDIA & MS AMBASSADOR

Photo Credit: Bill McCullough

PERSONAL STORY AND ORIGINAL POEM BY

ALLIÉ MCGUIRE

AN ODE TO MS HOW POETRY HELPS ME PROCESS MS

Poetry has always been a quiet refuge for me—a place where emotion can take shape, where thoughts find rhythm, and where even the heaviest burdens feel a little lighter when transformed into verse.

When I was diagnosed with multiple sclerosis, I struggled to articulate the uncertainty, the fear, and the resilience required to meet each day. Words, however, gave me a way forward. They gave me a voice.

MS is unpredictable. Some days my body listens, moves, and cooperates. Other days, it resists. But no matter what, I write. Poetry allows me to process what my body feels before my mind fully understands it. It’s where I can name my frustration, acknowledge my strength, and reclaim my power.

My poem ‘Because I Can’ was born from this need to reaffirm my own agency. With each line, I remind myself of what

Because I Can

By: Allié McGuire

Some sit still, let life just span, But I choose to move — because I can.

A butterfly’s wings don’t break; they fan, Delicate, yet strong — because I can.

The ink of my story written by hand, It’s bold, it’s mine — because I can.

Each mile I run, though tough to plan, I push ahead — because I can. MS challenges who I am, But I rise above — because I can. The ground may quake beneath where I stand, Yet I stay steady — because I can.

Like rivers that flow to meet the land, I carve my path — because I can. These scars are proof of where I began, But not where I’ll go — because I can.

When wings grow weary, I flex my span, To soar some more — because I can.

So let them see this woman who ran, And keeps on running — because I can.

Photo Credit: Bill McCullough

Each verse is a breath.

ALLIÉ MCGUIRE CO-FOUNDER OF AWARENOW MEDIA & MS AMBASSADOR

Photo Credit: Bill McCullough

“Because I Can is a testament to the human spirit, resilience, and the transformative power of friendship.”

BILL MCCULLOUGH DIRECTOR OF BECAUSE I CAN & AWARENOW MEDIA ADVISOR

BECAUSE I CAN

a collection of snapshots behind the scenes

BEYOND THE LINES

OVERCOMING ADVERSITY FROM ATHLETE TO ARTIST

ALLIÉ: At 17, you were on the cusp of signing with Sporting Lisbon when vision issues led to a diagnosis of optic neuritis, an early indicator of MS. This unexpected health challenge disrupted your promising soccer career. Can you EXCLUSIVE INTERVIEW WITH DEMIT OMPHROY

Demit Omphroy is a testament to the artistry of overcoming adversity. From the soccer field to the canvas, his journey is a vivid portrayal of resilience, reinvention, and self-expression, all while navigating life with multiple sclerosis. Through vibrant art and an inspiring outlook, Demit continues to shape conversations about strength, identity, and creativity.

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“My body felt fine; my legs felt fine. Everything felt fine, but my eye wouldn’t cooperate.”

DEMIT: (continued) When I was in Portugal, I experienced this vision fluttering where I woke up one morning and felt really foggy in my right eye. I thought it was just tiredness. But on the soccer pitch, I realized something was seriously wrong—I couldn’t see out of my eye.

When I saw the doctors in Portugal a day or two later, their initial reaction was, "If this is hereditary, you’re going to go blind." And so it wasn’t initially this feeling of, “Oh, you have optic neuritis; it’s common.” It was more of, “We don’t know what’s wrong with you, and we have to figure out whether or not you’re going to even have your vision anymore.”

That was such a blow for me at the time because I had really decided that I wasn’t going to do school anymore. I was going to be an athlete; I was going to be a pro soccer player. In my mind, being a pro soccer player meant leaving home and going to Europe to actually pursue the dream. That’s the big leagues, you know? That’s where you really make it.

When I had that initial diagnosis of them not knowing what was going on, I was really scared. I felt like everything I had worked for was ending, and I had no control over it. I had to move back home, which was another tough blow. I had set out to live in Portugal, and after a year, I was just starting to get comfortable. Then everything I had planned for was disrupted.

Getting the diagnosis of optic neuritis was maybe a little reassuring because I knew I wasn’t going to go blind, but it also came with the realization that I had this condition. Every time I did any physical exertion and my body temperature rose, my vision would flutter again. It became really foggy, and I couldn’t see clearly.

Moving back home and coping with this was dif ficult because it was always a reminder that I couldn’t run too hard, couldn’t push myself to full exertion, which is required to be a pro athlete. I couldn’t even jog without triggering symptoms. My body felt fine; my legs felt fine. Everything felt fine—but my eye wouldn’t cooperate.

So, going back to how I dealt with this diagnosis and overcame it—it actually took a lot of time to accept what was happening and understand that the path I had in my head wasn’t necessarily the exact way I was going to achieve my dream of being a professional soccer player.

It gave me more motivation to regroup and think about why this was happening and how I could at least keep the dream alive. For me, it became about getting healthy and establishing a regiment. At 18, I didn’t know I had MS yet—I wasn’t diagnosed until I was 21. So at 18, it was this unknown thing I was dealing with. But the diagnosis ended contract talks and any immediate professional career opportunities, which meant that if I wanted to keep my dream alive, I had to go back to college.

In hindsight, that route served me better. It turned out to be a great experience because it allowed me to get an education, learn about myself, and improve as a soccer player. At the time, though, it was tough. I just kept thinking, “I can’t let this diagnosis take away my dream.”

I held onto that mindset through my four years of college. By my senior year, when I turned 21, I got the diagnosis of MS. I remember thinking, “This is the thing that took away that contract when I was 17. There’s no way I’m going to let this define how the rest of my life goes. I’m not going to let this disease take away my dream.”

DEMIT: (continued) I decided I would do whatever it took. Whether it was training until my legs gave out or doing everything possible to compete—I was determined. That meant getting on treatment, managing my stress levels, taking care of my body, and being very regimented. I prepared myself to be in the best possible condition to achieve my goals.

It’s easy to talk about it now, but going through it was really hard. At 16, 17, and again at 21, those were tough moments. I felt like there was this ticking clock on how long I’d be able to enjoy an active lifestyle. MS comes with this narrative that as you get older, you lose mobility and physical ability. That narrative didn’t sit well with me.

I used that as fuel to keep going. I’m so grateful I had that mentality because, despite the dif ficulty, it allowed me to have some of the best years of my life playing professionally. I became the first player in Major League Soccer with MS, which was an interesting and cool accomplishment.

It wasn’t necessarily something I set out to achieve. I just wanted to prove to myself that I could accomplish my dream of being a professional soccer player. I’m really grateful for that.

ALLIÉ: That’s incredible. I didn’t know you were the first—it’s amazing. Now, Let’s fast forward a little now. After stepping away from professional soccer, you ventured into the art world, developing a style often compared to Picasso and Matisse. What inspired this transition? How did your experiences as an athlete influence your artistic expression?

DEMIT: Yeah, the transition to art—it’s been quite a journey. I’ll preface this by saying I tend to go in-depth, so bear with me! When I retired from professional soccer, there was a significant gap before I became a full-time artist. Initially, I spent time behind the camera, working on photography and videography. Being behind the camera became another way for me to express myself.

On the soccer field, I always felt like I was telling a story through my creativity. That storytelling mindset carried over into photography and videography. I worked on creating stories and expressing myself in ways that felt true to me.

Storytelling helped me feel understood, especially as someone living with a disease that isn’t always visible. MS can feel isolating at times because people can’t always see what you’re dealing with—it’s more internal and mental. Photography and videography allowed me to communicate my experiences and connect with others on a deeper level.

Around 2020, I had a realization about what I felt was my true form of expression. Painting had always been a part of my life—my mom was an artist, and my dad was a soccer player, so I’ve always been a mix of both worlds. But up until then, I hadn’t pursued painting seriously.

Stepping into painting full-time was really scary. It felt like a leap of faith. I’d been working as a photographer and videographer, staying connected to sports and the soccer world, but there was always this itch to share my experiences through painting.

During the pandemic, everything turned upside down, and I thought, “If there’s ever a time to pursue what I truly love, it’s now.” I started small—working in a little studio, sketching in a notepad with crayons. I had just gone through a breakup with my girlfriend of nine years, and I was feeling low. Painting became my outlet to process everything I was going through.

At first, it was just for me—therapy through art. But as I kept creating, my friends started noticing. They told me my work was cool and asked if I’d ever thought about selling it. I didn’t believe them at first. The idea of selling my art felt so far-fetched.

DEMIT: (continued) Eventually, I realized that by creating from my heart and focusing on my passion, opportunities started coming my way. Within months, I was collaborating with the Picasso family and working on pieces for major companies.

That leap of faith was one of the toughest decisions I’ve made, but also one of the most rewarding. Whether you’re transitioning careers, running a race, or making a health decision, sometimes you have to follow your heart and trust the process, even when it’s scary.

ALLIÉ: That leap of faith—it’s so true. You can’t just tiptoe into it; you have to be all in. Let’s talk about your art. Your artwork is vibrant and playful, exploring themes of life, death, and family. How has living with MS in fluenced the themes and emotions you convey in your art?

DEMIT: That’s a great question. Honestly, MS hasn’t fully made its way into my artwork yet. For a long time, I kept MS in the back of my mind, almost in denial of it.

But over the past year, I’ve started to understand how critical health is to my creative process. MS has taught me that I can’t burn the candle at both ends and still expect to produce meaningful work. Creating art requires clarity of mind and a level of vulnerability that’s hard to access if I’m not taking care of myself.

Taking care of my health—both physically and mentally—has become essential to my art. I’ve learned that if I don’t prioritize my well-being, I can’t fully express myself or create work I’m proud of.

I’ve also realized that my relationship with MS is evolving. Hearing stories from others who live with MS has been comforting and has reminded me that I’m not alone. This sense of connection inspires me to take care of myself so I can keep creating and sharing my story.

In many ways, managing MS feels similar to being an athlete. As an athlete, you train, eat right, and prepare your body to perform. With MS, I’ve had to develop a similar regiment, focusing on things like treatment, stress management, and healthy habits.

This past year, I made the decision to start drug therapy for MS. It was a proactive step to give myself the best chance at living a long and symptom-free life. I realized that taking care of my health is not just about me—it’s about being there for my family, friends, and the people who believe in my art.

For me, art is about expression—sharing pieces of myself with others. And as I’ve gotten better at taking care of my health, I’ve noticed that my art has become more intentional and meaningful. It’s a process of growth, and I’m learning to appreciate that journey.

ALLIÉ: That’s such an important realization, and it’s clear that health and creativity are deeply intertwined for you. When you share your story about MS, how do you hope it impacts public perceptions of the disease? What message do you want to convey to others facing similar challenges?

DEMIT: I think the main message I want to share is about mentality. It’s not always easy to change your mindset, especially when you’re dealing with something as challenging as MS. But for me, the biggest takeaway has been understanding that there’s more than one way to achieve your goals.

When I was younger, I thought there was only one path to becoming a pro soccer player. When that path didn’t work out, I thought the dream was over. What I didn’t realize was that life had other plans for me, and I could still achieve my dream in a different way.

AwareNow Podcast BEYOND THE LINES

Exclusive Interview with Demit Omphroy https://awarenow.us/podcast/beyond-the-lines

DEMIT: (continued) I’ve spoken to a lot of MS patients—some my age, some twice my age, and some even older. Everyone’s journey is different, but the common thread is that we all have to find our own path forward.

For some, that path might look like completing an 8K, even if it’s just walking to the mailbox or going down the street. It’s about redefining success on your own terms and finding ways to accomplish what matters to you.

The most important thing I’ve learned is that we write the script of our lives. Our circumstances don’t get to decide whether we’re happy or fulfilled—we do.

ALLIÉ: That’s such a powerful message. Thank you for sharing that.

DEMIT: Absolutely. It’s something I wish I could have told my younger self—to keep finding the path, no matter how slow the progress might feel. There’s always a way forward.

I’ve also learned to embrace being a student of life. Even as I get older, I’m constantly learning—about myself, about others, and about the world around me. That curiosity has been such a valuable part of my journey.

For me, it all comes back to self-love and resilience. Learning to love myself and take care of my mind and body has been the foundation for everything—whether it’s my career, my art, or my journey with MS. ∎

TO LISTEN Follow Demit on Instagram: @demit Learn more of his story online: www.demitomphroy.com

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NICOLE PEDRA MODEL, ACTRESS, MS AWARENESS ADVOCATE

Photo Credit: Snaps By Sullivan

EXCLUSIVE INTERVIEW WITH NICOLE PEDRA

BEYOND DIAGNOSIS

SURVIVING AND THRIVING WITH MULTIPLE SCLEROSIS

Nicole Pedra defies the limitations of multiple sclerosis (MS) while embracing an array of roles, from coach to model and actress. Despite her diagnosis at the tender age of 10, Nicole navigates the challenges of her condition with resilience and grace, offering insights into how she continues to pursue her passions in the entertainment industry. Through her experiences living with MS for 26 years, Nicole's journey unfolds as a testament to strength, resilience, and the unwavering determination to thrive despite the obstacles presented by chronic illness.

ALLIÉ: Let's start our conversation by talking about hats. As someone who wears multiple hats, a coach in addition to being a model and actress, how do you navigate the challenges of MS while pursuing your passions in the entertainment industry?

NICOLE: Basically, the industry is so up and down all the time. They say that if you're an actor, you're also asked, "Which restaurant do you bartend or waitress at?" So I've been in the acting role for a while now. When I audition, that's fine, or when I get something, but it's not always consistent, which can be overwhelming. If it were more regular

Photo Courtesy: Nicole Pedra

NICOLE PEDRA MODEL, ACTRESS, MS AWARENESS ADVOCATE

“When you have something to do, somehow magically, you summon up the energy to do it.”

NICOLE: (continued) do other things, and go where opportunities take me. So the real way I manage all my obligations and wearing so many hats is by being aware of what the next day entails. If I have a shoot that's going to be a six-hour day, I prepare myself accordingly. That might mean sleeping well, maybe skipping a workout if the shoot will be strenuous, like if it's on rocks or involves being in a bathing suit. I make sure I've taken my medication, gotten plenty of sleep, and I show up as my best self.

ALLIÉ: Yeah, I hear you. So it's all about preparation, right? Being proactive rather than reactive, I suppose.

NICOLE: Exactly. The amazing thing is, I'm sure everyone can relate to when you have something to do, somehow magically, you summon up the energy to do it. You just get it done. People get very surprised because I am high energy. When I'm doing something, I'm fully present, positive, and energetic. You wouldn't assume that because I have a chronic illness, but I can bring that to everything. Then I have to recharge later.

ALLIÉ: It's 'spoon allocation', right?

NICOLE: Exactly. Even when you're depleted, if you have something to do, somehow you're able to muster that extra energy to get through it. But no one sees afterwards when you're like, "I'm going to be dead in my bed for four days." Maybe just doing a little work on my computer. I manage it that way. When I'm really tired and not going to get the work done that I want to, that's when I spend time on emails, talking to my partnerships, and addressing everything that needs attention.

ALLIÉ: Multiple sclerosis can manifest at any age, but let's delve into this. It's most commonly diagnosed between the ages of 20 and 40. However, Nicole, you received your MS diagnosis at the age of 10. So, my question is, diagnosed at such a young age, could you take us back to that time? What was the most challenging aspect as a child?

NICOLE: The interesting thing I often discuss is that most people have had symptoms before diagnosis. They experience these strange symptoms for a while. For me, it was a significant onset. Basically, I got the flu during spring break, and it was severe, with constant vomiting. They had me on frozen Pedialyte popsicles to nourish my body. However, after a few days, it progressed into strange neurological issues. I kept returning to the pediatrician, and suddenly I experienced double vision, making it difficult to watch TV. Then I couldn't feed myself, followed by difficulty walking due to what I called a "jelly leg”, where it lacked control. The pediatrician realized this was beyond a normal flu and sent me to the hospital. Initially, they suspected a stroke or brain tumor because I also had Bell's palsy, causing numbness on one side of my face. Additionally, I experienced transverse paralysis, rendering the right side of my body and leg paralyzed. It was evident that something serious was happening. I responded well to steroids, allowing me to regain mobility and vision. However, I relapsed after two months, leading to hospitalization again. These severe flare-ups facilitated a quicker diagnosis. It's intriguing how different my disease's onset was compared to others.

ALLIÉ: To your point, typically, symptoms appear gradually, and it's only after diagnosis that you connect the dots. Each journey comprises a series of moments. I wonder if you could share a speci fic moment in your MS journey that altered your perspective on life and ultimately shaped who you are today. Was there such a moment?

MODEL, ACTRESS, MS AWARENESS ADVOCATE

Photo Credit: Alex Ancheta

NICOLE PEDRA

NICOLE: Yes, it was my lowest point. I refused to accept my diagnosis and didn't acknowledge any issues I faced. This led me to become controlling and almost manipulative, navigating situations to fit my narrative. Then someone made a remark that hit home, and I read a book that resonated deeply. It dawned on me that I was living in denial, pretending not to be sick, concealing a significant part of myself. I realized my true strength lay in accepting my MS as part of me. Hiding it was dishonest and prevented me from being my authentic self. During COVID, witnessing the Black Lives Matter movement and the need for representation, I realized the importance of visibility. As a child with MS, I lacked role models. But as an adult, I could be that role model for others. It wasn't a sudden realization, but as I matured, I embraced my condition not as a defining factor but as a source of strength.

ALLIÉ: Isn't it remarkable when you find strength within what others perceive as weakness? People often say their disability is their superpower. Until you walk that path, it's challenging to grasp.

NICOLE: Until you decide to embrace it, you don't realize its power. You possess that superpower, but if you’re not embracing it, you’re not being the superhero you are.

ALLIÉ: It's like stepping around your power instead of into it. When you step into it, your rock it like you're doing now. Your work, stories, and presence support many in the community.

NICOLE: You know, the crazy thing is, as much as I'm giving support to people, this has been the most rewarding thing for me. Like, like I said, I never knew anybody. I've never talked to people about my illness. Like I never, you know, I didn't talk to my friends' moms who had MS. Like I was in high school and elementary school. I wasn't going to be like, "Hey, are you dealing with this?” They weren't my peers, right? So, having people relate to me has been like overwhelming for me. As much as I know it's helping other people, it's been so amazing on my end.

ALLIÉ: Let's get to brass tacks here. With MS, just like with life, there are good days and bad days. In your 26 years of living with MS, let's talk about the bad days. How do you maintain? I guess I asked this question speci fically for those who have been newly diagnosed, who don't have the experience that you have. What advice do you have for managing the bad days?

NICOLE: Embrace the bad days. We just have to accept that we're gonna have bad days. I had a bad day yesterday, and bad days this week. And if we stay in a space where we're like, "Why am I having this bad day? I can't be having this, you're not doing anything…” Then we're just making it worse, right? We have to be like, "Okay, this is my bad day. I'm having a bad day. Let me accept it. If I need to rest, let me rest. If I feel guilty, I'm not getting stuff done," answer one email, do it while resting. Like, as long as you don't let your bad day ruin your spirit and your entire mentality, that's what's important, right? Accept that it's a bad day. Take the rest that you need. Don't feel bad. You are going to have bad days. Period. You can't avoid them. They're going to happen. So when you have a bad day, you're having a bad day, that's okay. Do what you need to so you don't have a bad day tomorrow. You know what, I still struggle. My husband's always like, "It's okay." Like yesterday, I was really depleted because I did a lot of way too much stuff consecutively. I had like three very jam-packed days. And he was just like, "Just take a rest day. Put on a movie, answer some emails, you know, just rest. It's okay." And I know it's hard to accept that when you first been diagnosed because you're used to doing so much. You're like, "I did this, why can't I do this?" And then you guilt yourself about it. But the reality is the sooner you can accept that this is how it's going to be and that you will have these bad days, the less they'll affect your life.

ALLIÉ: So, it's an internal struggle where you just have to manage expectations. And it's crazy, because it's so easy to give other people grace, but to give ourselves grace… that's a whole different story. It’s much more difficult.

NICOLE: I tell people to think about how you would talk to a friend. Seriously, think about what you would say to a friend. And also, having a tool… a toolkit, What can you get done on bad days, right? It’s knowing these are the things that I can do on bad days that will make me feel better if I actually do something. Maybe on bad days you do laundry. Right? It's like, “Oh, okay, at least I'm getting laundry done.” It’s just having things that you can do that will make you feel better within your limits.

ALLIÉ: That’s such great advice. Schedule your wins for the bad days. These are the wins that I can gain, right?

Photo Courtesy: Nicole Pedra

NICOLE PEDRA MODEL, ACTRESS, MS AWARENESS ADVOCATE

BEYOND DIAGNOSIS

Exclusive Interview with Nicole Pedra https://awarenow.us/podcast/beyond-diagnosis

NICOLE: Because you still feel good when you accomplish one thing, right? So, what can I do that's going to make me feel better when I can do absolutely nothing?

ALLIÉ: I want to talk about a few more letters today because in addition to MS, you balance additional diagnoses. We're talking ADHD and PTSD. At this intersection, how do you maintain self-care while also managing life with your busy schedule?

NICOLE: It's like, is there really an answer to this? So I actually, I get very overstimulated and overwhelmed. So a lot of times I take 30-minute breaks. So I like to go into like a room by myself, maybe put my noise-canceling headphones on and read. I'll do that in the morning. Like just finding ways to ease into things more easily and learn, know yourself, right? Like I have ADHD and like my brain can be in a million places at once. My noise-canceling headphones actually really help with that, right? Sometimes when I'm learning lines, I do it standing up while pacing because my body's anxious. There's just certain tools that I've learned to incorporate, to manage all these different things. The PTSD, that's therapy helps. But I have a lot of issues sleeping because when I first, my onset of my disease which was obviously very frightening, my parents were out of the country. So I was in the hospital for the first time when my parents weren't there. So it was very scary. And afterwards I also had a spinal tap that went very badly in the emergency room. They didn't have any positioned correctly. So they had the needle in and they couldn't get any of the fluid out. And so like my mom was on top of me screaming, I was screaming, she had to lay on me physically because I was screaming so bad. And a doctor came in and was like, put a pillow between her legs, put a pillow between her legs. That was all very traumatizing. And I would wake up screaming at night because I would be scared that my parents weren't gonna be there, and I'd be sick. So sleeping has always been an issue for me. Once again, just calming down, reading at night, putting the phone away, things like that. Like understanding that my phone can make me anxious. So if I'm feeling anxious, let's not have the phone. In regardsto self-care, everyone's different. Some really like breathing techniques, but that doesn't necessarily work for me. Some people do better in sunlight. I like to lock myself in a dark room. Being in a space that's enclosed makes me feel like I have more control…. It’s hard with a disease that you don't have any control of.

ALLIÉ: For sure. Well, I love how you're saying it's just knowing yourself. And once you know yourself, you can then get to know the tools that work best for you.

NICOLE: And a lot of times people spend so much time fighting stuff instead of being aware of stuff. Let’s say we're looking in the mirror and you're just like thinking that like, oh my God, this shirt looks so gross and stuff. Being aware that you just had that thought, right? Be like, no, this shirt doesn't look gross. Maybe it's not the right color. Let me try something else. Like being aware of what we're thinking is like the first step because then you can like actually tell the truth of what it is. Right? Like if you're not aware of the fact that you're calling yourself lazy and your guilt-tripping yourself, then how are you going to fight that? ∎

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Photo Credit: Scott Sapp

‘MS-ABILITIES’ EXCLUSIVE COLUMN BY FOX

RIGNEY

THE SPOON THEORY ONE STRIDE, ONE SPOON, TWO STRIDES, TWO SPOONS

Stride one, stride two, stride three, toe stub, legs wobble, arms spin, feet planted, and recovered. Time to catch up. Stride one, stride two, stride three, legs of molasses, gravity winning against my upright poster, maximum effort to raise my knees, and I stop.

Watching first-time runners outpace me was unbelievable. Stride for stride, matching their jog was beyond my capability. Why!? The running skills I developed over a decade should easily match pace with new runners.

That was the first day my spoons were notably depleted in the moment. I hadn’t yet been diagnosed with Multiple Sclerosis or exposed to spoon theory. Months later, while reading a magazine article, much like this one, I was introduced to Spoon Theory. That article taught me more than a concept, but a shared language and terminology commonly used between groups struggling with a consistent de ficit of energy, like me. This article aims to inform those unaware of “Spoon Theory” about its concept and origin.

What are Spoons?

Spoons are a metaphor describing the finite energy we have to navigate our day. Each morning, we wake up with a certain number of spoons, and every activity, no matter how small, depletes our spoons. Activities could include:

Physical tasks: showering, dressing, exercising

Mental tasks: making decisions, concentrating, studying

Emotional tasks: having difficult conversations, dealing with stress or anxiety

Why Spoons?

The term “spoon theory” was coined by Christine Miserandino, who lives with lupus. In a conversation with her friend, she used spoons on a table to illustrate how her chronic illness affected her energy levels. This simple, tangible analogy resonates with many people facing similar challenges.

Chronic illnesses, disabilities, and mental health conditions can signi ficantly reduce the number of spoons we have. It’s like starting the day with a smaller set of silverware than someone living without a chronic illness. Furthermore, tasks that might cost those absent of a chronic illness one spoon could cost someone with a chronic illness many spoons.

When We Say, “I’m Out of Spoons…”

This phrase signifies we have reached our limit. We have used up our available energy for the moment or day and can no longer function at our usual capacity. It’s a way to communicate our needs and boundaries without explaining the complexities of our condition.

AwareNow Podcast

Written and Narrated by Fox Rigney https://awarenow.us/podcast/the-spoon-theory

Spoon Theory as a Tool for Understanding

Spoon theory is a powerful tool for fostering empathy and understanding. It provides a simple, yet effective way to explain the impact of invisible illnesses and disabilities. It can also help those of us with chronic conditions communicate our needs and set boundaries with friends, family, and coworkers. Please remember:

Everyone has a different number of spoons. Some days we have more spoons than others. It’s okay to say “no” when we’re out of spoons. Respecting our spoon levels and limitations is critical.

Years of trial and error passed before I had a commanding grasp of how many spoons I have and how to use them. It’s important to respect and give grace for each spoon we use at events, activities, and situations. Thoughtful consideration makes participating in the world a deeper, richer, and more ful filling experience.

A phenomenal spoon necklace can be purchased, at the below link, to show our shared spoon endeavors and support AwareNow Magazine & Podcasts, in their beautiful efforts to raise awareness for causes one story at a time:

The Spoon Life Necklace www.thespoonlife.org

One stride, two strides, done. ∎

Disability Advocate, Author & Corporate Healthcare Professional www.awarenessties.us/fox-rigney

FOX RIGNEY is a leader in the Michigan Multiple Sclerosis (MS) and disability community. He holds positions as Committee Chairperson of a MS Community Engagement Committee, board chair of Corewell Health’s disability focused resource group, member of a MS Government Relatiions Action committee, and leader of a

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ELIZABETH MATEER SISTER, MOTHER, GRANDMOTHER & MS WARRIOR

EXCLUSIVE INTERVIEW WITH ELIZABETH MATEER

BEHIND THAT SMILE LIVING (NOT DYING) WITH MS

The most beautiful smile I’ve had the pleasure and honor to see belongs to my sister, Elizabeth Marie Mateer. Whether in tears of immense joy or intense sorrow, she wears a smile and wears it well. Diagnosed with Multiple Sclerosis over 20 years ago, MS has knocked her down on many occasions, but every time she gets back up with a smile in response to the pain. Having been diagnosed with MS just over a year ago myself, I can think of no greater source of inspiration for a condition that can’t yet be cured, only endured. Her smile makes me smile.

ALLIÉ: You’ve known me all your life, and I’ve known you since I was 3. As your older sister, you had to look up to me, as I was taller, but I’ve always looked up to you because your smile was wider. I’m not sure if you are aware of the impact your signature smile has, but perhaps by the end of this conversation, you’ll know. For now, getting back to ‘years of knowing each other’, it’s not a person but rather a diagnosis that you’ve known for over 20 years now. Take us back to the beginning. Liza, can you share the story of when you were first diagnosed?

ELIZABETH: From what I can remember, because it was kind of vague, I didn’t know what to think, because I didn’t

“My brain has so many lesions on it… I’ve had to be creative to get from here to there. Sometimes backwards. Sometimes forwards.”

ELIZABETH: (continued) sight… It didn’t really hit me until a little further down the road. I didn’t really accept what it was because I didn’t know what it was going to do… It has affected my life in more ways than one. People always said to pray and ask God to take it away, but I did not do that even once. God doesn’t put anything on us that we cannot bare. So, I just asked him to give me the strength to deal with it. It was hard sometimes, but it gets easier… Not really. That was a joke… It doesn’t get easier. I used to say, “It is what it is.” But it is not… It’s what we make it. It’s really not bad, if you learn to have fun with it. Learn that the pain does not go away; if anything, it gets worse… but you just have to have fun with it, in one way or another. You can’t let it take you.

ALLIÉ: You grew up with your nickname, Liza, but as an adult you go by your real name, Elizabeth. I will always call you Liza, just like you’ll always call me Alisha, my real name. Beyond your name and beyond your diagnosis, you have a spirit and a strength that can’t be defined or diminished by either. Where does it come from? I’ve seen you knocked down so many times, and each time you come back stronger. Where do you get your strength?

ELIZABETH: God… I had to lose everything to actually appreciate what I had. MS has been dif ficult, but by God’s grace and mercy, I am able to see the benefits of it. I was going way too fast through life… I had to slow down. I am that strong and stubborn that I had to have my legs taken from me. I had to be paralyzed, in order to sit my behind down. I had to lose my sight, in order to slow down. My speech… I have to really think 5 times before I speak, like I’m supposed to. I’m forced to do things that I should be doing. God is the only thing that has given me the strength. A lot of this experience I’ve had to experience by myself… but I’ve never been really alone.

ALLIÉ: In all things, there is something to lose and something to gain. When it comes to MS, what’s been your hardest loss? What’s been your greatest gain?

ELIZABETH: My relationship with God has been the greatest gain, because that has been my saving grace. The most difficult thing has been my relationships — or lack thereof. It’s hard to give something that you don’t have. I mean I can go without my legs… but not being able to provide for my son in the way I’d like to… even my granddaughter now… There are things I’d like to do, but it’s okay. I’ve learned that I can do it. I’m going to do it. I’m going to get from point A to point B. I just have to take a different path… My brain has so many lesions on it… So, I’ve had to be creative to get from here to there. Sometimes backwards. Sometimes forwards.

ALLIÉ: I remember when I video called you one day a year or so ago to tell you about an article on MS that we had just published in our magazine. I remember telling you that I would send you a link so that you could read it. I remember you crying. When I asked why, you told me that you couldn’t read it. You were having a flare up with your MS. Optic Neuritis is a bitch. You couldn’t read it. I remember you smiling while crying and saying that it would be okay. I remember being inspired. Do you know that it was your smile through those tears that inspired the AwareNow Podcast? If our stories couldn’t be read, we would make them heard. You inspired more accessibility and more inclusivity.

ELIZABETH: First of all, it’s not ‘my’ MS. I will not claim it as mine. It’s a disease that lives inside me, but it is not mine… You know, I don’t think I’ve been able to go through what I’ve gone through for nothing. God has allowed me to have something and get through something for a reason. I haven’t figured out that reason yet, but I think I am

AwareNow Podcast BEHIND THE SMILE

Exclusive Interview with Elizabeth Mateer https://awarenow.us/podcast/behind-the-smile

“Life is for living…”

ELIZABETH: (continued) supposed to share my experiences and what I’ve done to get through this to help others who may be dealing with the same thing. I did read this book called ‘The Wahls Protocol’, and the first couple things I read from it was people sharing their stories. I thought, “Oh my gosh! They’re going through the same thing I’m going through.” With MS it’s so difficult talking to someone who has never felt even a part of it. There are no words to describe it. Can you put my feelings into words? To this day, I cannot. Hopefully this interview will reach people because… there’s a lot of pain. There really is, but there is greatness in everything. We just need to find it.

ALLIÉ: I want to go back to the topic of strength. Not only are you spiritually strong; you are physically strong as well. It seems like one day you are in the hospital, and the next day you’re back at the gym. An uphill fight, battling chronic fatigue and physical weakness from MS, even when requiring your walker, you hit the gym. What is your motivation?

ELIZABETH: Life. Life is for living. I don’t want to just exist… I want to live. I love to workout, and I am not going to let some illness keep me from working out. I was in the military… PT? Oh, not a problem. That was before I was diagnosed, but still. At that time, the MS was still inside me, but I’m stronger than that. I enjoy it.

Do what you love. Do what makes you feel good. There are too many things that make you feel bad. I get rid of a lot of stress by working out. To me, it feels good, emotionally and physically. With MS, you have to be strong. A body in motion stays in motion.

ALLIÉ: “What a beautiful girl. What a beautiful smile.” More people that I can count have referenced you this way over the years. Complete strangers, I’m sure, find hope in that smile of yours. If there were words of hope that you could offer, not only to those with MS but to anyone feeling hopeless, what would those words be?

ELIZABETH: Remember who you are and what you want to be. Don’t let anybody or yourself bring you down. You just have to think positive. Mind over matter… Smile. ∎

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More than anything, I want patients to know that they have control.

ROBERT PACE, MD NEUROLOGIST AND DIRECTOR OF NEUROIMMUNOLOGY, MEMORIAL HEALTHCARE INSTITUTE FOR NEUROSCIENCE

‘KEEPING PACE WITH MS’ EXCLUSIVE COLUMN BY DR. ROBERT

PACE

CONTROLLING THE FIRE WHEN IT COMES TO MS, IT’S ALL ABOUT FIRE PREVENTION

“Meet Dr. Robert Pace. He is a neuroscientist and a translator. That’s right. He can translate MS to those of us who understand it least but yearn to ‘get it’ most. Metaphorical in explanation, you’ll understand why I now relate to the song ‘Girl On Fire’ by Alicia Keys so much.” - Allié McGuire

There are many things I try to do when I meet a patient newly diagnosed with Multiple Sclerosis, but really only one that I have to do.

I’ve seen hundreds of patients in this situation, and, although the outward manifestations vary from person to person, the underlying emotion is always the same: fear. This is absolutely understandable. All chronic conditions bring fear, the magnitude of which is usually proportional to how unpredictable that condition is. There are few medical conditions that are as unpredictable as Multiple Sclerosis. One MS patient may live her entire life with few (if any) problems. Another may accumulate dramatic disability over a short period of time. And everything in between. In medical school, if you didn’t know the answer to an exam question, you had a reasonable chance by guessing “Multiple Sclerosis”. No matter who the patient nor what the symptom, MS can cause it. Newly diagnosed patients learn this in marathon Google sessions days before we ever meet. By then, most are armed with an array of facts about MS: its caused by the immune system, it affects young people, it can be “relapsing” or “progressive”, it damages “myelin”. The problem is that, all though full of facts, search engines don’t always convey the truth. And facts out of context compound fear. So, this is the one thing I have to do. I have to help chip away at the fear. Fortunately, just like any other monster in a corner, shining light on a disease makes it much less frightening. So what is Multiple Sclerosis?

Doctors (especially neurologists) love to use big, complicated terms to describe things in order to make us seem smarter than we really are. So, if I followed the protocol, I’d say that Multiple Sclerosis is a chronic autoimmune condition of the central nervous system characterized by recurrent in flammatory demyelinating events separated in space and time. While this would be an accurate statement, it wouldn’t really help someone understand what they’re dealing with.

Instead, I prefer to explain MS the way I actually think about it.

Imagine that your brain and spine were a giant building where all of the decisions in your body were made. Inside there were millions of offices that dealt with different things; one might be in charge of extending your left thumb. Another may be in charge of sensing cold on your right foot. In another office, the color blue is recognized, and so on. In this case, Multiple Sclerosis would start off like fires. A fire starts in a particular office and causes damage. That might lead to a symptom (like difficulty extending your left thumb, or inability to feel cold on your right foot, or not seeing the color blue, etc.). BUT, it also might not. And, in fact, it usually doesn’t lead to any symptom. Why? Because the brain is really, really good at getting all of these jobs done. If there’s a fire in the office that moves your thumb, that job gets moved into another office. This happens so quickly that you never notice the job wasn’t being done. Easy.

However, not all of these offices are the same. Some offices do jobs that can’t be easily moved. If a fire happens in one of these locations, a symptom arises. Over time, you may be able to rearrange the jobs such that the symptom remits. But you may be left with a symptom that doesn’t resolve completely, or at all. So, one of the most important factors that determines how many symptoms someone with MS does or doesn’t have is luck. Some fires just hit the wrong offices.

Not all the variability is due to chance, however. Possibly the biggest factor in disease severity is the frequency that the fires occur. One person may have a fire, on average, once every 10-15 years. That’s pretty infrequent, but fires still happen multiple times over the course of her life, and she therefore has Multiple Sclerosis. Another person may have fires every 10-15 weeks. For him, hitting these critical offices is almost inevitable, and symptoms will accumulate much faster.

These “fires” (which are started by the immune system) are what we are referring to when we say “relapse”. So, a patient with Relapsing-Remitting Multiple Sclerosis (RRMS) is not always affected by symptoms (remember, most relapses happen without the persons awareness). New symptoms, however, can crop up at any time. Moreover, old symptoms that have previously resolved can come back when the body is under stress from something else. We may see this happen years after the original fire that caused them. In these situations, it’s not because a new fire is going on. Rather, the brain cannot continue to compensate for previous damage when its under stress. This is something we call recrudescence (again because of the trying-to-seem-smart thing).

There’s another layer on top of all of this. Imagine that building having fire after fire, year after year. Over time, a couple of problems start to crop up. One is that, eventually, you can run out of spare offices. The brain is incredibly adaptable, but it can only take so much damage before it can’t keep up with all of its demands. The other is that, after years and years of fires (along with any other damage that has accumulated over one’s life), eventually the structure of the building can become unsound. Then, the building can start to collapse in on itself, and symptoms can start to continuously accumulate. That is a very different problem, and hitting that with a fire-hose isn’t going to help.

When this occurs, that person now has what we call Progressive MS. (Because neurologists love to needlessly complicate things, we sometimes refer to “Primary Progressive” and “Secondary Progressive”. If your neurologist insists on using these terms, just yell “shut up, nerd!” or something to that effect and we’ll usually pipe down.)

What can we do about all this?

Science has known about multiple sclerosis since the 1800s. We figured out that MS had something to do with the immune system as early as the 1940s. But up until the 1990s, there was really nothing that we could do about it. Before this, we simply hoped that the fires would be relatively infrequent and would miss critical spaces. We could give steroids (i.e. the neurologist’s go-to treatment when we have no idea what to do) while a fire was happening to help it to go out faster. But there was nothing we could do to prevent fires. Then, in 1993, the first treatment became available that was able to reduce the number of fires that a patient would have. This was a big deal; so much so that the medication’s initial offering was done via lottery. This was when we started to play some defense against MS.

Since then however, more treatments have become available, and within a couple of decades we’ve shifted from playing defense to playing offense. We now have over 20 different disease-modifying agents treatments (DMTs) that can alter the course of someone’s MS. Although these treatments approach the problem in very different ways, they all have one primary job: stop new fires. They are all fire suppression. Our hope with treatment is that, from the time it’s started, that there will be no more fires.

“MS a complex condition, and as such requires a complex approach to management.”

Management goes far beyond just drugs, however. MS a complex condition, and as such requires a complex approach to management. Diet, exercise, sleep, symptom and stress management are integral to a successful treatment approach. More than anything, I want patients to know that they have control. I don’t want them to have to live in fear of what the next fire will bring. Of course, nothing is within our complete control, but that doesn’t mean that we shouldn’t try. ∎

ROBERT PACE, MD

Neurologist & Director of Neuroimmunology, Memorial Healthcare Institute for Neuroscience www.memorialhealthcare.org/provider/pace

Dr. Pace cares for and has expertise in a variety of neurologic conditions. He is passionate about demyelinating conditions of the central nervous system and holds a fellowship from the University of Michigan in Clinical Neuroimmunology and Multiple Sclerosis. He has experience using a variety of immunomodulating and suppressing agents and also lectures nationally regarding treatment options for MS.

MINDY EISENBERG FOUNDER OF YOGA MOVES MS

Photo Courtesy: Mindy Eisenberg

EXCLUSIVE INTERVIEW WITH MINDY EISENBERG

THE MOVEMENT WITHIN

HELPING PEOPLE WITH MS MOVE BEYOND LIMITATIONS

For years, Mindy Eisenberg has been helping individuals with MS and neuromuscular conditions rediscover movement, resilience, and connection through adaptive yoga. As the founder of Yoga Moves MS, she has built more than just a nonprofit—she has cultivated a mighty community where strength is measured not by what the body can't do, but by the possibilities that remain. With a background bridging healthcare and holistic healing, Mindy’s work is redefining what it means to move, adapt, and thrive.

ALLIÉ: Yoga is often described as a practice that extends far beyond the mat. You’ve spent years working with individuals facing mobility challenges—many of whom have felt disconnected from their own bodies due to MS. Can you share a moment when you witnessed yoga reconnect someone not just physically, but emotionally or spiritually, in a way that changed them—and maybe even changed you?

MINDY: There are so many choices when you pose a question like that. One that’s fairly recent involves a student who has been with us for about nine months. They’ve noticed a dramatic change. They had resigned themselves to

MINDY: (continued) their participation in our community—what we call a class, though it’s bigger than that since we view all our classes as one big community, whether online or in person—you can see the change in their motivation and attitude. And then the body follows that change. It’s been pretty dramatic.

There is so much to this mind-body connection. The attitude changed, the belief shifted, and I think the magnitude of hope just spiraled. One day, I turned around while teaching and thought, Well, he didn’t do that before. It was one of those miracles you witness.

I’ve been doing this for two decades, and yet miracles still happen. You have to keep your eyes open and your awareness sharp, but they’re there—you just have to catch them. And sometimes, the change is even more dramatic, and everybody reacts with a Wow, wait! That moment magnifies everything because people start acting like cheerleaders, clapping, and you can feel the happiness and joy from others who are genuinely happy for that person. That’s what keeps me going.

ALLIÉ: For many with MS, movement can feel like an uphill battle against a body that no longer responds the way it once did. How do you help shift the mindset from frustration to empowerment—helping people see that adaptability is not about giving in, but about reclaiming control in a new way?

MINDY: Yeah, I mean, we provide an environment where you’re truly accepted as you are. A student might come in feeling great, or they might be in a sad mood, an angry mood, or just not feeling so great. Another might come in gleeful and happy, or silly and goofy. One might be a comedian, another might be sarcastic. It all gets mixed into the same pot, and that—right there—promotes adaptability. Everyone being different fosters that ability to adjust.

We embrace and get excited about the small things, but we don’t accept judgment. If you judge, you’re called out on it. We have certain policies that might seem silly at first—like you’re not allowed to say my bad leg or my good leg— because we believe the body responds to the way we talk about it. That mindset impacts the group as well.

So, while we promote positivity, we also acknowledge the challenge. It’s about accepting the full range of experiences —not making light of the seriousness of it, but also celebrating what may seem small but is actually significant.

MINDY EISENBERG FOUNDER OF YOGA MOVES MS

“When designing a class, we look at not just the physical aspect but also the social and emotional layers.”

MINDY: (continued) That’s what we’re trying to do. For example, I think physical therapy is a highly complementary modality to yoga therapy. Say someone goes in with a shoulder injury—the yoga therapist will examine the whole body, while a physical therapist, for the most part (though I don’t want to completely generalize), will focus primarily on the injured shoulder or the area that underwent surgery.

When we consider all these layers, people tend to feel more whole. When designing a class, we look at not just the physical aspect but also the social and emotional layers. And from there, it expands outward to connection with others.

ALLIÉ: Right. Well, so having heard what you just shared, which is so spot on, I would like to propose that we change the spelling of ‘holistic’ to ‘wholistic’, regarding seeing and treating the whole person, not just a part of the person.

MINDY: Yes—treat this like it’s a person, not a condition.

The other big philosophical difference is that we empower people to help themselves. If you go to the doctor, they’re likely to give you a pill or a procedure, and you’re there in a very passive role. But when you come to our community, we hope you’ll take on a more active role at some point. You might not right away—sometimes people come in questioning what this is all about—but hopefully, within a very short period of time, members start to feel empowered to help themselves. And that is so important because it opens up their minds, their hearts, and their possibilities.

ALLIÉ: As you're sharing that, I'm thinking there's space for all things, right? When it comes to patient care, it doesn't have to be this or that. It can be both, right?

MINDY: You're just finding that balance. I'm not against going to a doctor when I have a condition that requires that. I’m not going to get better by meditating. You need that care. I believe they can be side by side. They complement each other. You need both.

ALLIÉ: Agreed. One more question for you, Mindy… You’ve dedicated your life to this work, but personal dedication often comes from personal experiences. What has this journey—of founding Yoga Moves MS, guiding so many through their healing, and being a witness to both struggle and triumph—taught you about your own resilience, and what keeps you moving forward even on the hardest days?

MINDY: So, when I entered the Yoga Moves MS community, there wasn’t a plan—at least, not one I was aware of. I think there was a divine plan, but I didn’t see it at the time. As I started meeting more and more people impacted by MS and other chronic conditions, I realized something deeper.

I had grown up as a little girl with a very sick mother who had primary progressive MS. The environment I was raised in wasn’t what you would call healthy. There was a lot going on that was far from optimal for children—or for parents. There was anger, sadness, and pain, and no clear way out. Eventually, my parents divorced, and I saw firsthand how my brother and I were impacted.

AwareNow Podcast

Exclusive Interview with Mindy Eisenberg https://awarenow.us/podcast/the-movement-within

MINDY: (continued) Somewhere within me, I believe I have an inner strength that I don’t even know the source of. It’s bigger than me, and I also feel that my community is bigger than me. What was incredibly powerful for me was witnessing the relationships between students and their care partners—their spouses, their partners, their families. Seeing these strong, loving bonds, I realized that truly beautiful, functioning families exist. And that realization was healing for me.

At first, I didn’t fully grasp how much I was benefiting from this community. Then, I started meeting volunteers who work with us—people whose nature is to give, who feel better when they give. Yoga Moves MS provides them with a space where they can do that. And then there are the teachers—dedicated individuals who give so much of their time. Yes, they’re paid, but not nearly what they are worth, which is platinum gold. Yet, they say, This is where I need to be.

Through all these layers—teachers, volunteers, and students—I’ve learned the beauty and the profound impact of giving. And I’ve realized that this realm of beauty does exist.

I mean, to see a student—someone similar to my mom—whose physical body is doing less and less in terms of movement, and yet they still acknowledge that today is Valentine’s Day, or that the sun is shining, or that any given day is worth celebrating… That is profound.

To receive a message from a student who I know is in pain—yet they take the time to send me a message saying, Have a beautiful day or Spread love—that humbles me. And I think, Wow.

I can’t possibly understand what it’s like to be in their body, in their situation, day in and day out. And yet, they rise above it. Or maybe they’re not even rising above—maybe they’re just being with it. They amaze me every day. ∎

Behind the smiling and laughing there’s a silent struggle…

JONATHAN KOHANSKI

OPEN WATER SWIMMER, PHOTOGRAPHER & MS WARRIOR

PERSONAL STORY BY JONATHAN KOHANSKI

CHRONIC RUMINATIONS A STORY OF THE SILENT STRUGGLE

I had gone out one night over the fall with someone (I’ll call her Paula since I don’t know a Paula) and was meeting her for the first time. Maybe it was pride, stubbornness, or an insane belief that even after 17 years with MS, that I was just like everybody else. Whatever the case may be, I wanted to look and feel “normal”.

I was meeting Paula to see some music and as open as I am about MS, and my life in general, don’t want to appear that I am somehow extra work, a liability, or burden. As I stumbled a bit, trying and having trouble navigating an uneven sidewalk at night, Paula, almost instinctively, grabbed my arm to help steady me, it was a pretty embarrassing moment… 42 years old, unable to let go of my pride, make the right decision, and use the cane. Great first impression, and great attempt at trying to feel normal.

March is MS awareness month. 17 years ago, at the age of 25, my MS diagnosis was hard to come to terms with. Here was a disease that literally appeared overnight for me, hiking one day and then barely able to walk unassisted the next. It doesn’t get much faster than that and my life morphed overnight like I was in the twilight zone. My balance was now gone, never to come back completely.

Doctors continue trying to unravel MS and as much as they know and have learned, still can’t predict, and ultimately tell patients, what their life is going to look and be like in the years ahead. 17 years of visits to neurologists and MS clinics and I can tell you exactly what could happen, I’ve seen it with my own eyes and what could happen isn’t the scariest part of MS for me. As I get older, as the disease progresses and symptoms worsen, what scares me most is the prospect of potentially relying on others to help me. It’s my fear of being a burden.

MS can be an extremely isolating disease, it limits hobbies, where I go, the activities I do with people. MS is embarrassing, it leaves me feeling like I’m being judged, that my own worth has somehow been diminished by something I have no ability to define, control, or fix.

At 25 I was upset about my diagnosis, upset about the lost potential, normalcy, my physical abilities. MS has changed my life and lead me down paths that I likely wouldn’t have gone down otherwise. I’m happy with who I am, but do I still struggle? Every day. I struggle physically and mentally.

There’s nothing that can really prepare you for the changes. Even after 17 years, the lessons keep coming, people come and go, the mental health aspect (of the chronic illnesses, MS has the highest rates of depression, around 50%), the perpetual uncertainty, the fear and anxieties, or infinite desire to feel normal again. Behind the smiling and laughing there’s a silent struggle that I’m not sure anybody can fully understand until they have to live it as well.

Going back to that evening with Paula, while being embarrassing, it offered a slight glimmer of hope. There are people out there who care without being asked, show kindness, and understanding rather than jokes, and toxic positivity. As of right now, nothing is going to bring the feeling in my hands back, it’s not going to fix my balance, or miraculously cure my fear of the future and the uncertainty it holds, but then again love, compassion and caring won’t either, but they at least make it bearable. ∎

JONATHAN KOHANSKI

Open Water Swimmer, Photographer & MS Warrior www.awarenessties.us/jonathan-kohanski

Hi, I'm Jonathan, I'm a wanderer of sorts, looking to further enrich lives and share experiences that show we are all capable of truly amazing feats that push my own boundaries and can many times turn heads. I'm a sucker for raw and real stories and attempt to share my own, with all the good and bad through that same lens. I'm always open to finding my next adventure that will help me to continue writing the stories that can help others overcome their own demons. I'm a lover of the water and spend a lot of my free time in it, whether it be swimming, body-boarding, or taking photographs while in it. I was diagnosed with MS at the age of 25 and it has changed the course of my life, not just in a physical sense, but also in my perspective of life, what is valuable to me and worthy of my time. We all have our struggles and triumphs, I'm here to share mine and maybe, help others through theirs.

GABY MONTIEL

SINGER, SONGWRITER

FEATURE STORY BY GABRIELLA MONTIEL

WE WILL BE SOMEONE SINCERELY, THE YOUNG

We talk about you under the tall towers of your skepticism

In that shadow that you cast

We gather and bathe in the eye you turn blind

It’s cool and soft in your ignorance

Peaceful, even, if we allow ourselves to

Acknowledge it

We are always speaking

Wrapped around our tongues

Spilling out and dancing with each other

Words cascade over our heads and drip

Delicately into the fires we nurture

That is how we stay so warm down here

Rarely do I catch us looking up

There is nothing for us there

Up there, there is only those bleeding eyes

So convinced everyone sees the same

They assume even their assailant

Gazed upon them through a view of red

It is lonely

It is never acknowledged

For if we believe it

It will shape into something worse

Something worse than the dying fires

Something worse than the cold

Something worse than the bleeding eyes

Something more than death

Beyond the ceasing of existence

But more like the absence of its memory

We are seen as nothing

Our ideas become nothing

We are nothing

So we don’t acknowledge it

So we keep building our fires

So we keep speaking

So we let our words sharpen to thorns

Planting a ladder into the moist soil

And we wait for it to grow

Those, up there

They will see our creation one day

They will see it through their bleeding eyes

One day

We will not only climb that tower

But destroy it, peeling away the stone

Until our fingernails are coated in crimson

And we stand on ruins of jagged rock

Once carved from your words just short of hatred

We will wrap your injured sight with the honey

That grows from our lips

And we will be someone

We are lonely

We are progress and we lay the bricks For the road that follows that large clock Hanging above our heads like a dinner bell

Death will feast on us all You before us

But we will not let those behind Fall beneath new towers

We are lonely

We are young We will be someone ∎

GABY MONTIEL

Singer, Songwriter & Official AwareNow Ambassador for Music & Arts www.awarenessties.us/gaby-montiel

Gaby Montiel has been nationally recognized as a soulful singer songwriter. As a recording artist, Gaby performs throughout southern California and has been requested to write and record songs for social advocacy organizations like AwarenessTies and Fear of Return. In April 2023, she performed as the youngest female music artist for the national Chick Singer Night Showcase at the Ventura County chapter. She recently performed for 300 art and music high school students in the Oxnard School District for the Oxnard Performing Arts Center, leading a songwriting workshop for 89 music students. She was also selected as the youngest singer songwriter for the West Coast Songwriter Association's Winter Showcase in 2024 as well as the only youth to be selected amongst 20 globally for Successfully Magazine.

NICOLE LYNN EVANS

Photo Credit: Daniel Doperalski/Variety

HOLLYWOOD REIMAGINED EXCLUSIVE INTERVIEW WITH NICOLE LYNN EVANS

BEYOND THE SPOTLIGHT

STORYTELLING, STRENGTH & REWRITING THE RULES OF THE INDUSTRY

Nicole Lynn Evans is a force in Hollywood, not just for the roles she plays, but for the stories she chooses to tell. An award-winning actress, writer, and producer, she is redefining what representation looks like—both on screen and behind the scenes. With an unshakable passion for storytelling and a determination that knows no limits, Nicole is building a legacy that challenges industry norms and expands the boundaries of what’s possible.

ALLIÉ: Let’s begin with your journey—specifically, your journey in Hollywood. From the outside looking in, it seems like a masterclass in resilience, creativity, and defying expectations. When you think about the moment you first realized that storytelling—whether on stage, on screen, or behind the scenes—was your calling, what was that moment like? And how did it shape the way you see yourself in the industry?

NICOLE: It’s kind of a long story, but I’ll try to make it entertaining. I’ve always been a very creative kid. My parents really encouraged my brother and me in the arts growing up, so that was just part of our upbringing. I did a lot of choir, school plays, yada, yada, yada. I put on magic shows in my parents’ living room when I was a kid—God bless them

Photo Courtesy: Nicole Evans

NICOLE LYNN EVANS

“If you want to make friends, join an acting class. And get involved in theater. It’s the best education.”

NICOLE: (continued) Then, when it was time to go to college, I had it in my head that I had to get a "big girl" job. I enrolled in all these math and science classes. And I’m good at math and science, don’t get me wrong, but it wasn’t what fulfilled me.

In terms of the moment, I came home from school—it was like my first week in college—and I remember telling my mom, "Oh my god, this is depressing." I was really upset about it, and she said, "Why don’t you enroll in theater courses? Take art classes. You’ve always loved that—why aren’t you doing that?"

It hadn’t dawned on me that I could pursue that as an adult. I don’t know—it sounds ridiculous saying it now, but at the time, it just didn’t occur to me that you could get an education in that. The moment she said that, I went to my computer, enrolled in the right classes, and the rest is history.

I always tell people—if you want to make friends, join an acting class. And get involved in theater. It’s the best education. You learn how to work in a productive environment, on a deadline, on a budget, with multiple personalities, and you have to do public speaking. It really covers everything.

ALLIÉ: Yes! What a great education that is! It’s interesting to me because so many people say, "Oh, but I can’t make a career out of this. I can enjoy it, but I can’t become this." It sounds like you got the right advice at just the right time.

NICOLE: My mom—oh, thank you, Mom! And thanks, Dad, too, of course.

ALLIÉ: Let’s talk about Hollywood’s format. Hollywood has long been de fined by rigid standards—who gets cast, who gets to tell the stories, and what audiences are ready for. As an actress, writer, and producer, how do you navigate these industry walls and rewrite the narrative to make space for stories that reflect the full spectrum of human experience?

NICOLE: In terms of navigating the industry—just putting on my creative hat for a second—I think it’s super important for artists to constantly be working on their craft. Be in active classes, take a seminar, join a writing workshop—just really work those creative muscles. Stay sharp. Be so good they can’t ignore you.

And parallel to that, you have to find your community. For me, that community is the disabled community. It’s really hard to go at this—or any—industry alone. Finding my community within the entertainment space was a game changer. It’s incredibly supportive, it’s a networking environment, and we’re all moving in the same direction— advocating for our community and proper representation. This is critical—you’ve got to find your people.

ALLIÉ: Yeah, absolutely. Finding your people—that’s everything. Let’s talk about your production company. With EZG Entertainment, you’re not just telling stories—you’re building a legacy. What’s the most personal project you’re developing right now, and what truth does it hold that you feel the world needs to see and hear?

NICOLE LYNN EVANS

Photo Courtesy: Nicole Evans

NICOLE: Great question. I have a lot of cool projects I’m working on right now. First up with EZG, we’re working on a docu-series about love and relationships through the perspective of people with disabilities. Separate from that, I’m developing two pilots and a feature. My wheelhouse is edgy, dark comedy with heart and a twist of disability. So, we’re looking for buyers—if anyone’s into that, please reach out to me!

In all of my work, I feel it’s important to show that people with disabilities are just like everyone else. We have the same ups, the same downs, and the same desire for love and connection. There’s no halo or perfect image here— we’re just normal people. And it’s important to show that perspective through the lens of someone with a disability.

ALLIÉ: Let's take a moment and just talk about accessibility. That's an important word, an important topic. Let's talk about some of your work on the ground. What are you doing? And let's talk about reports, too. What can you tell us?

NICOLE: Yeah, so this is really exciting. Easterseals just unveiled their new report called Reimagining Hollywood: A New Lens on Disability Inclusion. It’s an impact report that examines the current state of disability inclusion in entertainment. It highlights the successes and momentum we’ve gained in terms of disability representation, while also addressing where the industry still needs to go to further disability inclusion.

So, Emily Ladau and I, along with Change for Balance and Easterseals, worked on creating these Blue Sky events— which are basically focus groups—where we invited folks with disabilities in entertainment to talk to us about their experiences working in the industry, what’s working well, and what’s not. Through these three different sessions, we walked away with—well, we rolled away, sorry—with eight key insights. They cover everything from celebrating our successes—like Ali Stroker winning a Tony, CODA winning multiple Oscars, and Crip Camp being Oscar-nominated— huge wins for representation. But we also focused on key areas for improvement, such as formalizing the role of a Production Access Coordinator. I have big feelings about that, and I’ll get to it in a second.

Another key takeaway was making sure studios understand that investing in inclusive content and authentic portrayals of people with disabilities isn’t just the right thing to do—it has a great return on investment. Those insights from our Blue Sky sessions were turned into the industry insights page of the report.

From there, we realized that to move forward with the vision of this project, a multimedia approach was needed. That led to our amazing partnership with The Wrap, where we have three featured articles written by Kristen Lopez, a disabled film critic and editor. Additionally, we have a two-part series in Variety that features a roundtable discussion with industry leaders and allies discussing the current state of disability inclusion in entertainment. And, of course, we collaborated with our long-standing partners at HRTS (Hollywood Radio and Television Society) and Film Independent. So we had some incredible partnerships to help bring this report to life.

One of the key insights from the report was the call to formalize the Production Access Coordinator role within productions. This is a critical role—it’s a person who facilitates access needs and serves as a third party between the talent hired to do the job and the studio. Essentially, this is someone you can go to with your access needs, so you don’t have to experience that often uncomfortable feeling of directly disclosing them to an employer.

I know that when I was first starting out in the industry, discussing my access needs was really tough. I didn’t want to seem difficult or feel like I was asking for too much. And that’s not a great feeling to sit with. Having a Production Access Coordinator to facilitate and advocate for you during production is a game changer. It was something that came up repeatedly in our Blue Sky sessions—people really want to see more of this, and I think it’s something networks and studios can implement ASAP. I mean, let’s look at the COVID pandemic—when productions needed to get back online, they created the role of a COVID Coordinator to ensure the set was COVID-safe. That same template can be applied to formalizing and building upon the Production Access Coordinator role. It would create more jobs for people with disabilities and help folks stay employed.

BEYOND THE SPOTLIGHT

Exclusive Interview with Nicole Lynn Evans

https://awarenow.us/podcast/beyond-the-spotlight

ALLIÉ: Nicole, you’ve stood on stage as a keynote speaker, sharing wisdom with those who dream big but face unique challenges. What’s a piece of advice you once gave to someone about pushing through barriers that, in a moment of doubt, you had to remind yourself to follow?

NICOLE: It sounds super cliché, but—don’t give up. Keep moving forward. It’s okay to take a brief pause to course correct or reevaluate your approach—that’s important, and it’s part of the process. But the key is not to get stagnant. That’s where creativity dies. Keep moving forward. You might go in the wrong direction for a minute, but you’ll figure it out and course correct—it’s all part of the journey. A big part of it is figuring out what doesn’t work. You learn just as much—if not more—when something doesn’t work as when things go smoothly.

My call to action to the entertainment industry is this: Greenlight more projects led by disabled creatives. We have incredible stories to tell. And they don’t always have to be about disability—but we do need a bigger seat at the table.

ALLIÉ: I do have one more question for you today, Nicole. Hollywood is an illusion maker, but your life has been about something very real. Strength, determination, and the power of presence. When you think about how you want to be remembered in the industry, what's the story you hope they'll tell about Nicole Lynn Evans?

NICOLE: With this question I kind of feel like I'm writing my own obituary at this moment.

ALLIÉ: You do have some dark humor.

NICOLE: My hope is that people remember me as kind, friendly, and fun to work with who knows how to tell a good story. I just want people to feel good at having worked with me or any project that I'm a part of because life's too short for anything else. ∎

‘Hollywood Reimagined’ is an exclusive column produced in partnership with Change For Balance and AwareNow Media.

TAP/SCAN TO LISTEN

ASHLEY ANN COLITIS PATIENT & ADVOCATE

PERSONAL STORY BY ASHLEY ANN

GRIEVING THE LOSS OF MYSELF

LIFE WITH CHRONIC ILLNESS

One of my biggest struggles with IBD has been grief. And I’m not grieving the loss of a family member, a friend, or a loved one—I’m grieving the loss of myself. I was born with an incredible desire and urge to be social and active. It was a huge part of who I was, what made me, me. When I became sick, I had no idea I was about to slowly watch the person I had once been, fade away.

From Social to Solitary

I became quiet and was unable to leave the house. I watched as my friends and family carried on with their lives, making memories as my illness robbed me of mine. I sat bitterly observing and praying for my chance. It felt as if the life I had built was slowly slipping through my fingers, and there was nothing I could do to stop it.

10 Years of Chronic Illness

In the past 10 years of being chronically ill and disabled, I began to forget the girl who "died." I started to forget what life was like without pain, repression, anxiety, and depression. The version of me who lived without constant fatigue and fear seemed like a distant memory.

The Fear of Never Healing

I was beginning to give up hope that I would ever be healthy again. I’m terri fied that I will never heal. I know that many people with chronic illness carry this fear—will I ever feel like myself again? It’s a hard reality to face, but it’s part of the journey we never expected to take. ∎

Don’t feel the pressure to fill the void with words.

KEVIN HINES SUICIDE PREVENTION ADVOCATE & SPEAKER

‘BE HERE TOMORROW’ EXCLUSIVE COLUMN BY

KEVIN HINES

HOW TO HELP LOVED ONES HEAL

THE TOP 5 WAYS TO SUPPORT SOMEONE WHO IS GRIEVING

Grief is one of the most profound, gut-wrenching experiences that a person can go through. It touches every part of who we are and often leaves us feeling lost, alone, and uncertain. Whether someone is grieving the death of a loved one, the end of a relationship, or even a personal loss, their pain can feel all-consuming. The reality is, grief is unique to each person, and there’s no one-size-fits-all approach to supporting someone who is grieving.

In my own journey, as someone who’s survived a suicide attempt and battled mental illness, I’ve learned the immense value of compassionate, understanding, and unwavering support. When we grieve, we don’t just lose a person, we lose a part of ourselves, and that’s a pain that can be hard for others to understand. However, showing up for someone in grief, in ways that feel right for them, can be a lifeline—just like it was for me during my darkest days.

I’ve had the privilege of supporting loved ones through their own grief and being supported by others, and from that experience, I want to share the top five ways you can be there for someone who’s grieving.

1. Show Up and Be Present—Even When You Don’t Know What to Say

The first and most important way to support someone who is grieving is to simply show up. It sounds simple, but it can be incredibly difficult. Often, people avoid grieving friends and family members because they’re unsure of what to say. The truth is, there are no magic words to ease someone’s pain, and most people grieving won’t expect or need a perfect phrase to heal. What they need is presence.

Sometimes, the best thing you can do is to sit with them in silence. Don’t feel the pressure to fill the void with words. Just being physically present, holding space for their grief, and offering a listening ear can make all the difference. I can’t tell you how many times, in my own darkest moments, a friend simply sat with me and didn’t try to solve anything. Their presence was a comfort more than any words could be.

Grief can make people feel isolated, and often, they don’t know how to ask for help or how to express their pain. When you show up, you’re sending the message: “I’m here, and I’m not going anywhere.” Sometimes, that’s enough to help someone feel seen, heard, and understood.

2. Listen More Than You Speak

In many cultures, there’s a tendency to try to fix things when someone is grieving. People often offer advice like “They’re in a better place” or “Time heals all wounds.” These well-intentioned phrases can feel dismissive to someone in the throes of grief. What people need most in these moments is not to be fixed, but to be heard.

When you’re supporting someone who is grieving, give them the space to talk if they want to. Let them share their pain, their thoughts, their memories, and their fears. Often, they just need a safe, non-judgmental place to express the overwhelming emotions that they’re experiencing. I can remember moments in my own life when all I wanted to do was talk about my struggles and my pain, and a good listener was the only thing I needed.

Listening means letting the person lead the conversation. Don’t interrupt with your own stories unless it’s to relate to their experience—this isn’t the time to talk about your own grief or experiences. Stay focused on them. When you listen with empathy, you communicate that their feelings are valid and that you’re not going to rush them through their process.

One of the most valuable lessons I’ve learned in my own advocacy for mental health is the importance of allowing people the space to grieve on their own terms. Some days, they may be ready to talk; other days, they may want silence. Be patient, and trust that their healing process is unique to them.

3. Offer Practical Help, Not Just Emotional Support

When someone is grieving, they may struggle with even the most basic tasks. The emotional toll of grief can be so overwhelming that everyday activities like cooking, cleaning, or taking care of themselves can seem impossible. While emotional support is crucial, offering practical help can also be incredibly meaningful.

If they’re open to it, offer to take care of specific tasks that might be weighing them down. Offer to cook a meal, run errands, take care of their pets, or help with household chores. These small acts of kindness can be incredibly relieving, even if it’s something as simple as picking up groceries or walking their dog.

Sometimes, grieving people don’t know how to ask for help, or they feel guilty for needing it. Offering speci fic assistance can take some of the pressure off, making them feel less burdened by the small day-to-day responsibilities. It’s not about doing everything for them, but it’s about lightening their load during an unbearably heavy time.

In my own experience, when I was struggling, small gestures like a friend picking up my favorite food or offering to handle a stressful errand helped me focus on my emotional healing rather than getting overwhelmed by logistics. Simple, practical acts of kindness show that you care and that you understand their struggle.

4. Respect Their Grief Journey—And Be Patient with the Process

Grief is a journey, and it doesn’t have a clear, linear path. People may experience a wide range of emotions—from sadness and anger to guilt, confusion, and even relief. There’s no timetable for grief, and it may not “look” the way others expect. This is why one of the most important things you can do when supporting someone who is grieving is to respect their journey and be patient with the process.

Grief doesn’t have a “right” way to be expressed, and the person who is grieving may not follow a predictable timeline for healing. Don’t rush them or pressure them to “move on” or “get over it.” Instead, encourage them to take the time they need, while also checking in to see how they’re doing in subtle ways. There may be days when they want to talk about their loved one, and other days when they just want to be left alone.

Allow them to grieve at their own pace, even if it seems like they’re stuck or aren’t progressing the way you might expect. It’s important to understand that people grieve differently, and some people may not find closure for a long time, or they may never find it at all. And that’s okay.

5. Encourage Professional Support, But Don’t Force It

While emotional support from friends and family is vital, it’s also important to recognize that grief can be a complex and difficult experience to navigate on your own. If the person is open to it, encourage them to seek professional help. Therapy, counseling, and support groups can provide invaluable tools for someone who is grieving, and sometimes, professional support is exactly what someone needs to begin healing.

However, it’s important to tread carefully when suggesting therapy. Grief can be deeply personal, and someone may not be ready to seek professional help, or they may feel overwhelmed by the idea of going to therapy right away. If that’s the case, don’t push them into it. Instead, let them know that the option is available and that seeking support is a sign of strength, not weakness.

“There’s no shortcut to processing grief, but with the right support, people can navigate it with more strength and resilience than they ever imagined.”

When someone is grieving, they might feel like they’re losing control or that they’re completely alone. Having someone gently encourage professional support can make them feel more empowered and less isolated in their experience. Sometimes, just hearing “There’s no shame in getting help” can be a lightbulb moment for someone struggling with their grief.

Conclusion: The Power of Compassionate Presence

Supporting someone who is grieving is about showing up, listening, and being there in ways that make them feel heard and supported. It’s about giving them space to feel their emotions without judgment, offering practical help when needed, and encouraging them to take the time they need to heal.

The most important thing is simply showing that you care. Grief can make someone feel incredibly isolated, so by offering your presence and empathy, you can help them feel less alone in their pain. And above all, remember that healing takes time. There’s no shortcut to processing grief, but with the right support, people can navigate it with more strength and resilience than they ever imagined.

If you are supporting someone who is grieving, remember that your presence, your kindness, and your patience may be the very thing that helps them find their way through the darkest days. You don’t have to fix their pain, but simply being there for them—just as I’ve been fortunate to have others be there for me—can be a powerful source of comfort.

Grief is a long road, but with compassion, patience, and understanding, we can walk it together. ∎

Resources from Kevin Hines: https://beacons.ai/kevinhinesstory

Suicide Prevention Advocate & Speaker www.awarenessties.us/kevin-hines

Kevin Hines is a storyteller. He is a best selling author, global public speaker, and award winning documentary filmmaker. In the Year 2000, Kevin attempted to take his life by jumping off the Golden Gate Bridge. Many factors contributed to his miraculous survival including a sea lion which kept him a float until the Coast Guard arrived. Kevin now travels the world sharing his story of hope, healing, and recovery while teaching people of all ages the art of wellness & the ability to survive pain with true resilience. His motto: #BeHereTomorrow and every day after that.

KEVIN HINES

‘SCARRED NOT BROKEN’ EXCLUSIVE COLUMN BY LORI BUTIERRIES

HAVE MERCY WHEN HEALING FEELS LIKE HARM

Sometimes, I have to hurt my terminally ill and physically disabled son to help him.

nvasive procedures that make him cry may be necessary to prolong the longevity of his life. I hold him down while he pleads with me to stop, knowing that if I let go, I am surrendering him to something far worse.

They brought a local to the Battalion Aid Station (BAS) for help. The Afghan civilian’s head had been crushed between two Conex boxes while working at the Forward Operating Base (FOB). Brain matter and cerebrospinal fluid leaked from his ears, yet his chest still rose and fell with each labored breath.

“Mommy, help me!” he cries, but I can only hold him in place and whisper that I’m here. Offering him my presence instead of the freedom from pain that he begs for.

Since he wasn’t dead yet, medical didn’t want to waste the opportunity for hands-on training. They practiced intubating in front of the people who had brought him in, who watched, believing we were saving their friend. They didn’t know the truth.

I had a choice then. I could participate in what felt like cruelty masked as care, I could say something, like “This isnt right,” or I could walk away. I left him lying on that table at their mercy and ran from the barbarity of the scene to cry in private.

But there’s no running now. No looking away. No escape from the impossible choices. This time, I stay. I do what needs to be done, even when it breaks my heart.

Lord, have mercy on my son, even if I was unable to grant it myself. ∎

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.

Access

to

unlimited possibilities

makes a difference.

DR. SHANNA EGANS ASSISTANT SUPERINTENDENT, EDUCATION SERVICES, PERRIS UNION HIGH SCHOOL DISTRICT

‘PEQ PERFORMANCE’ EXCLUSIVE

COLUMN BY SONJA MONTIEL

FROM PRE-MED TO LEADERSHIP IN ED

THE TRANSFORMATIVE JOURNEY OF DR. SHANNA EGANS

Dr. Shanna Egans’ path to becoming an educational leader is a testament to the power of exploration and resilience. Initially set on a pre-med track, Dr. Egans completed her degree in science with the intention of attending medical school. However, a pivotal experience as a physician assistant helper at USC County Hospital revealed that the medical field was not her true calling.

"I realized I didn't like it," Dr. Egans recalls. The environment, the security protocols, and the trauma ward's intensity were far from what she had envisioned. Seeking alternatives, she explored various experiences, including an exposure at the coroner's office and volunteering with the LAPD's Scientific Investigations Division. Despite her impressive qualifications and top ranking on the Department of Justice test for criminalists, Dr. Egans found herself at a crossroads.

It was her husband's suggestion to try substitute teaching that ultimately changed her trajectory. Initially resistant, Dr. Egans reluctantly took on a substitute teaching role where she hated the experience. It wasn’t until she was suddenly offered a classroom of her own, an earth science course, that she discovered a passion. "I fell in love," she says. "I realized it wasn't teaching I hated. It was not having the time or opportunity to create a classroom culture and love for learning science that frustrated me as a substitute teacher."

Dr. Egans' commitment to her students and her love for science led her to pursue a full-time teaching career. Despite initial challenges in securing a permanent position, a chance encounter by the help of her husband opened the door to a long-term role at Baldwin Park Unified School District. There, she thrived as a science teacher and later as an administrator, creating innovative programs like a forensic biology course that received the University of California’s “A-G” approval status on its first submission, a very difficult process to achieve when it comes to course credits in California.

For Dr. Egans, the essence of teaching lies in connecting with students and igniting their passion for learning. She emphasizes the importance of helping students find something they love in school, particularly for those facing significant obstacles. "I just wanted to help them find that one thing, because I knew the diploma mattered. In the communities I taught in, many students fall short on a high school diploma, and that diploma meant everything when it came to opportunities for their future," she explains. Her dedication to her students' success and her creative approach to teaching have left a lasting impact on countless lives.

Reflecting on her journey, Dr. Egans acknowledges the role of exposure and curiosity in shaping her career. "When I think of becoming, I think about how I became what I am because people exposed me to things that sparked my interest," she says. Her experience of becoming wasn’t a solo journey, it was in community. The more that people presented new ideas and opportunities to her, especially where she wasn’t looking, the more she expanded what could be possible for her. This is a lesson she hopes to impart to the next generation.

I just wanted to help them find that one thing, because I knew the diploma mattered.

DR.

SHANNA

EGANS

ASSISTANT SUPERINTENDENT, EDUCATION SERVICES, PERRIS UNION HIGH SCHOOL DISTRICT

“I want kids to see someone that looks like them in a role where they didn’t necessarily see it.”

Dr. Egans' journey didn't stop in the classroom. Driven by her desire to make a broader impact, she pursued a master's degree in educational administration with her sister, balancing a full time teaching career and commuting to the University of Redlands (there were no online classes then). This experience not only strengthened her resolve but also introduced her to the possibility of earning a doctorate in education. "I never lost that desire to be a doctor," Dr. Egans shares. "I just didn't know that I could be a doctor in education." Inspired by her professors, she decided to pursue a doctorate in education, determined to achieve her lifelong goal.

Transitioning from teaching to administration was a significant step. Dr. Egans prepared herself mentally for the change, knowing she would have to let go of her roles as a club advisor and cheerleading coach. "I knew I could make an impact and wanted to serve students as an administrator," she reflects. This transition also meant accepting the possibility of moving to a different school district, a challenge she embraced with courage.

AwareNow Podcast FROM PRE-MED TO LEADERSHIP IN ED

Written and Narrated by Sonja Montiel https://awarenow.us/podcast/from-premed-to-leadership-in-ed

Serving as an educational senior leader, Dr. Egans is passionate about representation and providing students with diverse role models. "I want kids to see someone that looks like them in a role where they didn't necessarily see it," she explains. According to a 2023 report by AASA, the number of black superintendents nationwide increased from 2.6% to 4.4% over the past decade, while Hispanic/Latino superintendents increased from 1.9% to 3.1%. Dr. Shanna Egans is proud to be a woman of color in a predominantly white and male field, and she hopes to continue being a source of inspiration for many students.

Dr. Egans also advocates for equal access to opportunities, recognizing the disparity between schools in af fluent areas and those in poorer communities. "Access to unlimited possibilities makes a difference," she emphasizes. Her goal is to expose students to a wide range of career options and experiences, helping them realize their potential starting by providing them with access to information.

When it comes to the near future, Dr. Egans hopes to see education systems prioritize engagement and connection with students. Her journey from aspiring doctor to passionate educator and leader is a celebration of resilience, curiosity, and the profound impact of education. Dr. Shanna Egans’ story is a powerful reminder that becoming is a community effort, and she encourages others to share their knowledge and opportunities with the next generation. ∎

About Dr. Shanna Egans

Dr. Shanna M. Egans is the Assistant Superintendent of Educational Services at Perris Union High School District, bringing over 20 years of experience in education to her role. Her career has been dedicated to fostering student success and ensuring that all students receive the support necessary to thrive academically and personally. As a published neuroscientist, her research experience drove her love for science and she discovered that her true passion lay in education. Dr. Egans is passionate about creating systems that empower educators and administrators to think ahead and adapt to the evolving needs of students. Her work continues to drive positive outcomes by removing the barriers for students to have exposure and access to multiple opportunities for success.

SONJA MONTIEL

Co-Founder of PEQ Performance Consulting www.awarenessties.us/sonja-montiel

SONJA MONTIEL (MA Education) is a cofounder of PEQ Performance Consulting LLC and cohost of “The DH Effect” podcast. She and her partner, Hilary Bilbrey, guide individuals, families, and teams to consistently reach successful outcomes through positive and emotional intelligence strategies. During Sonja’s 23 years working with thousands of teens and young adults worldwide, she began to witness many societies creating an unhealthy hyper-achieving culture that misguides our young people in their pursuit of living a life of fulfillment. Sonja is changing that narrative highlighting educators around the world who dare to think differently about education. (www.peq-performance.com)

www.IamAwareNow.com

TAP/SCAN TO LISTEN

When I advocate, I want the person suffering to be treated with compassion and as as whole person – how I wanted to be treated when I was sick.

KATIE DALE AUTHOR & MENTAL HEALTH ADVOCATE

EXCLUSIVE INTERVIEW WITH KATIE DALE

STORMS & STRENGTH

TURNING PAIN INTO PURPOSE FOR MENTAL HEALTH ADVOCACY

Katie Dale has weathered the storms of serious mental illness and emerged as a powerful voice for change. As an author, speaker, and advocate, she uses her personal journey with bipolar disorder to fight for those too often overlooked by the mental health system. Through her leadership with the National Shattering Silence Coalition, Katie is on a mission to dismantle stigma, push for reform, and ensure that individuals with serious brain disorders receive the care and compassion they deserve.

ALLIÉ: Your journey with bipolar disorder began at 16, a time when most teenagers are just beginning to figure out who they are. Can you take us back to that moment—when your world suddenly changed—and what it felt like to navigate something so immense at such a young age?

KATIE: Yeah, for sure. I entered a new environment that year and switched from a large public school to a private school setting. The changes triggered a lot of fear in me, which then produced an avalanche of depression. When I tried to fit in – as most of high school is about – and when my expectations of what the new environment should be

KATIE: (continued) weren’t met, my disappointment turned to discouragement which turned into a downward spiral of thinking and feeling suicidal. It felt like the rug had been pulled from underneath. Not only was I facing an outside environmental dynamic but simultaneously an inner storm developed beyond my control.

ALLIÉ: You’ve been open about your psychiatric hospitalizations and how they shaped your path. What’s one moment from that time—whether painful, transformative, or both—that still stays with you today, and how has it in fluenced the way you advocate for others?

KATIE: My reality today has been reinforced by some pretty intense moments in 2012 in the hospital. There was another patient that approached me telepathically in the psych unit I was con fined to. I wanted out, and this patient speaking in to my head supernaturally was telling me I could leave with him. I didn’t recognize him, so I stayed my ground. My “crazy” for being a zealous Christian is not the same as the “crazy” I experienced in psychosis, yet the mental and spiritual, physical too, are all intertwined. I discern today as I did back then, that there are things that cannot be explained any better in psychology than they can be spiritually, according to the Bible. Today, I teach and advocate for those that Jesus referred to as the “least of these” – those who can’t even help themselves because they don’t realize how sick they are. I also emphasize that God’s voice can still be heard through humility of heart and not necessarily while one is out of her mind. When I advocate, I want the person suffering to be treated with compassion and as as whole person – how I wanted to be treated when I was sick.

ALLIÉ: Mental illness is often misunderstood, and people living with serious brain disorders face immense stigma. If you could change one widespread misconception, what would it be, and why?

KATIE: That there are distinct separate faculties of the person, and that they each need to be cared for: the mental (how we process and project our beliefs, thoughts, and feelings), the physical (including biochemical imbalances that can effect our mental), the spiritual (the lens through which a person perceives truth and falsehood). They are all intertwined, like I mentioned, and all deserve to be addressed with compassion, especially when any are compromised.

“There are macro and micro changes that are needed, so advocating at a grassroots level can help spread that awareness.”

ALLIÉ: As the Co-Chair of Communications Committee for the National Shattering Silence Coalition, you work to bring attention to the urgent needs of individuals with serious mental illness. What are the most critical changes you believe need to happen in our mental health system today, and how can people take action to help drive that change?

KATIE: There are macro and micro changes that are needed, so advocating at a grassroots level can help spread that awareness. I believe the most critical changes are to address SMI as a brain illness, to classify Schizophrenia, Bipolar Disorder, Schizoaffective Disorder as neuropsychiatric conditions and to re flect this in our mental healthcare laws, insurance policies, and treatment solutions as such. Calling representatives to repeal the IMD Exclusion, educating families on HIPAA and how to work with the hospitals, to providing long term housing solutions backed by federally funded and standardized medical policies. All of these measures need to be in place and enforced for the least of these and their families who can’t afford to be sole caregivers without the professional backgrounds and entire support team that’s needed.

ALLIÉ: As a mother, wife, and advocate, you balance so many roles—each carrying its own weight. How do you care for your mental health today while continuing to fight for change in a system that so often fails those who need help the most?

KATIE: First thing I do when I wake up in the morning: coffee, meds, and quiet time. I start my day off the same way and the right way to continue my health. After making a cup of coffee to wake up, I take my mood stabilizer and antidepressant which keep me sane, and then I head to my desk to have a quiet time with God. That means I two-way prayer journal – writing out my prayers, dreams to God, and dialogue with him in the stillness of that place. He answers me, I write his answers back. Then I might read a devotional and search the Bible for answers too. I know the morning is the best time of day for me mentally, emotionally, physically, spiritually. This sets my day in the right direction and gives me time to work on my writing and other advocacy projects too. Putting God first, the rest falls into place. In doing this, He empowers me and I feel strengthened to face the day and be who I’m called to be. ∎

DEBORAH WEED

FOUNDER OF THE SELF-WORTH INITIATIVE

‘THE SELF-WORTH INITIATIVE’ EXCLUSIVE COLUMN BY DEBORAH WEED

BECOMING HOW

CREATIVITY SAVES US WHEN EVERYTHING ELSE FALLS APART

When we’ve lost our health, our income, or the ones we love, the world can feel like it has flipped upside down. Grief, pain, and uncertainty creep in, and suddenly, everything feels offkilter. But there’s one thing that has always, without fail, been my counterbalance—creativity. It has literally and figuratively saved my life time and time again. This time is no different.

I am at the grandma stage of life, but instead of slowing down, I’m diving head first into uncharted waters. I am creating something magical—a brand and platform designed to empower little girls to discover their power and style through Paisley’s Fashion Forest

For years, I envisioned Paisley’s Last Quill (the prequel), as a full-scale animated movie, Pixar-style. A Broadway musical. A brand so enchanting that it could light up the imaginations of children everywhere. But let’s be real—I don’t have a massive studio budget backing me. What I do have is something even more powerful: unshakable passion and the willingness to learn everything it takes to bring this vision to life. No money? No problem. I am rolling up my sleeves and figuring it out. I’m learning how to: produce animated music videos and fun DIYs for YouTube Kids, develop an app to expand the Paisley universe, create beyond-charming merchandising, build a viral social media presence, and market like a pro with no budget. I started with a book, Paisley’s Last Quill, to test the brand, and the response was overwhelming—all 5-star reviews, raves from parents and kids alike, and DIY events that amped up its relevance. It confirmed what I already knew: this brand has legs, and it’s time to let it run.

I know what it’s like to drown in chronic pain, to have medication fail, to feel exhausted to the core. But here’s the truth: passion heals. Passion grabs your focus and yanks it away from suffering, redirecting it to living. Building Paisley’s Fashion Forest is my lifeline. Maybe you need one, too. Maybe you’ve been through loss, or you’re battling something unseen. Maybe you think it’s too late to chase a dream. I am here to tell you: it’s never too late to create something beautiful. Your dreams don’t expire. Your vision isn’t invalid because of your age, your health, or your financial limitations. If you have passion, you have everything you need to begin. I want to share this journey with you. The late nights, the struggles, the breakthroughs, the lessons. Because maybe, just maybe, you’ll realize you have a story to tell, a project to start, a dream that’s been waiting patiently for you to give it life. So, let’s become. Let’s create. Let’s turn our pain into purpose and make magic out of nothing. Who’s with me? ∎

Deborah Weed is a whirlwind of creativity and motivation, passionately championing self-worth through her Self-worth Initiative. Her mission? To help families and their kiddos live authentically, energetically, and joyously! Deborah's journey began with a personal crisis: after dazzling in high-pro file roles like working on a $26 million pavilion for KIA Motors and being Citibank's Director of Development, she faced a misdiagnosis that left her bedridden for three years. Her discovery of a 1943 copper penny worth a million dollars turned her perspective around— if a "worthless" penny could be so valuable, so could she! Inspired, Deborah wrote and produced The Luckiest Penny, an interactive musical that teaches kids about self-worth. As a motivational speaker, Deborah brings fun and inspiration to everyone, proving that self-worth is a joyful, transformative adventure. Check out Paisley’s Fashion Forest on YouTube: https://awarenow.us/video/paisleys-fashion-forest

DEBORAH WEED Founder of the Self-Worth Initiative www.awarenessties.us/deborah-weed

ELLA MEEK CO-FOUNDER OF KIDS AGAINST PLASTIC

‘GLOBAL GOOD’ EXCLUSIVE COLUMN BY

TANITH HARDING

PLASTIC-FREE FUTURES

AMY & ELLA’S MISSION TO EMPOWER THE NEXT GENERATION

Amy and Ella Meek are two sisters that have been on a journey to rid the world of plastic pollution since a very young age. The sisters founded multi-award winning Kids Against Plastic when they were just 12 and 10 years old respectively. Now 21 and 19 they are still very much driving the organisation with support of the KAP Development Team to ensure the initiative continues to be youth led.

TANITH: Amy and Ella, it’s been 9 years since you founded Kids Against Plastic, how does it feel to have an organisation that is almost a decade old?

ELLA: It’s honestly so insane. We started it when we were so young, and now we're adults and at university, but it just feels like we've come a long way and not just in ourselves, because the progress that we've seen in the charity is shifting away from being about us and our campaigning to involving more of the youth, empowering more young children and getting schools involved. That's what we really wanted to see with the charity. So it's been such a long time, but that progress has kind of shifted away from us in the way that we wanted it too, and it's been an amazing journey.

TANITH: I know that you two personally have picked up a phenomenal amount of plastic litter, but your 1 Million Pick Up campaign (at last check) is up to 876,631 pieces now! Tell us about the campaign and how people can contribute?

AMY: The 1 Million Pick Up campaign is something we're running with one of the youth members of the charity. The charity is about uplifting young people in issues they want to make a difference on. This campaign is spearheaded by one of our members in Spain who’s 11 years old and really passionate about wanting to remove plastic from the environment. She used to do a litter pick every time she walked to school, which made a massive difference in her local community and she wants to amplify the amount of litter picked up, raise awareness about the international picture of litter and how everyone can get involved in tackling that.

As part of the campaign, on the website we have the map with the rolling total of litter that's collected, which we track through our litter logging app we've developed with ESRI, the Mapping Agency, which people on litter picks use to log each bit as they go along. Then they can add their location and it will appear on our global map of litter picks. 1 million is the target which Ali wanted to get completed by her 11th birthday last year, but a million is a lot of pieces of plastic! We're getting there though. Each week at the Kids Against Plastic Club we do a rolling total of the amount that's been collected. It's really nice to see so many people getting involved. If anyone reading this wants to get involved, you can go to our website and check Ali's map - from there you can see how to access the app and log your own litter picks.

TANITH: Your Plastic Clever Schools initiative has been incredibly successful over the years but I am aware you have now launched Climate Clever Schools to go alongside. How does it work and how do the two differ?

ELLA: The scheme follows a similar step by step process for schools to complete, which is all about learning about the problems, investigating the challenges within your own speci fic school and the final stage is acting on those and making changes. Like with Plastic Clever, we provide all of the resources and support a school might need going through this journey. One of the hardest parts is identifying the problems within the school, especially for climate change, so we really support schools through that journey. Plastic Clever and Climate Clever are so interlinked because plastic pollution and climate change are interlinked as problems. That's why the schemes really do work. We've seen schools doing both of them so it is amazing to see the success Plastic Clever has had and then being able to launch the Climate Clever journey as well. To be able to implement two schemes for schools, potentially to get involved in, is really great, and hopefully something amazing for the kids to get involved in and start their own journeys.

TANITH: KAPtat, your campaign to reduce the plastic tat that magazines give away has now led to the setting up of a Sustainability Roundtable with UK publishers which you are a part of - tell us more about this?

AMY: KAPtat’s been running for a couple of years now, with another young person who’s part of the charity, Skye Neville. She was in the news a couple of times around her campaign and petition, which had an amazing amount of signatures but wasn’t getting the attention it deserved from supermarkets. She got Waitrose involved and they agreed to stop selling magazines with plastic on the front. But it's very hard to drive change in the publishing industry and retail sector. It takes a lot of time and effort, and she did an amazing job. She got in touch to see if we could support and that's where KAPtat came about.

We targeted supermarkets to stop magazines being sold that had cheap plastic tat on the covers and drive the publishing industry to be more sustainable.We supported Skye through developing letter writing tools to get schools and young people involved. We had hundreds of school kids around the UK writing amazing letters to UK supermarket CEOs, in particular Ken Murphy, who was CEO of Tesco, and the primary person we were writing to at the time. We had amazing letters, Some of the letters also included posters that kids had drawn of Ken Murphy, throwing a plastic bottle in the ocean etc. - amazing and creative things that only kids can get away with! Then we posted letters to the supermarket HQ’s every day for over 100 days. From that we managed to get some meetings with supermarkets, the first one with Tesco, which didn't accomplish a huge amount, so we kept going. Then with Morrisons and a few members of the publishing industry, a few months later. It was great to start a dialog with the publishing industry. There's now been this sustainability roundtable setup, which has members of the industry and members of Kids Against Plastic. It’s not only me and Ella, we’re getting some of the young recipients of these magazines to sit down at a table with members of the publishing industry and tell them what they would want to see on a magazine.

AMY: (continued) It’s not about trying to ruin kids fun or trying to get rid of the toys. It's about trying to make sure that when kids do get them, if it's the only toy that they get for a long time, that it’s something long lasting, that's got good play value, that's sustainable and something that adds value to a magazine and isn't just a five second attraction to try and get it off the shelves. It’s been great to have some meetings so far, and hopefully they will continue into the future.

TANITH: In addition to all of the above (and much, much more we don’t have enough time to cover) you have recently launched Action Academy focusing on empowering young people. How does it work and how can young people access?

AMY: The Action Academy is something we've been thinking about for a couple of years and came about from having so many young people, including ourselves, when we started our journey, wanting to do something about an issue they cared about, but feeling like they lacked some of the confidence or skills to make their voices heard. It’s scary to stand up in front of your peers, adults or large rooms of people and talk about something that is really meaningful to you, never mind knowing how to communicate online, or through letters to MPs or head teachers. It's quite daunting when you're a young person starting your journey, wanting to do something but not knowing where to start. The Action Academy is an online training platform providing tools to young people to develop those key skills. It has three areas that it covers in particular - public speaking, writing and video making - and it's delivered through videos presented by me and Ella and featuring other youth activists who have had their own journeys making a difference. It also contextualises the impact that youth social action can have, not only for young people that get involved, but also for communities and society. As with everything we do, it's completely free. It's accessible through our website and aimed at kids who are part of the Kids Against Plastic Club. but you can also just access Action Academy itself, if you want to do the program and not join the club. We hope that it will be a useful tool for kids in the position we were nine years ago. It's amazing to see kids that are working through it and have completed it and the things they're uploading in their evidence pieces, the presentations they're doing and the videos they're making. It's inspiring and hopefully it'll continue to be something that's used.

TANITH: It’s so impressive how much you have accomplished together over the last 9 years and is demonstrative of how close you are as sisters, but what does the future hold both together and separately?

ELLA: That’s one of those questions that at our age, is still very scary! We are both studying our respective courses at our respective universities, but we're still very close as sisters, which is really nice and the distance hasn't changed that either, which is lovely. I think for our separate journeys, as much as we are going to go off and do our courses, or go into different jobs, we're definitely not leaving the charity behind. I think it's kind of impossible to do that when we've been working on it together for so long. It's a part of our lives now, which is amazing, and as much as the aim of our charity is going to be to pass on a lot of these roles to younger children, to get involved in and flourish in their own ways, it doesn't mean that we're going to be leaving it behind completely, absolutely not. We still want to stay as as involved as we're allowed to be in a charity that's called Kids Against Plastic (as we are technically adults), but we're going to have to see where our separate journeys go. Who knows what the future holds for that, but we definitely know that it will be somewhat related to Kids Against Plastic, youth empowerment and the environment in some way. ∎

Find out more about the campaigns and initiatives mentioned in the article: https://kidsagainstplastic.co.uk

https://kidsagainstplastic.co.uk/alismap https://climateclever.co.uk/ccswelcome

Director of International Development, The Legacy Project, RoundTable Global www.awarenessties.us/tanith-harding

Tanith is leading change management through commitment to the RoundTable Global Four Global Goals of: Educational Reform, Environmental Rejuvenation, Empowerment for All & Creativity. She delivers innovative and transformational leadership and development programmes in over 30 different countries and is also lead on the international development of philanthropic programmes and projects. This includes working with a growing team of extraordinary Global Change Ambassadors and putting together the Global Youth Awards which celebrate the amazing things our young people are doing to change the world.

TANITH HARDING

“I

GABRIELLA MONTIEL

SINGER, SONGWRITER & OFFICIAL

Photo Credit: Sarah Krick/Stylist: Amanda Lim

FEATURE STORY BY GABRIELLA MONTIEL

BECOMING HANNAH

HANNAH LANIER’S JOURNEY OF PASSION & REPRESENTATION

Ever since she was young, Hannah Lanier has always been a natural artist. Creativity was in her nature, something she attributes to her similarly artistic family. Whether it was strumming a toy guitar, choreographing dances, or reenacting dramatic scenes for her family to watch, Hannah’s passion for the arts always shined through.

However, it wasn’t until a special commercial audition that she realized acting was her true passion, or as Hannah says, “Oh yeah, acting can be my THING.” (Of course, this audition would place her on a set with none other than Oprah!) The experience created a sense of belonging for her, as if she had found her place. With her loved ones around her, she embraced the new environment, which would be the beginning of a flourishing journey.

Like many artists, Hannah’s development from an aspiring performer into a professional actor was not simply granted to her. Rejection had intertwined itself with her career, and she received countless noes. During this time, it was difficult for her to acknowledge herself as a “true actor”, though she persisted, as this was the very thing that fielded her passion. Artists hold the tormenting storm of curiosity and life on their shoulders, but as a compensation for this burden, passion parts to success. Finally, at just 14 years old, she earned roles in Roadhouse and Lioness almost simultaneously. The news was overwhelming and exciting. It emphasized all the hard work, sacri fices, and resilience she had shown over the years. Every “no” she had received up to that point felt as though it had led her to this pivotal moment. It was then she knew: acting was more than just her dream. It was a lifelong pursuit, one she was determined to continue growing in.

But Hannah’s vision reaches far beyond her personal success. She sees the entertainment industry as a powerful platform for positive change, one that has yet to fully capture depth and diversity in the human experience. She is passionate about promoting underrepresented voices, ensuring their stories are told with authenticity and impact. She dreams of a future where powerful women lead major motion pictures, not just as actors on screen but as decisionmakers behind the scenes, shaping the narratives that define our culture.

Hannah Lanier is an embodiment of creativity, perseverance, and the desire to use art as a tool for meaningful change. “I want more powerful women on billboards leading major motion pictures as well as behind the scenes making decisions and calling the shots,” she says. “We have such amazing opportunities as artists to dig into complex stories and introduce society to a variety of people and cultures that may help to bring awareness and understanding in a new or different way.” ∎

Find Hannah on Instagram: @hannahlovelanier

GABRIELLA MONTIEL Singer, Songwriter & Official AwareNow Ambassador for Music & Arts www.awarenessties.us/gaby-montiel

Gaby Montiel has been nationally recognized as a soulful singer songwriter. As a recording artist, Gaby performs throughout southern California and has been requested to write and record songs for social advocacy organizations like AwarenessTies and Fear of Return. In April 2023, she performed as the youngest female music artist for the national Chick Singer Night Showcase at the Ventura County chapter. She recently performed for 300 art and music high school students in the Oxnard School District for the Oxnard Performing Arts Center, leading a songwriting workshop for 89 music students. She was also selected as the youngest singer songwriter for the West Coast Songwriter Association's Winter Showcase in 2024 as well as the only youth to be selected amongst 20 globally for Successfully Magazine.

Photo Credit: Dutch National Ballet / Altin Kaftira

EXCLUSIVE COLUMN BY CELESTINE RAVEN

STRONG WOMEN BEAUTIFUL MEN

A CONVERSATION WITH CONSTANTINE ALLEN

Welcome to ‘Strong Women Beautiful Men’. I am Celestine Raven, and this is a program where I talk with beautiful and interesting people about their passions, inspirations, motivations, and goals in life. Today, I have with me a very talented and handsome ballet dancer from the Dutch National Ballet, Constantine Allen. He moved here in 2018 and has now been living in the Netherlands for six years. Originally from the U.S., he has performed in numerous productions, including Swan Lake last year. Currently, he is rehearsing for Dancing Dutch. I’m eager to learn more about his life as an expat, his experience as a ballet dancer, his passions, challenges, and inspirations.

CELESTINE: You moved here six years ago—how has it been living in Amsterdam as an expat?

CONSTANTINE: It’s wonderful! The Netherlands is a very comfortable, functional place to live. It’s a great place to work and build a good life. I remind myself every day how lucky I am to be living in a country like the Netherlands.

Photo Credit: Dutch National Ballet / Altin Kaftira

“I was four years old when I first discovered dance.”

CELESTINE: What makes you feel lucky to be here? Has living in Amsterdam changed you?

CONSTANTINE: Has Amsterdam changed me? I’m not sure if the city itself has, but life over the last six years certainly has—both for better and worse, like for most people. But fundamentally, I don’t think it has changed who I am.

CELESTINE: So, what makes you feel lucky to be here?

CONSTANTINE: I live in a beautiful city, I have a great job, and I’ve made wonderful friends—both Dutch and international. Living here has given me the opportunity to focus on my work, wake up every day with a sense of purpose, and appreciate the value of that.

CELESTINE: Can you explain that a little more?

CONSTANTINE: Being a ballet dancer is incredibly physical and mentally exhausting. Having a stable and comfortable life here allows me to fully dedicate myself to my work, my friends, and my family. Waking up every day with a clear purpose is something I never want to take for granted.

CELESTINE: Would you say that Dutch National Ballet contributes to that sense of stability?

CONSTANTINE: Definitely! As a ballet dancer, you work as part of a group, but your biggest competition is yourself. You’re constantly striving to be better than you were the day before. The Dutch National Ballet fosters an atmosphere that allows you to excel while collaborating as a company.

CELESTINE: So, you’re always trying to improve?

CONSTANTINE: Absolutely. Ballet is about striving for perfection, which makes our world particularly challenging because perfection is unattainable. I don’t think I’ve ever walked off stage thinking, Wow, that was perfect. You’re always reaching for it.

CELESTINE: That sounds mentally challenging.

CONSTANTINE: It is. There have been phases where I wasn’t satisfied with my performances, but that’s when you have to remind yourself why you fell in love with the art form in the first place.

CELESTINE: Why did you fall in love with dance?

CONSTANTINE: It’s still not entirely clear to me! I was four years old when I first discovered dance. My mom took me and my sister to see Cats the Musical in Honolulu, where we were living at the time. My mom had received tickets from one of her patients, so I tagged along. Something about that performance moved me to ask my parents if I could learn how to dance. I don’t remember much about the show itself—I just remember leaving the theater, tugging on my mom’s arm, and asking, “Can I learn how to dance?”

CELESTINE: So, it wasn’t just the dancing—it was the entire theatrical experience that captivated you?

CONSTANTINE: Exactly. It was the whole atmosphere—the theater, the lights, the energy.

Photo Credit: Dutch National Ballet / Altin Kaftira

CELESTINE: And now, you’re in the spotlight yourself. Do you love or hate the attention?

CONSTANTINE: It’s a love-hate relationship. When you’re feeling great, being in the spotlight is exhilarating. But when you’re not at your best, it can be tough. You have to push through and believe in yourself in that moment.

CELESTINE: Let’s talk about Swan Lake. I saw a fragment of your performance from March 2023. There is a scene that was so delicate and precise. How do you see this moment in the ballet?

CONSTANTINE: It’s a beautiful part of the ballet. In this scene, my partner, Olga Smirnova, and I meet for the first time. I play Prince Siegfried, and she is the Swan Queen. At this point in the story, she is unsure of my character’s intentions. My role in this moment is to show her that she can trust me and that I am falling in love with her.

CELESTINE: You seem to be there to support her, to make her shine. That must be challenging.

CONSTANTINE: It is! One of the most important qualities of a male ballet dancer is ensuring his partner feels safe and supported. My job is to make her movements look effortless.

CELESTINE: And yet, ballet is incredibly physical. Do you ever fear injuries?

CONSTANTINE: Of course. I’ve had injuries—I’ve undergone surgeries on both knees. But dancers are incredibly eager to return to the stage. Once you see the light at the end of the tunnel, you forget the pain and focus on performing again.

CELESTINE: How long were you out due to injury?

CONSTANTINE: The longest was about nine weeks when I tore cartilage in my knee at 18. I was lucky—that’s been my longest time away from dance.

CELESTINE: We’ve talked about your passion, but I know a song that inspires you—Bob Dylan’s ‘Boots of Spanish Leather’. Why that song?

CONSTANTINE: It’s beautifully written. The way Dylan plays with perspective—sometimes the man speaks, sometimes the woman—it’s never clear who is saying what. That ambiguity resonates with me. The song speaks about love and longing, which I connect with, especially since I left my family at a young age.

CELESTINE: Looking ahead, what do you hope to achieve?

CONSTANTINE: I want to keep growing—jump higher, turn more, improve. Perfection is impossible, but striving for it is what keeps me going. ∎

CELESTINE RAVEN

Interviewer & TV Host www.awarenessties.us/celestine-raven

Celestine Raven is an accomplished interviewer and talk show host for Amsterdam Television in the Netherlands. With a rich academic background in political science from Amsterdam and France, Celestine has built a diverse career as a reporter, director, and journalist for Dutch television. Her passion for storytelling extends beyond journalism; she has also worked as a therapist, trainer, and coach in personal development. Celestine's dedication to empowering individuals and communities has taken her to various third- world countries, where she has spearheaded projects aimed at fostering awareness and inner strength. As the host of "Strong Women Beautiful Men," Celestine brings her unique blend of professional experience and heartfelt connection to create compelling conversations that unite and inspire.

Miles to go before we sleep…