ABI RECOVERY MAGAZINE Volume 1 Issue 4
Fall Quarterly 2017 Serving and Supporting the Brain Injury Community of Canada
In this issue: Interview with Carl Sever - Brain Injury Survivor: Finalist for the 2017 International Book Awards ...Pge 13
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“...In this ground breaking book, tbi survivor and advocate Sue Hultberg explores the lives, struggles, and issues of people with traumatic and other acquired brain injuries. She examines the origins of the acquired brain injury human and civil rights movement, and she presents an analysis of the key policy and priority agenda for people with brain injuries. She describes how individuals with brain injuries set out to engage in independent policy advocacy at the all-survivor Brain Injury Network. She also singles out some of the advocacy-related work of several dozen other brain injury survivors who work, write, or volunteer in and for the brain injury survivor community. “
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Publisher and Editor Deborah St. Jean ABI Recovery Magazine (ARM) is published quarterly eZine. Deborah is a survivor of a mild closed brain injury sustained in a car accident on June 4, 2012. As Executive Administrator of British Columbia Brain Injury Association (BCBIA) 2010 to 2014, she developed respect for survivors of brain injury and stroke. There, she published Gray Matters Quarterly newsletter, managed the brain injury hotline, and oversaw the membership. BCBIA, having merged with another Society, when Deborah left in 2014, the new board opted to closed the newsletter and hotline work Deborah started and go in other directions. In Fall 2016, she began ARM to advocate, support and enhance communication in the Brain Injury Community across the Cdn. provinces ‘coast to coast’. ARM welcomes letters and relevant, original articles for publication, and we reserve the right to edit any accepted submissions for clarity and length. Contact Deborah St. Jean for copy deadlines or
Website - Visit us online Write: 7436 Stave Lake Street, Ste. #103, Mission, BC V2V 5B9 Call: 604-788-7221 for more information.
Serving The Brain Injury Community of Canada Coast to Coast Disclaimer ARM’s Publisher, Editor and other principal parties take no responsibility for, nor do we necessarily agree with opinions contained in contributors’ articles, letters, advertising composed and contracted by second and third parties, nor do we guarantee the accuracy of such information nor medical claims contained in articles and other content submitted by outside parties. Your discretion is advised. Health & Medical Disclaimers The information herein is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained in ARM is for general information purposes only. ARM makes no representation and assumes no responsibility for the accuracy of information in this issue. ABI Recovery Magazine is designed for informational purposes only, and is not intended to serve as medical advice. The information provided within articles provided by 3rd parties should not be used for diagnosing or treating a health problem or injury of any kind. It is not a substitute for professional care. If you have or suspect you may have a medical issue, you should consult your health care provider. Immediately.
Magazine & Subscription Information ABI Recovery Magazine (ARM) is an online ezine published quarterly. A full colour magazine (8 1/2” x 11”) that addresses a wide range of topics for survivors with acquired traumatic brain injury, their families, caregivers and professionals who provide services. ARM is published four times a year starting In February each year with the ‘Winter Issue’. eSubscribe Free Click here to eSubscribe for a digital subscription to ABI Recovery Magazine. Thank you for your interest in ABI Recovery Magazine and for your support. eSUBSCRIBER CHANGE OF ADDRESS? If you have moved, please contact Deborah at: 604788-7221 or email: Deborah@abirecoverymagazine.ca Please put ‘ARM Subscriber’ in subject line of email and send us your new email address to continue receiving your issues of ABI Recovery Magazine.
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. . . e u s s I s i h In T
In the Blink of An Eye…………………..… Pg. 5 By Caren Robinson Memory, Color and the Visual Cortex of the Brain………………………….……….…… Pg. 8 By Kimberly Burnham Lessons From the Underground……....…. Pg. 10 By Mathew Hill Interview With Carl Sever: Survivor, 2017 Int’l Book Awards Finalist…………….………... Pg. 13 By JB and Carl Sever Starting From Zero: Half Way Through… Pg. 18 By Wendy Station
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In the Blink of An Eye Survivor: Caren Robinson—Blogger, Advocate, Writer, Speaker
BAM! My son spoke of the sudden unexpected deafening sound of metal crashing against metal. He described this from his young mind as us “hitting a wall” (even though there was no wall). Time seemed to be consumed on a wintry day and for a moment stood frozen as unexpected events unfolded. In the blink of an eye so much was taken from me and my whole life changed. Something that happened in an instant, a sudden, unforeseen catastrophic calamity changed literally every aspect of my life on January 4, 2014. I was involved in a head on collision with another vehicle with my then, five year old son. My seatbelt failed and I was ejected sideways from the driver side out the passenger side of the vehicle. My body apparently bent the passenger door down toward the outside. My body traversed over the top of the metal door and tore itself from the clenches of the vehicle that did not safely contain me. I would land approximately 1015 feet from the vehicle face down, on a snowy slush covered asphalt road where I lost consciousness for an unknown amount of time. I endured a Polytrauma which included numerous orthopedic injuries and a traumatic brain injury. My memory of the wreck does not exist. In fact, there are a lot of missing chunks of time missing from my life since then. I remember bits and pieces of my hospital stay. I remember enormous pain and I remember being so cold. I could not stand noise in general. I could not stand the lighting around me. Everything seemed too bright and too loud and too much all at once. I felt confused, overwhelmed, overwhelming nausea, more pain, and I was consumed by this bounding headache, dizziness, and other injuries that would keep my body in a hostage state from then on. In those early days after the accident, my family would have to answer my repetitive questions about what happened and where I was at. I would see things in one color and they were seeing
them in a different color. This only added to my confusion. I had to learn to sit up again, to stand again, to walk again. This was enormously painful and exhausting. I literally struggled to take each breath. I struggled to stay awake and exist from day to day. It was like heavy weights attached to my eyelids. In the blink of an eye I would be sucked into a deep sleep I didn’t seem to be able to escape from. I slept so deeply my family would get concerned because they could not wake me. I was having problems with my balance, with sitting, with moving in general as I could not escape the horrendous dizziness. I felt like I had just got off a spinning carnival ride with side effects that tortured my every moment. My hearing felt muffled like I had a cold. I just felt “off”. My body, though thoroughly broken, refused to give up. I refused to let the pain take my life from me. I remember not being able to control my emotions. Emotional outbursts, funny, sad, frightening, and impulsive comments consumed my persona. I would cry incessantly. I would lose weight and gain weight in large amounts. I would laugh at things that were sad. It was like it was backwards day every day for quite some time. If I could impart advice to anyone it would be to never give up. Successful rehabilitation comes from developing patience, being gentle with oneself, strong advocacy (either for yourself or the patient who needs it), researching injuries, searching for current medical trends, some great talented medical providers, a strong support system of some kind, the gift of time, and the desire to live and survive. I recently learned that I sustained hearing loss in my left ear. I have challenges with cognitive processing speeds, short term memory loss hurdles, and still experience neuro -fatigue. I have post traumatic vision syndrome, midline shift syndrome, hormonal changes, pituitary, hypothalamic, and thyroid axis changes; an unhealed nonunion fracture in my spine, multiple unhealed spinal injuries, multiple plates and screws to hold half of me together; neurogenic bladder and a deep appreciation in a different way for my life. As a consequence of the injuries I sustained, I required multiple surgeries. Thanks to the talent of some amazing Trauma Surgeons, the majority of my orthopedic injuries have been resolved. Facing the controlling beast of pain that is mercurial and is a daily feat, even now 3.5 years later. Facing the emotional roller coasters, anxiety, PTSD, fatigue, and uncertainty about the next day or even the next moment can be overwhelming at times.
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However, the ability to take a deep breath without crushing fractured bone pain is something I am grateful for every day; the ability to walk, ( even with my cane) talk, and hug with both arms is the greatest gift. I am grateful for every day I open my eyes and I am still alive and can communicate. I am even slightly grateful for the pain, because it reminds me I am still here. In a blink of an eye I seemingly lost everything. In a blink of an eye I have also been given so much more with each new day. A new day and a new opportunity. The chance to share my story with not just anyone……but with you; the chance to create a new chapter in the book of my Life. My disabilities do not define me. I keep searching for the ability in my disabilities. I keep pushing myself, to help myself succeed. I keep pushing myself to excel. I keep pushing myself to help others excel through believing in their own possibilities, their own independence - through my examples. I continue to embrace my new normals as time/healing evolves. Being aware of the stark reality that though the girl I used to know does not exist anymore – the different girl that is evolving is worth knowing, worth loving, and worth the independence she is fighting for. In a bink of an eye I endeavor to encourage others. Help One Person Excel – To Be Independent. Never give up HOPE. Never surrender. Believe in the amazing healing that can take place in the body, the brain, and in the mind. Keep moving forward. Keep celebrating each small accomplishment in each moment. Opening your eyes each day is a good start.
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Memory, Color, and the Visual Cortex of the Brain By Kimberly Burnham - Known as the Nerve Whisperer, Kimberly Burnham, PhD (Integrative Medicine) helps people with brain health issues, chronic pain, and vision improvement goals through health coaching (phone) and handson healing (craniosacral therapy, Reiki, acupressure) in her private practice in Spokane, Washington. When we remember an event, we remember certain types of sensations—the color of the car that hit us, the shape of the tree that fell in the wind storm, the feeling of salt water on our feet as we walked on the sandy beach, or the color of the shirt we were wearing when we got engaged. Medical research indicates that our perception of sensations in the moment as well as our memory of events can improve with practice. Here are two exercises that focus on color and shape recognition and improving memory: Exercise 1. Pick up a small item. Look at it. Observe the color, shape, and texture. Listen for the sound it makes when you tap on it. Notice the patterns. Does it have a taste or smell? What does it feel like? Describe in words aloud all the sensations you feel—the color as the light bounces on your eyes, the sound waves beating on your ear drums, the texture as the skin on your fingertips touch the object. A minute of paying specific attention can improve your sensations, mood, and relaxation. Exercise 2. Look outside at the tree. Notice the shape. Peer deeply into the center of one particular tree. Do you see any animals? Does the tree have needles or leaves? Does the color differ at the bottom of the tree where the tree meets the earth or as the tip top branches reach for the sky? What do your observations tell you about the type of tree or about the season of the year or about the function of that particular tree. Now choose another tree. Notice how each tree is unique and yet can be categorized by the shape of the leaves, the curve of the branches, the color of the bark. See the patterns. The second exercise is based on research that indicates that we learn more about shape recognition from looking at things like trees that are uniquely shaped and yet have a pattern that can be learned. We can learn to recognize hundreds of different kinds of trees, cars, dogs, or airplanes. Each item in the category is similar and different. Here is what the research says: "There is substantial evidence that object representations in adults are dynamically updated by learning. We had two training conditions: "categorized objects" were categorized at a subordinate level based on fine shape differences (Which type of fish is this?), whereas "control objects" were seen equally often in a task context requiring no subordinate categorization (Is this a vase or not?). After training, the object-selective cortex [brain] was
more selective for differences among categorized objects than for differences among control objects. This result indicates that the task context during training modulates the extent to swhich object selectivity is enhanced as a result of training." (Gillebert, C. R., H. P. Op de Beeck, et al. (2009). categorization enhances the neural selectivity in human object -elective "Subordinate cortex for fine shape differences." Journal of Cognitive Neuroscience 21(6): 1054-1064. https:// www.ncbi.nlm.nih.gov/pubmed/18752400). This research suggests a further exercise: Exercise 3. Pick a category of things you are interested in, cats, cars, birds, boats, rock formations or riffles. Check out a book from the library, buy a book on Amazon, or look up images online. Learn something new. Study items in the category until you can recognize 25 to 100 different items in that category. A recent study in Neuroimage noted, "Visual object perception is an important function in primates which can be fine -tuned [improved] by experience, even in adults. In sum, training to categorize or individuate objects strengthened pre -existing representations in human object-selective cortex [brain], providing a first indication that the neuroanatomical distribution of learning effects depends upon the pre-learning mapping of visual object properties." (Brants, M., J. Bulthe, et al. (2016). "How learning might strengthen existing visual object representations in human object-selective cortex." Neroimage 127: 74-85 https://www.ncbi.nlm.nih.gov/ pubmed/26658928). Another study highlights different areas of the brain which handle and distribute incoming sensory information. Visual information is typically interpreted and stored in the occipital lobe or the visual cortex. A recent study in Neuroimage looked at how and from where we retrieve visual (color and shape) information and found that colors and shapes activate not only the occipital lobe but also the temporal lobe which typically processes sound information and other sensory information. "During the study, subjects were asked to encode colored (red or green) and achromatic [without color] random shapes. At subsequent testing, subjects were presented with only achromatic shapes, which had been presented with or without colors during encoding, and were engaged in retrieval tasks of shapes and colors." Researchers found overlapping activity "in the medial temporal lobe and occipital lobe (the lingual and inferior occipital gyri) in the right hemisphere during the encoding and retrieval of meaningless shapes with color information compared with those without color information." (Ueno, A., N. Abe, et al. (2007). "Reactivation of medial temporal lobe and occipital lobe during the retrieval of color information: A positron emission tomography study." Neuroimage 34(3): 1292-1298. NeuroImage https://www.ncbi.nlm.nih.gov/ pubmed/17150375). This research indicates that if an area of the brain is damaged specific exercises can improve its function. When two or more areas of the brain function in a similar way such as the temporal lobe and occipital lobe encoding the memories
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of shape and color, function can be enhanced by exercises that ask both the injured area to work at a task and strengthening the uninjured areas with exercises. Exercise 4. Call to mind an experience or an event that happened to you yesterday. What colors, shapes, tastes, or smells can you remember? Then think of something from several years ago. What sensations of the experience do you remember? * Find Kimberly Burnham’s Books on AMAZON
Contact Kimberly - Visit www.nervewhisperer.solutions
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For more information please write us at info@thebirg.org
g n i r a C & g n i r Sha
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Lessons From the Underground By Mathew Hill - Survivor, Author I survived a serious, lifethreatening Traumatic Brain Injury (TBI) over 30 years ago. Today, when I present seminars on TBI recovery/rehabilitation or speak with local high-school students on the consequences of choice, I am always sure to have one person ask me the following question: “How long did it take you to recover?” And my answer is always the same: “What is today’s date?”… because I am still recovering today as much as in those first few foggy days in the hospital after waking from a coma. I am always sure to emphasize this point because for TBI survivors, recovery and rehabilitation are not measured in days, weeks, months or years; they are too often measured in lifetimes. A few years ago, when I first began presenting on TBI recovery and rehabilitation, I became aware of an insidious and inherent fact regarding advances in medical science: there is a generation-long gap or delay in the ability of medical science to keep people alive who otherwise would have died and the medical, social and personal acumen for understanding the challenges and hurdles those survivors will face in life after the hospital and initial rehabilitation. This acumen includes understanding and appreciating the feelings of regret, remorse and loss TBI survivors feel for the lives they once had and that are now gone. And, too often, as in my case, those lives are taken away by a TBI due to an otherwise innocent choice – in my case, it was the choice to ride a friend’s motorcycle around the block at a birthday party. Since my recovery began, one hurdle that has plagued me, and that I have heard echoed both in person and in online TBI support groups, is “How do I process or deal with the choice that brought me to my TBI?”, “How do I come to terms with my life now as a TBI survivor and no longer being the person I remember I used to be?” and “How do I deal with these changes?”
permeated through to medical/therapy acumen because medicine had just so recently figured out how to keep severe TBI survivors alive and there hadn’t been the time to gather and process information from the lives of survivors to gain a sense of what those lives would be like. The awareness of it today, though, is ever-growing, as is the importance in providing TBI survivors the resources, skills and support they need to formulate and find their own answers to these questions, as well as then integrating these answers into their own lives. And it is this final step of integration that is so crucial because it is this step of integration that facilitates and allows for the act of letting go of the past (“What Was”) and moving on in the new life as a TBI survivor (“What Is”). I also know the costs for not finding these answers. Not only from my own experiences with years of grinding through feelings of depression, loss and regret, but more so from the loss of my best high-school friend who 5 years ago took his own life a year after his TBI. Because he couldn’t come to grips with the changes that had come about in his life due to the TBI and the losses stemming from it, the unbearable contrast this new life had with the life he remembered, the person he remembered being that he no longer was, his solution was to take his own life. So I want to add my own voice to the dialogue and thereby hopefully add some discussion and insight to the growing acumen of TBI survival. I want to offer 3 key insights I have come to that were meaningful and that worked for me. I hope that they can work for you, too. The first insight was that I had to understand and accept that my therapy and rehabilitation were going to continue the remainder of my days. That until I lay on my death-bed and drew my last breath, I would be a TBI survivor still be recovering from my TBI. This is a truth for me now and always will be; it is part and parcel with my life and who I now am. The sooner I came to accept this truth, the sooner I could move on with my life and discovering who I had become from the TBI, resulting in who I now am. The second insight was recognizing the need for “letting go”. That I had to let go of the hope and false belief that one day there would be a “CLICK!” and I would begin to feel a familiar solid sense of being the person I remembered once being. Or,
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that if I focused hard enough on the memories of who I once was and remembered being, that I could somehow, CLICK!, recreate being that person. But thoughts like this are akin to what I call “What Ifs?” and they are the siren songs that lead us down the paths of imagining thoughts like, “What if I focus really hard on the memory of who I remember being?”, or “What if I hadn’t made the choice to ride the motorcycle that day?”, or even “What if I had just arrived at the party an hour later?” Going down the path of asking “What Ifs?” brings nothing but madness and despair because they are ABSOLUTELY POWERLESS to change the reality of how things are and of who I now am – a TBI survivor. There is no “CLICK!” to look forward to and no hope that I could possibly have will ever be strong enough to undo the past. I need to accept the present, the NOW I find myself in, and get to work dealing with “What Is”. And “What Is” is that I had become and am, a TBI survivor. There were some things that not only I needed to recognize and accept about myself but, also, that you need to know and accept about me and other TBI survivors*: Just because my brain doesn’t work as well as it used to doesn’t mean that talking to me like a child is going to help. It is condescending and hurtful. I may seem “rigid” in my tasks and daily activities. This is because I am retraining my brain on how to do things and I need this initial consistency to build on. If I seem “stuck” on something, my brain may be challenged in processing information. Coaching me, suggesting other options or asking how you can help me to figure it out is better than getting frustrated with me and doing it for me or critiquing me for being “dumb”. Sometimes, I work better on my own and at my own speed. This gives me practice for learning how to figure things out on my own. Please give me this time. I may repeat actions like I have OCD. I likely don’t, but I may be having trouble encoding or registering my actions enough to remember doing them. If I have to check that the door is locked 3 times, who cares? At least we know the door is locked and I have encoded a new memory pathway for remembering that I have locked the door. If I seem emotionally sensitive and even unstable sometimes, it could also be emotional ‘liability’ (involuntary emotional displays of mood that are overly frequent and excessive) or fatigue from the extreme cognitive and emotional effort it now takes to accomplish what used to be simple or automatic tasks. Exercising a brain is no different than exercising muscles;
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they get tired. I need people in my life who have my back. I need cheerleaders. Don’t be negative or critical of my failures, but, instead, help me to celebrate my successes, regardless how small and insignificant they may seem to you. Please believe me when I tell you that the smallest success for me can bring a world of hope and optimism. I need a lot more time than I used to in order to get things done. I’m not being lazy; it just takes my brain longer now. Please, be patient with me. My stamina fluctuates and I may tire easily. Cognition and thinking are energy-demanding and harder for me than they are for you. Again, be patient with me. Please. TBI recovery and rehabilitation take a long time. More than years, it is likely a lifetime. I may resist social situations because crowds are hard for me to deal with; they can be loud, confusing and over-stimulating. Having a supporting friend as a guide and back me up can help me to get used to social settings again. If more than one person is talking at the same time, I am likely to get overloaded and lose track of the conversation. I may even say something out of line or completely off-topic. I could use a hand to help me stay on track. If I say that I need to take a break, I mean I need to take a break RIGHT NOW!!! Sometimes, all I need is a few minutes alone or away from the noise to regain myself so I can rejoin the dynamic. My “behaviour problems” are likely signs of an inability to deal with specific situations – both externally, as well as inside me (like being attracted to another person). Helping me to find a way to properly handle the situation, rather than condemning me, gives me a behaviour tool for the next time I run into that same situation or issue. Please give me the time I need to remember my words. Help me be patient with my memory so I can form new and strong good neural memory pathways, not bad ones born of stress, anxiety and fear of punishment or critique. Lastly, and most important of all, the best gift you can give me is patience, patience, and then a little bit more patience. Because, I promise you, I am doing the best I can. Please, believe me when I tell you, “I am doing the best I can”. The third fundamental insight that I arrived at was that I can’t regret the choices I made that resulted in my TBI. I can’t regret the choices because I can’t change them and I can’t undo them; regretting the past only keeps me from moving forward. Regretting prevents me from letting go and moving forward because it keeps me rooted in an unresolved
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past. A past full of….regrets. I had to recognize and accept that the only direction available to me was to move forward and the only thing that could stand in my way was me. But I also had to recognize, as every TBI survivor must recognize, as well as friends and family of TBI survivors, that also meant undertaking the long and sometimes painful process of finding and appreciating the new life as a TBI survivor. Discovering and building on the strengths and benefits that TBI survival brings to the lives of survivors. And, yes, often this means actively choosing and fashioning those strengths, yet they are strengths in life, nonetheless. And I know that arriving at these insights and strengths is no easy task and I do not mean to make light of the difficulty, nor want to make it sound simple or academic. I also recognize that there is no instruction manual to go with it. Gods, how I used to wish there was, though! But there isn’t. And, believe me when I say, that if I could somehow make it easy for ALL survivors to come to these insights and successfully integrate their answers into their lives, I would do it. So I could bring ease and relief to other TBI survivors. But then I would be denying TBI survivors the opportunity for growth in finding and developing their own strengths and in finding their own reasons for moving forward and living your lives. You will excuse me, again, for relying on the words of Ms. Ellen Smith in concluding this article: “Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stores about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.” Please, Don’t Give Up! (* Courtesy of Ms. Ellen Smith, “What Brain Injury Survivors Want You to Know”)
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Interview With Carl Sever: Survivor, 2017 Int’l Book Awards Finalist Meet 1st Time Author, and ABI Survivor - Carl Sever. Introduction: Carl Sever began writing fiction in part because of his interest in the 1930’s Dust Bowl, hobo culture and lore, and small-town mid-western life, especially in areas dominated by the Roman Catholic Church. His writing has also been an important part of recovery from a traumatic brain injury he suffered in a car accident in 1990. Carl has been a teacher, a journalist, and nature photographer. He has also been a businessman and co-owner of an exclusive wholesale photo lab. He’s an avid outdoorsman, passionate flyfisherman, and adventurer who has explored the mountains of Colorado, Montana, Canada, and Alaska. His travels have taken him to Costa Rica and Panama, reinforcing his study of Spanish as a second language. He’s a lifelong learner, with studies ranging from screenwriting and sculpture to nature photography. Alphonse is his first novel. In this interview, his writing coach and editor Judy Fort Brenneman and Carl talk about his injury and the role writing played (and continues to play) in his recovery. ~
Interview with first-time author, finalist, Carl Sever: JB: Carl, first tell me a little about how you ended up with a brain injury. CS: About 30 years ago, when I was in my early forties, I was in the throws of the world’s worst mid-life crisis. At the time, I had owned a wholesale photo lab for ten years. It was successful and we were making a lot of money; I should have been on top of the world. My business partner did everything—all I had to do was stay in the darkroom and print photos. Maybe it was a function of 10 years of sensory deprivation, but I developed into kind of an odd fellow. I’m a quiet person anyway, and the years in the darkroom made me even more reticent around people. At the end of that 10 years, I had no idea what I wanted to do, but I knew I needed to get out of the darkroom. I was successful, but something wasn't right. I knew photography, how to crop and alter a picture, the aesthetics of a picture, visual stuff. After a decade of printing for some of the most wonderful nature photographers in America and abroad, you can't help but learn. So I had all this knowledge, plus this mid-life anxiety that I needed to do more. I also have two degrees in English, and I love literature and writing. So I decided, I'll combine these two things, the literature and this visual sense from my photography work. I'll go to UCLA and learn how to write screenplays. JB: So you left Colorado for California? CS: And brought my mid-life crisis with me. I was at UCLA for four months, took two courses, and didn't do very well. I was in too much of a hurry. I had a bit of arrogance,
thought I had it all figured out already. In one course, you had to adhere to a formula, a 120-page format with specific things happening by certain pages. I was so impatient, I outlined my entire story idea and started writing the dialog and action. By the third or fourth week, I had my first screenplay in the can, convinced I was ready to market this baby. Of course it was horrible. My professor just shook his head and said, "You've got to slow down and listen," which I wasn't willing to do. My other course wasn't any better, and I returned to Colorado at the end of the semester. JB: Back to the darkroom? CS: No—I'd quit my job, sold my business to my partner, and I was thoroughly disillusioned. I realized that my goal of writing a screenplay was ill-conceived. I'd been clutching at straws because I had no clue what to do with my life. I arrived back in Fort Collins, with no job, in the midst of a divorce, losing my friends, losing my car, my house, my children. I fled to Boulder, Colorado, thinking that at least a change in city would help, but it didn't. For the next three years, I was basically an unemployed bum, living off the proceeds from selling my business, and going nowhere with screenwriting or anything else. That third year, I was back in Fort Collins at Christmastime to visit my children. On the morning of Christmas Eve, I drove out to my old photo lab to visit with the janitor. We'd been good friends and had mostly stayed in touch. But he wasn't there; no one was. I left, my thoughts swirling— disappointment that I wouldn't be able to see my friend, since I was only in town that day and Christmas Day, that it's Christmas Eve and my life is a mess, as well as thinking about more mundane things, like the promise I made to my son that I'd move his futon and wondering how I would get it into the back of my Honda Accord. I was feeling miserable and depressed—I'd always hated Christmas anyway, especially since my divorce. I was ruminating about all these things, all this miserable garbage going through my head, when it happened. At the corner of Willox Lane and College Avenue, at 10:35 in the morning on December 24, a U.S. West utility truck ran the light and slammed into the passenger-side of my car. I remember they cut me out of the car, but not much else. The first real memory I have after that is from Valentine's Day. My daughter Stephanie was wearing a cute little Valentine's outfit. I was sitting on the couch at my exwife's house—my ex, thank God, babysat me through my early recovery—and Stephanie came up to me, gave me some brochures from Honda, and asked, "Which car do you want to buy?" JB: What was your initial recovery like? What kinds of things did you do? CS: For the first several years, a lot of my time was taken up with a lawsuit, visiting attorneys, that kind of thing, with my brother's help. And a lot of the time after I woke up was spent going back and forth to Denver to see neurologists, and to Boulder for different kinds of rehab. Those two things dominated my life for a long time, but they don't fill
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a whole life. JB: So you still had to figure out what you wanted to do with your life? CS: Yes. Five years later, I finally won the lawsuit. Between that and the money remaining from my business sale, I was okay financially. I have to thank my brother for that. He was appointed as my conservator, and he's managed my money for me ever since. Otherwise, I'd be totally broke, because at the time, I had no brain—I would have squandered the money. JB: A lot of people would just be happy they didn't have to work. CS: That was sort of me, for a while. I was seeing a neurologist regularly, and he said, "Carl, you're a hermit. Something's wrong with you." Well, we both knew that, but what he meant was that I wasn't living the way I should be living, despite the accident. He pointed this out after I told him I'd gone fishing up the Poudre Canyon for 32 days in a row, in the middle of winter, by myself. I was totally incapable of doing anything social. He suggested I find some outlet where I could go regularly, often enough that people would recognize me, and maybe strike up a conversation. I took him at his word and began going to a nearby bar. It worked, in a way; I met people who are still close friends, including my life's companion, there. But I ended up drinking too much and too often, for five years. My brother and daughter finally decided enough was enough, and they got me into rehab for alcohol. After rehab, I lived with my brother for a month, and then I went into assisted living. JB: Was that because of the brain injury? CS: I kept asking the doctors what was wrong with me, recovering from my closed head injury, and one doctor finally said that this was a permanent injury from alcohol, called Korsakoff syndrome. I didn't agree. I said, "No, this is all in my mind." But because of that diagnosis, the state rescinded my driver's license. So now I'm 57 years old, I'm living in an old folks home, staying in my room because I don't like the feel of going upstairs and having dinner with people who were 80 - 90-years old, and I no longer have my own home, I have a bunch of money I can't spend, I can't drive a car. My self-confidence was at its lowest ebb. JB: How did you get released from assisted care to live on your own again? CS: I told my daughter that I was angry they'd taken away my license. She said, "They can't do that to you, Dad," and she took me driving. She basically suspended her own life for a year to help me. Almost every week, I would go to the neurologist or other therapy, where they had a separate section that helped people with their motor skills and their memory skills, things that might help them get their driver's license. They'd give me these tests, and I'd fail miserably. I was trying hard, but I just couldn't do the simple things. I knew literature and math, all kinds of stuff, but I could not remember five things in a row that were said to me. I couldn't remember sequences. I kept at it, and ultimately, I did pass and was able to get my driver's license again. Not only that, but the neurologist found no evidence of Korsakoff
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syndrome. JB: So, that hard work paid off for you. CS: Exactly a year after going into assisted care, I was allowed to leave assisted care. I found a place to live, a nice duplex, and it was there that I finally tried to figure out what I wanted to do with my life. Because I had a lot of life left. That's when I came on this idea of actually seriously writing. JB: To think about what you wanted to do with your life, and decide on the writing—it sounds like you weren't just finally healing enough from the injury itself, but you were also starting to come out of some of the worst of the depression you'd had as a result of the injury. Is that true? CS: It is. Because even if someone thinks it's nearsighted or ill-conceived, any time you give someone a direction, it helps. Any time you have a goal, no matter how far-fetched or how small, it helps. And that’s how I gradually came out of my funk, by using writing. And I used it a lot because I wrote a lot and I learned a lot. JB: I think that’s something that we often forget. It’s not, “I’ve got to have a goal, and the goal is that I’m going to write a novel.” No. It’s "have a goal." The goal is to get up and write every day. CS: And it can be just a goal for the day. JB: Yes, absolutely. What did that look like, in your day-to-day life? CS: I treated it like a regular job. I don't work well in the early morning, so I set up a time later in the day, and I wrote every day, or almost every day. JB: And you worked on it— CS: I had in mind to write an opus, so after a couple of years, I had a 960-page manuscript. And then another eight years, to pull out the middle section and turn it into the novel that was published this year, Alphonse. JB: You wrote every day all that time? CS: No, no—I'd work on it for six months, then take a break for several months, then get back to it. But I still worked on it during those "nonwriting" times, too. There were things I needed to learn, about the topic, or about writing. and editing. And there times when my health got in the way, though I discovered that writing helped me through those times, too. And when I had done enough research or whatever, I'd pull out the manuscript and get back to it. JB: It sounds like a kind of balancing act. CS: Writing, and the other research and learning I did in between the long writing stretches, gave me enough—and still gives me enough—structure, but not too much. Too much gets in the way, and I rebel against myself. Too little, and I feel lost, and I'm likely to sink into depression. When I've got an idea for the story I want to pursue, and I have that goal in mind, that's the balance that works. JB: Now that your book has been published, and you and it both appear to be doing well, is there anything you'd like to add, anything you've taken away from this long—and ongoing—recovery from your brain injury? CS: You hear stories about people who've suffered one tragedy after another, and when they resurfaced, their whole life had changed. Something clicked inside them, and they came through as a significantly different person. That was
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exactly me - I guess there's nothing like a little disaster to sort things out. Before my accident, I was obsessed with growing a business and making as much money as I could. I'd pushed aside the fact that I was a father, a husband, and had many friends who I ignored for years. In hindsight, I think I wasn't a very nice man - not a bad man, but one who ignored the truly important stuff of life. My "brain wreck" reordered my entire life. Now, my children, though adults, center my life and help keep me focused on those things that should have been important all along. I no longer gauge success by my bank account. I'm still goal-oriented, but my goals include writing, whether I publish again or not. Maybe the best part after my recovery is the simplest, that I'm no longer in a hurry. I take the time to live my life the way I'd always intended. *
A simply fabulous read!
To find out more information or to contact Carl Sever, visit his Facebook Page
“Finalist for the 2017 International Book Awards�
Alphonse: A novel - Purchase on Amazon
Rehab: The Road to Recovery
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Wendy Station - Survivor, Founder and President Encephalitis Global “I survived encephalitis, an acquired brain injury, in April of 1999. I am honoured to share my story, my thoughts and reflections here in the ABI Recovery Magazine, to allow survivors and caregivers of brain injury to know that they are NOT alone.” Part I: On a sunny April morning back in 1999, I sat down at my office desk in North Vancouver for the very last time. I had been trying to shake a wee headache all morning… finally, I told my supervisor that I’d have to go home. That’s the last thing I remember for the next four weeks. I don’t recall driving home. I don’t recall being miserable to my family in the following days. And, I don’t recall my own husband taking me to our local hospital’s emergency room, and telling them, “something isn’t right about Wendy.” The staff at the emergency room desk replied, “She must have the flu. Take her home.” As my husband stood his ground and continued to explain my issues, another medical professional standing nearby suggested that I may be suffering from encephalitis… inflammation of the brain. I was whisked into treatment, and my life was saved. Without this swift treatment, the type of encephalitis I had is progressive and has a 70% fatality rate. Unfortunately, while this amazing doctor was saving my life, my family was struggling to learn more about encephalitis. Our local library, the internet, asking friends… no one seemed to really be able to answer the question, “What is encephalitis?” Encephalitis is swelling (inflammation) of the brain. Swelling which causes permanent damage and destruction. You may know of the word meningitis… which is swelling to the lining of the brain. Encephalitis happens one-seventh as often… and it touches the more inner area of the brain. Encephalitis is indiscriminate showing no respect for age, sex, nationality or culture. Weeks and months after encephalitis touches, its survivors and loved ones must learn the most difficult . In North America, Encephalitis types generally fall into one of the following groupings:
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Arboviruses – The most common types of encephalitis are spread by mosquitoes and ticks and typically have a sudden onset of symptoms; Enteroviruses – Viruses that enter the body through the gastrointestinal tract; Herpes viruses – Viruses that cause an infection and then lie dormant. In some cases, the virus reactivates, causing encephalitis: Autoimmune encephalopathy (also sometimes called “autoimmune encephalitis”) Other rare causes – Childhood viral diseases, drug reactions and bacterial infections. Mosquito-borne encephalitis (such as West Nile and Eastern Equine) is often mentioned in the media. Over and over again, the public is told of how few fatalities there are after the touch of West Nile. Unfortunately, the public has little knowledge or interest in encephalitis survivors - people who are struggling to face life itself, after surviving this horrible disease. Consider memory loss, where a fiancée is heartbroken when her intended really does not remember her, or the promise that they shared. And there is a man's anger with himself, when his spouse is now the solo family bread-winner. Children who now face their education with frustration, as their peers move ahead and leave them behind. Or even a farmer, who can no longer return to his fields. Just as important, is the impact of a brain injury on those associated with the patient. Family and friends must now have a similar patience. Patience in dealing with this loved one who looks great, but acts so very differently. Personally, in my early days post-encephalitis I lost all emotions. It was as if love and compassion were non-essential services within my struggling brain. I had lost the ability to care. After three weeks in hospital, my husband brought me home for two hours to enjoy dinner with my family. I sat, stared at the food, ate a few bites, then said to my husband, “can you please take me back now?” To this day I cannot
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After 4 weeks in hospital, I was permitted to return home with the understanding that I would be monitored 24/7. My parents were babysitting me as my husband went to work and our children went to school. It seems that I needed to re-learn even the most basic skills. I started that learning on the first morning home by seeking a spoon to stir my coffee. I was searching through a pile of newspapers, asking the dog, and checking in the freezer. As I was heading outdoors in the rain to search the backyard for a spoon, my mother had to show me where the spoons are kept -- in my own kitchen drawer. Later that same day, I went to sit and watch television with my father. On the table in front of him, I found the most remarkable thing. It was a small thin rectangular box. It had numbered buttons on it, and when I pushed the wee buttons a small red light would sparkle. I love gadgets, and said, “Dad, this looks interesting! What does it do?” He replied, “Wendy that is your television’s remote control. It changes the channels.” This was another piece of knowledge which had to be re-learned. My own neurological evaluation stated in part, “...permanent cognitive dysfunction in the form of decreased short-term memory, decreased attention span, decreased concentration abilities. Mrs. Station is not able to
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work, and will probably never be able to work at a job either part time or full time permanently, due to these ongoing cognitive deficits that have left her permanently disabled.” I am one of the lucky ones, having regained reasonable ability to function. In future editions of the ABI Recovery Magazine, I would like to share more about my life experiences. Life after my acquired brain injury has given me ample opportunity to be courageous in living my life to the best of my ability. In the process of meeting life's challenges, I have learned and continue to learn how to meet my fears and move beyond them. It’s certainly a road less travelled… but it’s a good road nevertheless. * ~ Watch for Part 2 in the Winter Issue in January 2018 www.encephalitis.ca www.encephalitisglobal.org
ABI Recovery Magazine To advertise with ARM, email to: Advertise@abirecoverymagazine.ca
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Be Your Brainy Best! Do you have acquired brain injury symptoms? Do you have life stressors that impact your daily functioning? Are you interested in improving your cognitive skills? Crystal Willms - Certified Power Coach® Reiki Master Practitioner, Saskatoon, Sask. ——————————————————————————————————————————————————————————————————————
Coaching and consultation for brain injury management
Brain Gym® strategies for improved cognitive wellness, athletic and academic skills Reiki sessions to promote physical healing, relaxation and improved mental clarity Whole-life coaching to assist with improved skills in problem-solving, planning and follow-through (for individuals with or without injuries)
TheCrystalFactor.com crystal@headwaycoachingintl.com
Province & Territories: Association Listings - Links
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Alberta
British Columbia
First Nations BI Services
Manitoba
BI Information, Events and Resource Access by Province
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New Foundland & Labrador
Northwest Territories
Nova Scotia
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Province & Territories: Association Listings - Links
New Brunswick
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BI Information, Events and Resource Access by Province
Province & Territories: Association Listings - Links
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Nunavet
Prince Edward Island
Quebec
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Yukon BI Information, Events and Resource Access by Prov-
Conference and Community News
December Brain Injury Assoc. Sudbury & District 2750 Bancroft Drive, Sudbury, ON
~ Holiday Gala for ABI Survivors ~ Thursday, December 7, 2017 @ 5:00 - 9:00 pm
705-670-0200
info@biasd.ca
For many years, BIASD has partnered with March of Dimes Canada to host a holiday gala or ABI survivors, their families, friends and advocates. What started off as a small get together has grown in to the most anticipated event of the year. ‘YOUR DONATIONS WELCOME’
February TORONTO REHAB’S 2018 TRAUMATIC BRAIN INJURY CONFERENCE Hosting: University Health Network
February 2, 2018 Beanfield Centre, 100 Princes’ Blvd. For more information: 416-597-3422 ext.3448 eMail Us Registration (Website) Abstracts Submission Deadline: November 27th, 2017
Submit events, news listings to: Deborah@abirecoverymagazine.ca
ABI Recovery Magazine wishes you a very Safe and Happy New Year 2018