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BIAA - Maine

Our Stories...

Daryne Rockett  October 2017



Cashew-crusted chicken was searing in a skillet on the stovetop while tomato sauce simmered on the back burner and a pan of brownies baked in the oven. I had waited longer than recommended to turn on the exhaust fan, because eleven months into my recovery from a so-called mild TBI, I was acutely aware of the toll background noise took on my ability to concentrate. My gamble did not pay off in this case, as the smoke alarm started going off at the same moment as the timer on the brownies, just as I stood bent over the hot oven with the baking pan in my hand.

My recovering brain stalled in the bedlam, and I was frozen in space. I could feel the heat starting to penetrate the protective oven mitt, but I could not initiate the next action in the sequence. I was aware that there were important matters to tend to, and my mind seemed suspended outside of my body as it observed the scene.

I leaned on a decade of meditation experience and let go of my effort to control what was happening, relaxing into the experience and just breathing. I asked myself what needed to happen first, and when the answer came to put down the brownies, the brakes finally released and I was once again able to move. Step-by-step, I placed the pan on the counter, closed the oven door, turned off the timer and then all of the burners, waved a towel under the alarm to silence it, and sat on the couch quietly resting until my husband came home and could finish cooking our dinner.

Prior to my injury, I had been able to balance a multitude of highly complex activities in my life as a clinical social worker, professional musician, amateur photographer, and family member. I worked as a readjustment counselor at the Bangor Vet Center, providing mental health treatment to combat veterans, military sexual trauma survivors, and the immediate family members of those killed on active duty. Each time I conducted a new intake with a veteran, I was required to ask a series of questions specifically designed to help prevent TBI from falling through the cracks in the system of care. I had received specific training to allow me to respond to TBI survivors with empathy and understanding, and make referrals for further evaluation when needed. Had it not been for the years spent repeating those screening questions with clients, I likely would have missed the important signs that indicated my own concussion warranted special care and consideration.

It was during the first roller derby practice of 2014 that the concussion occurred. We were practicing an offensive drill, and I was the inside blocker on the defense as my coach rolled in for a shoulder block to create a hole for her jammer. She is a powerful player with pointy shoulders, and I didn’t want her to hit me. I slowed my pace on the misguided belief that she would miss the hit and her momentum would take her out of bounds in front of me. Instead, the action of my sudden deceleration caused my head to drop, and rather than hit my shoulder, she struck the side of my jaw. Everything happened so quickly that she never even knew she had hit my head and sent my brain bouncing against the inside of my skull.

I never lost consciousness, though there was a brief moment when everything went gray. My teammates were resetting to repeat the drill when I said, “Hang on, I’m not okay.” Someone pointed out that I should sit down, and since I had skates on my feet, this seemed like a very good idea. A nurse on our team conducted a cognitive screening that I aced up until the moment I had to repeat three numbers in the opposite order they were delivered. My husband was called to bring me to the hospital where I was diagnosed with a mild concussion. I insisted he stop at the fabric store on our way to pick up my car because I had a coupon that was about to expire. The first tangible sign of difficulty was that I left my cell phone in the store that evening.

Despite my training in TBI, despite excellent early interventions from my primary care doctor who insisted on complete brain rest, and despite vestibular therapy, cranial-sacral therapy, and speech therapy, it was nearly a year before I came to fully recognize that I had a serious injury. Each time that I attempted to reintroduce moderate amounts of activity, play music, or return to work, I would inevitably encounter problems and have to resume my rest. With every other challenge in my life to date, whether physical or mental, perseverance had been the key to success. Always before, it had been important to push through pain, fatigue, or hindrance to emerge stronger on the other side. It wasn’t until I sat amid the smoking ruins of that chicken dinner that I started to understand that I was going to have to conquer this foe by retreating to a certain type of stillness. The amazing brain that had figured out the solution to every other problem in my adult life was being sidelined, and without it I was like a sloop without a sail.

I have become a world champion relaxer over the past four years. After switching to an autoimmune Paleo diet, my healing trajectory took a sharp turn upward and I flew past milestones that had previously looked like insurmountable obstacles. Though I still become easily fatigued and can lose words, patience, concentration, and temper, I have been able to return to full-time work at the Vet Center where I am now a certified brain injury specialist and have a case-load brimming with TBI survivors. Just two weeks ago, I gave my first full-length solo harp and storytelling performance since my injury to a full house. I slept for three days afterward, but goodness it felt wonderful to be back.

Samantha Horn Olsen  September 2017



A sunny Friday in February was the day my energy slammed back into town. Sitting at breakfast at the Augusta House of Pancakes, I felt the familiar vibration of my body ready to move and explore. It had been that way for years now, except for the past months while I had a concussion.  In November, a friendly basketball game resulted in an accidental sharp elbow between my eyes, breaking my nose, snapping my head back, and causing a mild traumatic brain injury. I spent months seeking care that was effective, and I had to rely on my family for virtually everything, including help researching treatment options.

For those few months, my brain was so offended at my carelessness that it decided to play the cruel joke of making me move at half-speed and sapping my energy, leaving me no choice but to nap like a toddler and avoid light, noise, sound, screens, reading: my connections to the outside world. My brain had also gone on strike and refused to reliably remember the simplest of recent events or to formulate the basic outlines of a plan for getting anything done.

My friend Patrick, sitting across the booth from me on that February morning, didn’t let on whether he noticed my sudden flood of nervous energy, but I suppose it would have been hard to miss. Even as I then took a walk, went to the dentist, and drove home, the energy stayed with me—moving in and around me like it had a life of its own. The contrast from the months of enforced torpor was stark. But even though I welcomed this new electric energy coursing through my body and the air around me, I noticed that there was something missing: the connection to ground—the centeredness that was an important part of my being, and which I had cultivated as I healed, was elusive. I could concentrate and call it forward to me now and then, but it kept lagging behind and wouldn’t catch up and stay with me as I zinged out ahead.

Later in the day, I stood in my kitchen, thinking about the fact that I was now home, and talking to my older son about school and other current events. As we spoke, I realized that I couldn’t see a path forward and I couldn’t see a path backward. There was the weekend ahead, and because of my custody arrangements, I needed to go spend it elsewhere. There were several options, quiet events, friends to see, my mother to visit. Ordinarily it would have been but a moment’s work for my brain to order it chronologically, prioritize it, consider logistics, and choose the options that maximized efficiency and provided optimal chance for fun and productivity. Because that’s what my brain and I did—together—all the time—automatically. You need a plan? See Samantha. She’ll have one for you in a jiffy.

But in that moment, my brain had not seen fit to provide cognitive services at the same rate it was returning my physical energy. So there I was, standing, totally bewildered, in the middle of my kitchen, staring into space. Truly, I had not even recognized the nature of my dilemma. All I knew was that I couldn’t seem to go forward with a plan, or back up and start over. It was my son who then observed that my energy had returned, but I did not have the brain power to know what to do with it. As he said it, I knew he was exactly right.

My boys both have brains that are not naturally organized. Their talents lie in being creative, expressive, insightful, compassionate, and smart. Prioritizing, structure, and memory for tasks did not come with that wonderful package. They both have challenges with attention. In that moment, standing in the kitchen, I suddenly understood. Emotionally understood, not just intellectually understood, what it can feel like to have all of the pieces of the puzzle floating in your head, as if they were literally whizzing through the air, circling you Harry Potter- style, but stubbornly refusing to settle down and align themselves into the picture that you know is there somewhere. It was hopeless to just try harder to make them settle, and my temptation was to throw up my hands and say, “forget it, who needs to make a puzzle anyway, I’ll just have a snack instead.” How tempting it would be to let someone with more organizational skill take care of those “details” and let me float through my existence doing what occurred to me in the moment and what felt intuitively good. Ahhh…now that would be a relief.

Even a few months later, as my cognitive abilities were slowly catching up with my physical recovery, I felt the opposite forces of rapid action and centered thought pulling at me, as if they existed separately in my body.  I had not re-learned how to integrate them into a confident but compassionate and thoughtful self. I was having a Jekyll and Hyde experience of wanting to march off in whatever direction occurred to me, but recognizing the folly. To have had the experience of being a natural organizer and then be plunged into an existence where I had to take each moment, each day on its own and for its own merit was a shocking change. 

Since that time, my recovery has been nearly complete. I was fortunate that a clinical neuropsychologist who specializes in concussions discovered a hidden visual problem that was holding back my recovery. After a month with prism glasses, I was making much more rapid progress, and her guidance, as well as good physical therapy, craniosacral therapy, and my dedication to a structured, supervised exercise program, got me slowly back to work and physical activity. Fortunately, my employer and my staff were understanding and very supportive. In March I started back part-time, in April I was full time limited-duty, and in May I was allowed to supervise again. From there I continued to rebuild my capacities, both at work and with exercise.  In August I climbed Mount Madison—not as fast as I could before, but I am working on it.

Reflecting on the last 10 months, the effects that have really lasted are not the brain damage.  Sure, my short-term memory is a little lacking, and sometimes I don’t feel quite as sharp as I used to, but I’m really pretty functional and I don’t spend time wishing for perfection in those areas. What has lasted is what I learned. Cognitive function helps make us unique, and we all have different capacities—losing executive functions can sometimes reveal creative talents.  Being understanding of others with different cognitive capacities is critical; helping them obtain excellent care when they cannot research and advocate for themselves is a beautiful gift. 

Primary care providers often are not well-informed about the latest concussion information; if an adult is not recovering well within a month, help them find an appropriate specialist. If you meet someone who does not take traumatic brain injury seriously, tell them a good story or two that will stick with them and make them think twice. And my most important lesson is gratitude—for my cognitive capacity, for my family that helped me, for the opportunity to learn about fascinating science, and for my new understanding of my boys’ experiences so I can be a better mom.

Paula Sparks  August 2017

August 29, 2016, was my "rebirth-day." It was the end of an old decade and the beginning of a new one. I have moved on—not as the old person I used to be, not rid of all that had occurred in the past 10 years, but as a new person living a new reality. Living with what I do and don’t have now that I had back then.

On August 19, 2006, I was a 53-year-old wife, mother of three, and grandmother of one, hosting the wedding of our daughter at home in my husband’s beautiful gardens. The day before had been my husband David and my 33rd anniversary. I was also a Program Specialist for Girl Scouts, running in-school, after-school and summer programs for girls living in public housing in Portland. It was a beautiful, fun day, one I will always remember. Little did I know that my life was in for a very big change.

Ten days later, on August 29, I received a call from my primary care doctor, telling me to go immediately to the emergency room. I had been having headaches, and after ruling out migraines, blood tests had been taken. My doctor had received the results of the blood work done the week before and believed I had meningitis.

Aside from the headaches, I had been experiencing a slight limp and the sensation that I was drooling on my left side, along with a dripping sound in my right ear for a few months, but had put it all off to being busy getting ready for the wedding.

When I arrived at the ER with a friend, a room was waiting for me. As I waited to see the Dr, I suddenly became violently ill and found myself leaning to one side. From then on, things became very confusing. I was admitted, and while in the bathroom suffered a seizure and collapsed. I remember the seizure beginning, barely remember being transferred to another hospital two days later, and have little to no memories of the next two weeks. I do know this…I was very sick. I had suffered a stroke as the result of a Venous Sinus Thrombosis—a very unusual type of stroke caused by a genetic clotting disorder (unknown to me) that was exacerbated by being on birth control and taking Celebrex.

The swelling in my head was threatening to kill me, and my family and friends were called in to say goodbye. Thankfully for me, I was totally unaware of all this. My left side was paralyzed. I had difficulty speaking (which later was discovered had been caused by my biting through my tongue during the seizure). Miraculously, I had a wonderful neurologist who somehow brought me through all of this, and I slowly began to heal.

After three weeks in the hospital, I was released for two more weeks of therapy at New England Rehabilitation Hospital, where I learned how to walk and care for myself with my left-sided weakness. I walked out of there with a cane, after going in on a stretcher. Another miracle.

Four months after my stroke, I returned to work. Aside from still using the cane and being tired, I thought I had recovered. With a lot of help, and because of the nature of my work, I was able to manage. For a while. My father had suffered a stroke at the age of 48, had aphasia, wore a leg brace, walked with a cane, and had no use of his right hand, so I thought I "knew" stroke. I could walk and talk, and had only slight residual left-sided weakness, so I thought all was well. But there were so many things I didn’t know about stroke.

I didn’t know about short-term memory loss, fatigue, sensitivities to sound, light, and smell, sensory overload, and so much more. I didn’t really "get" that I had a brain injury. A year and a half after my stroke, I suffered a panic attack, and realized that something still wasn’t "right." I couldn’t keep up my work and had to leave work. Then I realized that no matter how good my doctors were, they didn’t have all the answers, and I began the search for a Brain Injury Support group. I was lucky, and found one close by.

That support group changed my life. I learned strategies for dealing with challenges I didn’t even know I had. Although I can no longer work, I have returned to being able to do most of the things I love—sewing, crafting, decorating our home, being with my grandkids (3 now!), taking classes to learn new skills, shopping and hosting parties for friends and family, and traveling, both alone and with others. I have taken up doing art in ways I never imagined, attend concerts (yes—with ear plugs!) and attend the theater, and have been turned on to genealogy research.

Today, I am a member of Brain Injury Voices, a group of BI survivors who educate, advocate, and support those with or working with BI. I assist with and sometimes teach art classes for others with BI. I speak at workshops and conferences, to survivors, support members, and professionals. And, my absolute favorite—I plan for and facilitate the BI support group “WINGS” meetings, complete with hands on activities and door prizes!

I have been truly blessed. I have friends and family who have stood by me, and now my circle of friends is larger with the addition of my BI friends. I would never have met any of these people if it hadn’t been for my stroke, and I am pleased every day to be able to say I know them. I have put behind me what I used to be, and am living a "re-purposed" life, and for the most part, loving it!

Rorie Lee July 2017

 
Rorie with her service dog, Ziva.
photo by Ross Goldberg.

In 2003, Rorie Lee and her husband Ross Goldberg realized their dream of moving to Maine and buying a house in Scarborough as Rorie started a position as a medical education specialist and family medicine residency assistant program director.

Rorie grew up in northeastern Pennsylvania with six siblings. Her father was an elementary school teacher and principal. She herself has always been involved in education: she has taught in public schools, graduate education programs, and has over 20 years of medical education experience. In addition, she holds a bachelor's in English and a Master's in Education from the University of Pennsylvania, and a Master's in Public Health and PhD in health studies from Temple University. Rorie was always well organized, high functioning, and spent her life meeting and exceeding expectations.

On March 12, 2008, Rorie was supposed to head to Gorham for a presentation. Before leaving, she went to take the dog out and grab the paper. Despite wearing ice traction devices over her boots to prevent slipping, both she and the dog fell. Rorie woke up lying in the driveway, unable to move. She could hear the dog and feel him breathing on her face, but she couldn't see anything. It took her a long time to move and roll over. Her entire focus was on getting back to the house because she knew Ross, who is self-employed, was on the phone and would have expected her to have already departed for work. If she didn't make it back to the house, it could have been hours before she was discovered.

Rorie followed the dog and crawled up the driveway, struggling to open the front door. She told Ross that she had hit her head. Her left hand was black and blue, she couldn't find her glasses, and as she sat on the couch she kept sliding to one side, unable to sit up straight. In her mind, she tried to go through everything she would need at the hospital (ID, insurance card, etc). She spent the day in the Emergency Department, where they told her that she “just” had a concussion and should go home, rest and to follow up with orthopedics regarding her broken fingers.

Pressured by her supervisor, Rorie returned to work two days later. She struggled immensely and doesn't remember much of that spring. She had to type with one hand due to her fractured fingers, and she remembers spending long hours at home trying to catch up on work projects, but never managing to get there. She could no longer prioritize tasks, getting dressed was difficult, and trying to initiate work projects was extremely challenging.

In December, Rorie's neurologist sent her to New England Rehab for a neuropsychological evaluation. The test was painful, frightening, and overwhelming, but at the same time it was comforting because the results validated all of the challenges she was having. She could not walk in a straight line, she had residual balance and vision issues, hearing challenges, trouble with initiation and attention, and more. Where she had always been highly organized, she now couldn't pay bills, had to check and recheck everything, and became obsessive about reviewing things over and over again. Rorie's whole sense of self had been tied up in her professional identity and she was having trouble reconciling these changes, so she started seeing a psychologist to help her come to terms with her new life.

At the time, Rorie was one of the instructors for the University of New England and Maine Medical Center's online master's program in medical education. She worked part-time on short-term disability and a couple months of long-term disability before the insurance company declared that she could work full-time with accommodations. Rorie continued going to speech therapy and the local brain injury support group while trying to manage work. After her employer discontinued her accommodations without notice, started the disciplinary process for dismissal, and hired someone else with the same position description but a different title, Rorie left work permanently. She was told she could apply for unemployment and was kept on as an inactive employee for a few months while she looked for another job within the organization. Eventually Rorie and Ross were unable to afford the COBRA insurance payments.

Losing so much of her self-identity and financial security as a result of her brain injury was a humbling experience that shook Rorie to the core, but she has come out on the other side with a different and positive view. She is a better and happier person now, she says. Joining her local support group enabled her to connect with other survivors, which allowed her to understand and move forward. She joined Brain Injury Voices, a survivor-led education and advocacy organization; as a result she can teach again, can help others, and can use her skills that are still there, just a little harder to access.

The most challenging thing Rorie has ever undertaken is to live a full life after brain injury. She turned her focus to the inside, to who she is and what is important to her. Her brain injury has not changed her worth as a human being, but she is not the same person she used to be. Rorie credits her incredibly supportive husband Ross, friends and family from Voices, her remarkable service dog, Ziva, and learning to meditate, focus inwardly and slow down with helping her have a full and rewarding life.
Rorie also has a renewed focus on one of her greatest passions: quilting, which she sees as a good analogy for her life with a brain injury. Before her fall, she had cut out pieces to make placemats. When she got well enough to return to quilting, she could not figure out how to put them back together. Quilting has helped her immensely with order and prioritizing, as well as enabling her to leave a tangible reminder of herself with family, friends, and the organizations she donates her quilts to. Rorie eventually learned how to sew both her life and her quilting pieces back together, a metaphor for how far she has come and everything she has accomplished.

Jackie Beckwith - June 2017

I can't be more thankful then I am right now! It has been just over a year now since my brain injury happened. I have been through many ups and downs as a result of this experience. Thankfully, I have had the most amazing support system: from taking me to therapy, to doctors' appointments, to parties, playing games with me, going on walks with me, or just a friend to talk to.

Over the past year, it has been a learning experience. Before my brain injury, I would work to keep myself busy. Since my favorite thing to do was work, I worked three part-time jobs as a bartender and a server. I loved being able to talk to tons of people. I believe this is what made me love my job so much. Unfortunately, with the brain injury I received, talking to people I don’t know has been difficult. It is now hard for me to just talk to someone I don’t know or don’t know too much about.

So what happened? I got into a severe car accident, and I lost my license due to the accident. Thanks to this experience, I have had to rely on my family and friends to bring me wherever I need to be. This is hard because before my accident, if I got tired of the place I was, I would just go for a drive. Now I have to wait until whoever is driving me to be available to bring me wherever I need to be. It’s hard because I never had to wait on anyone before and I could go or do whatever I wanted. Although it has been a traumatic experience for everyone who knows me, I would like to give a special thanks to my family, friends, boyfriend, boyfriend's family, and especially my bosses.

I can't even explain how lucky I am to still be here and not only that, but how well I'm functioning. The doctors didn't even think I would be doing this great. I had to learn how to eat and drink again, how to walk again, and I still struggle a little with my left arm and left leg, but it’s much better than it was. I cracked just about every bone in my face, including my nose. I broke my foot, my ankle, my leg, my pelvis, a bunch of ribs, and tore the skin off my left knuckles. And, I got this brain injury.

A lot of people ask me why I'm not as emotional or upset with life. Yes, I am stressed I can't drive or work, but I'm extremely lucky to still be here. My car accident was a life lesson but part of me is happy it happened. I feel like I learned a lot more than I would have before. I realized my support system is amazing and I have made new friends. Seriously, I can't thank everyone enough.

If I have learned one thing, it is that drinking and driving and speeding is not worth it. I always drove too fast, and I’ve cracked up my car a few times before. I had bought a brand new car the year before and now it is totaled. I will never drink again, because of the problems I have gained from the experience. I gained a brain injury, one of the many things I received, but I have relearned how to do everything. It has been a long and hard lesson, but worth the experience to me.

The biggest thing I have learned from this is I am going to share my story with everyone. If I can help someone change their decision about drinking and driving and about speeding, I am going to do it. It is not worth the lesson. I know in high school they told us not to drink or drive, but they didn't really tell us or show us why. I am going to be that person! The main thing I hope you get out of my story is if you need help or a ride, call someone!

Shara Lawhorne - May 2017

Before her brain injury, Shara Lawhorne was the picture of health and activity: she was very active, a vegetarian, and rode her bike everywhere. She worked with fire and safety patrol, coordinated shows and art festivals, attended University of South Florida, climbed Machu Picchu, managed a health food store, and was a gymnastics coach.

One day while riding her bike to work in the pouring rain, Shara was hit by a motor vehicle. While she doesn't remember much from the immediate aftermath of the accident, she remembers the rain on her face as she went down the hill and then she remembers floating through the air and people all around her in the street. The driver of a minivan had struck her head from behind – with the vehicle's mirror – at 45 mph.

As she lay in the road, Shara had what she describes as "an experience." Though prior to the accident, she didn't really believe or not believe in Jesus, she clearly remembers being at the bottom of the hill and seeing Jesus to her left. She doesn't know exactly how she knew it was him because it didn't really look like him, but she was climbing the hill with a backpack and he wouldn't let her go by. He kept telling her to go back down the hill and so she walked down switchbacks to get to the bottom of the hill where there was an enormous clearing the size of 20 football fields. There people were standing like a choir and they were different beings, different colors, and they vibrated and she heard the most beautiful music. She felt reassurance, peace, and bliss for just a second in her gut and then she woke up.

Shara was in paralyzed and in a coma immediately after the accident. She then had a stroke while in the coma and lost function on her right side (which was, of course, her dominant side). Shara had to relearn everything, and eventually transferred out of the hospital to a transitional living center.

Living in New Jersey after the accident was way too much stimulation (there was so much traffic, rush hour, strip malls everywhere) and Shara felt like she could no longer live there. She had family in Maine and decided to give life in Maine a try. For many years, she lived up on a 40-acre, self-sufficient property in Lincoln. She has lived in Bangor for the last eight years.

Shara continues rehabilitation and is working on a degree through the University of Maine Augusta in Bangor, a Bachelor's in Science in mental health, with just an internship left to complete.

One of her biggest current projects is Pets for Farmer Vets, which is operated by United Farmer Veterans of Maine, a volunteer, non-profit organization devoted to supporting veterans in Maine. They are located right next door to Shara and one day she contacted them about volunteering. They had just started the program and needed someone to oversee it, and now Shara is the primary contact for the program.

Pets for Farmer Vets works to match companion dogs (these dogs are not service dogs yet, but they can become service animals in the future if desired) with veterans who have post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). Veterans interested in participating in the program go through an intake process, get interviewed to determine the best match, and then are connected with the Bangor Humane Society. All of the dogs are rescues and the adoptions are provided free of charge for the veteran: the dogs are spayed/neutered, vaccinated, the adoption fee is waived, and the veteran and their companion dog are also provided with six weeks of obedience training.

Since November 1, 2016, Pets for Farmer Vets has matched five Maine veterans with companion animals. In March of 2017, the organization held a successful fundraising event, which raised $2000 to build a storage locker for all of the pet supplies needed for the program.

Interested in the Pets for Farmer Vets program? You can reach out to Shara at 207-431-0472 or visit the website: http://ufvme.org/pets-for-farmer-vets/.

Brian Brigham - April 2017

As a reward for earning my Eagle Scout rank at the age of 15, my father and grandmother gave me a new car—a brand new silver Monte Carlo SS. It was the year 2000. On the afternoon of October 4 of that year, I went for a drive with two friends, Mike and Jared, Mike in his Saturn and Jared with me. As 16-year-olds too often do, we got involved in a game of chase that would change my life forever. Coming out of a curve on a narrow country road, I tried to pass Mike, but went off the opposite side of the road, over-corrected and slid sideways into a large tree, with a direct impact on the driver’s side door, and my head. The accident report said I was traveling at approximately 108 MPH when I lost control. If there was one fortunate outcome to this accident, it was that Jared was somehow not hurt.

I was transported to Maine Medical Center (MMC) where the trauma team, including my neurosurgeon, did not believe I would live, however, after 15 days in the ICU I was stable, but in a coma and dealing with the onset of meningitis and a fever so high I required ice packs and a cooling blanket. Five and a half weeks after the accident, I developed life-threatening hydrocephalus that required the implantation of a shunt, and which also was the beginning of my emergence from the coma

Almost immediately, I began acute speech, occupational, and physical therapy, which occurred twice every day for the remainder of my three-month stay at MMC. All that I remember from my stay in Barbara Bush is asking the physical therapist why he was helping me. I thought he was working with me as punishment for a crime. During my hospitalization I experienced my first tonic clonic (grand mal) epileptic seizure, which further complicated my recovery, and remains with me to this day, though fortunately it is under control and I have been seizure-free for several years.

Following discharge from the hospital, I began a year of outpatient therapy at the Brighton Rehabilitation Hospital, which towards the end included learning to drive again, a goal I had set for myself and which kept me focused throughout those long months of rehab work. On the day before the first anniversary of my accident, I passed the Maine driver’s road test and received my new license. During my outpatient rehab, I was able to return to school on a limited basis, and thanks to credits already earned and the incredible support of Windham High School’s teachers, special education staff, and my mother’s tireless commitment, I was able to graduate with my class in May of 2002.

I attended the University of Maine Augusta's art program for a year. Then I enrolled at Mitchell College in New London, Connecticut, to take advantage of their special programs for students with disabilities. I returned to Maine after a year there and enrolled in the UMA’s art program again, with a concentration in photography, and in 2014—12 years after starting college—I was awarded a bachelor of fine arts degree. I have also taken classes in video production at Southern Maine Community College, and continue to look for opportunities to further develop my skills in photographic and video art.

Throughout this long journey I have had to deal with periods of breakthrough seizures, depression, frustration, and disappointment, but also uplifting successes and joys. I am thankful for the support system of my family, but worry about having my own independence from them, and at the same time, what will happen when they are gone. One of the most difficult things at this point in my life is my inability to find employment that is both rewarding and at the same time accommodating of my disabilities.

I have memory problems, especially short term, and have to learn things at my own pace, often several times before I can get them down. But unfortunately businesses today do not seem to have the time, patience, and understanding that is necessary when working with TBI survivors. I continue to look for meaningful employment through State of Maine Vocational Rehabilitation Services, but in more than two years of trying, nothing has yet worked out. 

I also participate in programs at the Krempels Center (a brain injury survivors' program in Portsmouth, New Hampshire), Maine Adaptive (formerly Maine Handicapped Skiing and other outdoor programs), volunteer with the Windham Historical Society, and pursue my photography. I recognize that my recovery would not have been as good, and I would not be where I am today, if not for the hard work, dedication, and support of dozens of teachers, medical professionals, TBI survivors and friends, and of course my family.

Jordan Emerson - March 2017

Have you ever felt trapped, unsure, and lonely? Well, I have felt that way for the past nine years. Envision being unable to speak, move your body, or express your feelings. This is how I spent three months of my life. When I was 13, I was in a terrible accident, crashing the compact car I was driving into the turn two wall at Beech Ridge Motor Speedway on August 8, 2007.

What would you do if you just woke up from a coma with a broken left shoulder, paralyzed vocal cord, paralyzed stomach, cracked left pelvis, and a traumatic brain injury on top of everything else?

 I have spent these past almost 10 years reinventing myself. Imagine waking up one morning and having to figure out who you are all over again. Add to that learning to walk, talk, and manage your emotions. 

My brain injury left me with left-sided neuromuscular weakness. I also use a knee brace on my left leg to assist me in walking because without the brace my knee hyper extends. I have limited mobility in my left shoulder, making tasks such as washing my hair very difficult. Think about this: you have a nice bowl of cereal and your belly is rumbling from hunger and you dig deep into the bowl with your spoon and get a heaping spoonful of “scrumdilliumptious” cereal, but by the time it reaches your mouth you have nothing but the shiny spoon you started with.

Let me tell you something about those darn intention tremors. Intention tremors affect my fine motor skills when I desire (intend) to do something as common as writing a note, picking up a cup, and, yes, trying to eat my favorite cereal. My hand starts to shake. The more and harder I try, the shakier my hand gets, resulting in scribbled notes, spilled coffee cups, and ending with the contents of my spoon all over me, leaving me embarrassed and defeated.

One positive aspect of recovering from a TBI is the people I get to meet. I'm referring to my survivor friends. I find comfort in knowing other survivors have been through what I am going through and their successes are my hope. Most kids go to college or work. My work has been my continued work on myself. I thought I would be in college, driving, dating, and busy like all my friends. I’m working on getting there too, but like everything, it’s just going to take me a lot longer.

Life is definitely hard, and one of my driving desires that inspires me is to educate people about how damage to the brain affects personality, thinking, and physical abilities. For example, did you know that another common struggle with living with a traumatic brain injury is initiation? Many people may not realize that the brain helps us become motivated. When that part of the brain suffers trauma, motivation can be difficult at times, which makes it extremely difficult to want to do anything.

Please join me as I continue my journey through TBI. It is my hope and ambition to become a local spokesperson for the general education of the public to what TBI is and how people are affected by it.

Please friend me on Facebook, follow me on Twitter (@thecomebackkid), or email me.

(*A version of Jordan's story originally appeared in the Windham Eagle.)

Kelly (Burns) Theberge - February 2017

My name is Kelly Theberge, and I’m from Vassalboro, Maine. Every year in the U.S. 700,000 people are diagnosed with a brain tumor. Brain cancer is much different than other cancers: it’s very difficult to remove a tumor in the brain, and frequently the person is left with physical or cognitive side effects whether or not it’s removed and whether or not it’s cancerous.
The life expectancy after a brain tumor diagnosis is an average of five years.

Five years to say goodbye, five years to live, but most likely, five years to lose everything they ever had—their ability to walk, to talk, to see, to get themselves dressed or feed themselves, and the ability to remember their wife, their daughter, their parents, and the life they once had. They slowly lose everything they ever worked for, and at the same time it ends so quickly.
My dad, Bob Burns, died from a brain tumor at the age of 49. He had three years. He was one of those patients I just described. Not only did he lose everything and his life, but hundreds of people around us did too. He owned his own company. People lost their jobs, their best friend, their husband of 27 years, their son, their dad. I was 18. My sister was 19. My brother was 11. Our lives changed forever.

Everyone’s lives changed forever. It was like a brick wall was put in front of everyone I knew, and they couldn’t move past this devastating event. A piece of everyone died when my dad died. My grandfather developed depression, which manifested into shutting the world out, and actually losing his own ability to mobilize and communicate, which eventually lead to his own death. I can’t imagine losing a child.

My mother, at first, woke up every day to take care of her children, but with the empty expressions day after day, it was obvious she would wake up just to fall back asleep. She would say she already lived the best part of her life. I can’t imagine losing my husband.

My brother didn’t engage in regular conversation or express any sort of feelings for years. I can’t imagine losing my dad at the age of 11. My uncles became angry: angry at my dad for leaving them, angry at the world, maybe angry at themselves?  I can’t imagine losing my brother.

I was angry as well. I was 18, and in my first semester of college. I stayed close to home for college, while all my friends got to move on, and live "the college experience."  I continued to stay at college close to home for about another year after my dad died, and then moved on as well (only an hour away), and eventually, probably lived "the college experience" too much. I appeared to live to a normal life of going to school and working, but often expressed my feelings clearly through anger or tears. The entire family drifted apart. My dad was the piece that we all needed to be a family. My dad’s friends disappeared. The people who were like my own family were gone forever. Or so I thought.

Eight years later, after finishing my Master’s degree in Occupational Therapy, meeting my husband, getting a job, and finally having stability in my life, I decided to turn it around. There was still one piece of me that wasn’t stable, that wound still felt unhealed, and I had unfinished business to attend to. I have one life as well, and I wanted to live it like my dad lived his—making a difference, and living every single day with a purpose. I wanted to finish my dad’s fight. He never failed; he never lost.

My husband and I joined the National Brain Tumor Society, and have been going to Capitol Hill since 2015 to advocate for more funding and treatment for brain tumors. I am now the Maine State Lead Advocate for this cause with the National Brain Tumor Society. I also created The Bob Burns Memorial 5K – the only fundraising event for The National Brain Tumor Society in the state of Maine. 2017 will be the 4th annual Bob Burns Memorial 5K. Combined, my committee and I have raised nearly $25,000 so far.

With this event, I reunited with my dad’s friends after eight years, and continue to see them regularly. As a matter of fact, on my wedding day this past year, they were the only people I could keep my eyes on as my brother walked me down the aisle. My brother grew up into a respectful, outgoing, funny, handsome man, and my hero. He joined the United Stated Marine Corps. My mother is my best friend. She travels, dates, volunteers, and supports me from behind the scenes. She encourages me to be independent with this journey. As far as the rest of the family, we’re probably as close as most normal families.
I continue to look for fellow advocates, voices, sponsors, and constantly raise awareness in my community, the state of Maine, and as much of the world as I can possibly reach. The more people I can reach, the more people that can be involved, the better our chances are for being the change we need in this world – a cure for brain cancer.

So, I’ve decided not to stop until there is a cure, or at least proper treatment for these patients, and their families. You can’t fund something you have no awareness about.

To become an advocate or help Kelly in any way, whether it’s by phone, computer, joining her in Augusta at the 4th Annual Bob Burns Memorial 5K on July 20th, 2017, or joining her on Capitol Hill – please contact Kelly Theberge at: Kelly.Theberge@MaineGeneral.Org or go to Kelly’s Cause for Brain Tumors Facebook page.

Debbie Salvador - January 2017

In 1951, at a mere six months of age, Debbie Salvador was sick with spinal meningitis for nearly two months and then suffered a cerebral hemorrhage. The injury left her with a weakened right side, including foot drop and a "lazy" arm. As she grew up, she also realized that she interpreted the world differently than other kids (upside down and backwards) and that she had to manually turn things right side up in her brain. Teachers felt bad for Debbie because it was difficult for her to move around with braces on her arm and leg, so she never had to go up to the blackboard during class and was able to keep her cognitive challenges hidden.

At around eight years old, Debbie had her first surgery to shorten her hamstring cord in her weak leg. She was part of a group of children undergoing experimental surgeries and they were first paraded in front of an auditorium full of people. Debbie was later molested by the individuals who prepared her for the surgery, and when she woke from the anesthesia she pulled the IVs out of her arm and pulled her hair out. Her father was so distressed by this that he then had a nervous breakdown. The surgery itself was also a disaster: they shortened her muscle too much, which left her with significant tremors. She was then put on Valium, which her mother told her was a vitamin.

In school, Debbie did very well in math and science, and very poorly in English. In high school, her short hand teacher caught her writing upside down and backwards and tried to have her thrown out of school. Fortunately, her bookkeeping teacher came to her rescue and she was able to finish high school.

After school, Debbie worked at Woolworths. One day, a man came in and asked for a corkscrew. Debbie didn't know what one was and the man thought that was cute, so he asked her out. They dated for a couple of years, and Debbie hid her brain injury from him. After they married, her husband became increasingly abusive.

Over the years, they lived in Massachusetts, the Caribbean, New Hampshire, and Maine, all while the physical abuse escalated and Debbie's abuse of alcohol increased in turn. At one point while she was drinking heavily and still taking the Valium initially prescribed to her as a child, she began hallucinating. She quit taking the Valium cold turkey the next day, but continued to drink heavily.

When they lived in New Hampshire, Debbie had to go to the hospital so many times (her husband continually blamed it on the dog) that the hospital notified the police. At that point, Debbie and her husband moved to Maine. Debbie tried to get sober, but her husband would not let her go to AA and at one point forcibly poured alcohol down her throat.

After 20 years of abuse, Debbie left her husband and got sober all in the same day when she ran away to Bangor in 1989.

Within a couple of years, Debbie's body began to fall apart. Since 1990, she has had over 30 surgeries: she was wheelchair-bound for a year and at one point she had to be on antibiotics for nine months to fight a serious infection. Ten years ago, Debbie was taking 45 medications, barely knew who she was, and was taking weekly ambulance rides to the hospital. Eventually the decision to reduce her medications was made, and she has been doing great since then. She has been on crutches since 2008, but after the success of a recent back surgery made a tremendous difference in her mobility, Debbie has been working hard to get off of them.

Debbie is grateful to be alive and doing as well as she is. She continues to work on her rehabilitation at WestSide, often working to strengthen her right side with activities like coloring and playing Battleship and Mastermind. She is a member of AA and loves to give back through her volunteer efforts. Over the years, she has volunteered at hospitals, with battered women, and with the Brain Injury WINGS support group, which she has been involved with for the last six years. Debbie has overcome so much in her life and she is an inspiration to us all.

Stacie Linkel - December 2016

Growing up I was my own biggest mystery. Everything happened to me before I was old enough to process it all so all I have is conjecture. I am unable to even pin down the details of the most significant impact on my life.

My best guess is that when I was eight months old I fell off the top bunk after one of my seven older siblings put me up there. I landed on carpeted concrete and regurgitated on impact. By the time my mom got home and called the doctor I seemed well enough to not require even a checkup. One sister blames a bump I sustained while being passed back in a moving car (this was the early 70’s). Whatever the cause, I didn’t walk until I was 2.

My next guess is that this trauma exacerbated autistic symptoms for which I may have otherwise been able to compensate (how does one test such a hypothesis?). To add insult to injury, when I was nine, some scar tissue (so they say) started blocking my cerebral spinal fluid causing “water on the brain” and I needed a shunt to drain it. Even though I’m smart, the combination wreaked havoc on my education, especially on my social interaction skills.

It wasn’t until I was in college that I started seeking answers and received my first correct diagnosis—brain injury—but the neurorehabilitation I received in Massachusetts didn’t seem to help. I was also struggling to keep a job longer than a few months. I didn’t realize until later that I essentially spent an entire decade or more being depressed. 

My oldest sister convinced me to move back to Maine and seek help from a vocational rehab counselor where she had worked. I was deemed unemployable and sent to Westside Neurorehabilitation where my case manager said that I was in charge. I think I shocked some of the therapists when I said I wanted to work on my social interaction skills, but they rose to the challenge. By the time I was ready to progress to a different level of therapy, Westside was in a transition and I was unable to rely on the only available case manager to guide my own transition.

Nearly a year and two vocational rehab counselors later I finally found someone to help me find, through a convoluted medical route, a Dialectic Behavior Therapy (DBT) group that let me stay on for 10 years of mindfulness, distress tolerance, emotion regulation and, yes, interpersonal effectiveness. Vocational rehab had also helped me further my education and acquire my lasting job at the state’s oldest library. DBT helped me cope with and keep my job.  

In 2012, I finally sought and received my autism spectrum diagnosis (actually high-functioning Asperger’s but with the new definition in the latest DSM, I just say HF-ASD). Even though it would seem that I have completed my therapeutic work and am deemed a success story, it still brings peace of mind to have the best understanding of just what it was about me that I needed and still need to improve.

Ken Shapiro - November 2016

In the summer of 2010 (at the age of 40), after years of experiencing strange out-of-body experiences and a ringing in my ear, I was diagnosed with a “giant” unruptured cerebral aneurysm whose mass had caused swelling and those now-defined mild seizures. In the fall of 2010, following surgery to clip and remove the aneurysm, I suffered a hemorrhage and a stroke. Despite months of acute inpatient and outpatient therapy, the stroke has left me weak and imbalanced on my left side, requiring I walk with a cane and live one handed for all practical purposes.

Despite these deficits, I’m happy be home with my wife and two young sons since late 2010, back at work as a website developer since 2011, and driving again since 2013 (with car modifications for one-handed steering).
I’ve also been a proud member of the education, advocacy, and support organization, Brain Injury Voices, since 2014 and am privileged to use that platform - as well as my blog - to tell my story, encourage other brain injury survivors (who I prefer to think of as “survivalists” or “strategists”), and generally provide perspective on brain injury and disability to anyone who’ll listen.

Glenn Leavitt - October 2017

In the fall of 2007, I suffered an ischemic stroke, which was caused by high blood pressure. I was in the hospital when I had my stroke. It was caused by a blood clot, which stopped the blood from going to parts of my brain. The doctors told my wife I wasn't going to live the day.

I was in a coma, but later that evening the blood clot dissolved and I came out of my coma. The stroke changed my life along with my family's. I cannot do the activities I once did around my home.

It is very important that I keep a normal blood pressure and keep it under control by taking my medicines and eating a healthy diet. I'm trying to stay positive and am determined to not give up because hard work pays off. I find it easy to ask other people for help, but I need to focus and try to execute the task myself first, then ask if I cannot achieve it myself.

When dealing with my disabilities, my left hand is disabled and I hate facing the fact that I have to deal with this forever. The stroke created terrible pain in my hand. After you are disabled from a stroke, it's hard to stay motivated in your recovery because you get better, but not to 100%.

I have 3rd nerve palsy in my right eye, which gives me terrible double vision. My left knee does not bend, so my foot sticks to the floor when taking a step and I have to use a cane in case I trip. I know my life will never be the way it was, but I need to adapt so I can process things as normally as possible. I miss not being able to pick up my grandchildren and swing them around. You miss out on the simple things in life that everyone else takes for granted. I do not have the patience I used to have.

Going to therapy has helped me mentally and physically. I need to stay focused on all my therapies I need to be successful. Being disabled for 9 years, I have improved with great success with the help of Maine Center for Integrated Rehab and my therapist. The first two years I was in a wheelchair and now I'm walking with a quad cane for up to 2000 feet. I am now volunteering at Waterville City Hall 6 hours a week as a greeter. I've started getting involved with the Elks Lodge doing non-profit functions and dances and raising money for charities.

Kelley McTague- August 2016

On a June afternoon in 2007, my children and I sat on the porch to watch a thunderstorm roll through. We had just spoken with their dad to let him know the storms were coming and to stay put or get home soon. After having a couple of beers with his cousin, he made the decision to get on his Harley and make the 15-minute drive home. Little did we know, he would not make it home that night. 

As he saw the red and purple lightning ahead, he decided to speed up to try and miss the rain. As he came over a hill at around 87 mph, he hit a young woman in her car broadside. They both experienced severe brain injuries and he broke nearly every major bone in his body. Witnesses stated that as the mangled metal mess came to a rest, the sky opened and the rain poured down. 

After two months in the hospital, many surgeries, and intense psychosis, he returned home to begin the recovery and discovery process: to figure out how to fit into his world and adapt to his new brain. We were so hopeful and did everything we could think of to try to help him manage his symptoms, find his way, and see the world in a positive way.

He spent much of the first four years after his brain injury contemplating suicide. We tried every medication regimen and to this day have been unable to find any medication combination that has helped him effectively manage his depression and bipolar disorder, which were severely exacerbated by his brain injury. We saw several counselors and he completed all of the OT and PT that our insurance would cover. 

We also had to deal with the legal issues. His blood alcohol level was just over the limit at .09 and he was criminally speeding. We were able to get house arrest for him and addressed the fines. 

The financial burden was immense. Our friends and family did some great fundraising that helped us so much, however, the medical bills over that first two years were more than we could bear. We tried to make payment arrangements and keep caught up. After never being late on a bill, we had to file for bankruptcy. I then lost my job of 17 years.  I began to experience significant anxiety and depression and was overwhelmed with life in general.

The strain on his relationships with his family and friends was also more than they could bear. The paranoia brought out by the brain injury caused him to make choices that eventually destroyed most of his relationships with friends. His inappropriate behavior and inability to reason and participate in crowded events strained his relationship with his children. After 9 years the strain on our marriage took its toll, and I had to make the decision to change our relationship as well. Although I am so thankful to still be his advocate, power of attorney, and friend, I needed to end our marriage in order to take care of myself. 

Now that we are divorced, he is eligible to get some help through the State of Maine's Brain Injury Waiver and we are hopeful that he may get some new support to help him continue to discover his potential. He has not given up. I respect him most for not giving up.

These experiences have led our family in amazing directions we may have never encountered and has built character in all of us to be advocates for brain injury. The experience has also given us countless opportunities to meet amazing people and to help create positive change for others. I am eternally grateful for that part. 

Brain injury affects every part of a person's life every day. The message of awareness our family would like to share with our community is to remember that it takes a village. When tragedy hits, the support of our village is often great. People we don't even know step up to offer a hand and show support. After the initial shock of the tragedy, most people revert back to their everyday lives, keeping survivors in mind and always hoping for the best.

It is important to know that when someone experiences a brain injury, there is the initial period of physical and brain healing, however, as a survivor once said to me, there comes a time when the healing slows and it's time for discovery: time to figure out how the new you fits into the world, a time to utilize your new strengths and weaknesses and figure out how you are going to adapt with your new brain.

 Recovery and discovery without the support of your community is a struggle and often unsuccessful. So, once the dust settles and for years to come (brain injury is a life-long challenge) reach out regularly to the survivor and their caregivers, forgive their mistakes, help with tasks around the house, slip a card in the mail, bake extra and drop it by, visit, even if it's once a year. If all the villagers made a point to participate in some small way and gave just a little bit we can assure the caregivers don't get burned out and open opportunity for growth and discovery for the survivor. Knowing that you have a village that truly cares all the time and shows it is priceless.

On May 22, 2016, John and Bre were involved in a motorcycle accident that changed their lives forever. John experienced a right leg amputation and Bre experienced a severe brain injury. As a family who has been personally affected by brain injury, we have been silently cheering on this beautiful young couple. The community has been amazing, stepping forward with several fundraisers. This has allowed the couple and their families to concentrate on healing and re-discovering life with new challenges.

Our family understands the financial burden of an event such as this. As the medical bills begin to roll in, there is a new level of financial support that will be needed. With both John and Bre being out of work and a long recovery ahead, any support we can give will be met with high gratitude. We have wanted to do so much more and until now were unsure what else we could do.

My daughters, brother, friends, and I have been training to hike the 100 Mile Wilderness from Monson to the top of Mt. Katahdin. We are excited to now use this journey to help Bre and John by raising additional funding to help carry them through, as well as to raise awareness about brain injury in our communities.

Please consider checking out our "Hiking for Bre and John" Facebook Page Facebook page for updates during our 100-mile journey and to learn more about how to help out.

Lauren Faeth - July 2016

When looking back over the past almost five years, it still feels like it was just yesterday. I had just graduated from high school and was on my way to college, or so I thought. Little did I know that in a matter of minutes, let alone seconds, my life would change forever.

July 29, 2011, is a day that I will never remember, but never forget. I was in a motor vehicle accident as a result of an unknown medical reason. This accident was in the newspaper and from this article I received immense ridicule and false judgement based upon my age. Commonly when a 17-year-old, or any teenager for that matter, is in a car accident, the common cause is because they were texting and driving, but that was not the case in my accident. Doctors are unsure to this day what exactly happened to me medically to cause the accident, but police and doctors determined that it was the result of something medical.

From the accident, I received a number of injuries, but the most serious injury I sustained was a traumatic brain injury. In high school I had remembered the brief discussions of concussions, but never took them seriously. In addition to the brain injury, I had some bruises and broken bones, injuries that I was familiar with from playing sports in high school. I spent 23 days in the hospital, with the first five days in ICU and the rest on an inpatient rehabilitation unit and an orthopedic unit after I had a surgery on my right foot at Central Maine Medical Center (CMMC).

Based on the brain injury I had sustained, I did not remember the first 14 days, and when I began to remember, I was in disbelief that I had actually been in a motor vehicle accident. When I remember my days in the hospital, I remember the numerous doctors and nurses going in and out of my room on a daily basis. I also remember doctors explaining how I might not be able to walk or go to college, and if I did, nursing school would be out of the question based upon the injuries I had sustained. I saw my life shatter before my very eyes; everything I had known and had fought for was gone.

I learned while I was in the hospital that my recent memory (short-term memory) was affected. This means that if my brain felt that the information or anything that was said or happened was not important, my brain would not store it in my long-term memory. Not only was my recent memory affected, but I did not understand or know how to do the daily tasks like brushing my teeth or using a face cloth to wash my face. In addition, I also had to re-learn how to walk (after surgery), write, study, and do simple tasks in life related to my brain injury. I also needed to go through a driving test again, once I had permission to drive from all of the doctors that were taking care of me (a year after the accident).

After I was discharged from CMMC, I began outpatient therapy at Goodwill Neurorehabilitation at Westside in Lewiston, Maine. I would undergo intense physical, occupational, and speech therapy to help me recover. As things began looking up, I faced a setback as the result of my brain injury. In November of 2011, I began to have severe muscle pain and contractures/muscle spasms. This caused my right foot, ankle, and leg muscles to contract and relax whenever they wanted to. In addition to the muscles spasms, I had great difficulty sleeping, and also was not eating much for food (even less than what I was eating after the accident). I would also have severe headaches that pain medication did not help to relieve.

After a while, I began to take control of the symptoms I was experiencing. As a result, five months after my brain injury I began my first online college course at Saint Joseph’s College, but this took convincing my occupational therapist, speech therapist, neuropsychologist, and parents. I was fortunate that Saint Joseph’s College had held my acceptance for a year and was even more fortunate that the college allowed me to take online courses to help with my recovery. The first online class would determine if I would be able to deal with the difficulty of college after a brain injury, and if I could, it would prepare me for college as well.

Throughout my recovery process at Goodwill I began walking with a walker, and then later a cane. I was on my way to college and would not let anything get in the way of achieving my dream of becoming a nurse. After successfully completing the one course, I began two courses the summer of 2012 and began Nursing School in September of 2012.

Although I faced a few setbacks that would threaten my dream of continuing college, I was also given the opportunity to become a part of a wonderful foundation, the Michael T. Goulet Traumatic Brain Injury and Epilepsy Foundation. I was awarded a scholarship from the foundation that allowed me to remain in college. In addition, I met the foundation members and began volunteering at events, and most recently became a member of the board of directors for the foundation.

I have noticed that since the accident I am a very different person than what I once was. I have learned to appreciate life more than I had before. I have learned that things happen for a reason, and that nothing is impossible. With hard work you can achieve anything you put your mind to. But most importantly, I have learned that having a brain injury, being in a car accident, breaking your leg, or any incident in your life should not define your life. Instead I have learned that you define your own life.
 
I am proud to say that on May 14, 2016, I graduated from Saint Joseph’s College in Maine with my Bachelors of Science in Nursing degree.

With any brain injury, you never know how quickly an individual will bounce back, or if they even will. The normal I used to be before my brain injury I’ll never be again, but having learned to embrace the challenges in life, I know today life is a challenge worth fighting for. 

Ted Brackett - June 2016

I need to begin this story by stating that the words you will read are mostly not mine. They are the words and experiences of doctors, nurses, psychologists, therapists, my late wife, and mostly not mine. I don’t remember approximately 6 months of my life.
 
On September 5, 2005, in a split second my whole life changed. My wife and I were priming my house. I was almost at the top of my 10ft stepladder and it fell over. I landed on my back and slammed the back of my head on my driveway. I broke my shoulder and fractured my skull. My wife heard my scream and ran around the front of the house and found me motionless on the ground. My heart had stopped and I was not breathing. She started CPR and I was revived in about 6 minutes. My step-son called 911 and soon after, the ambulance arrived.
 
I was taken to Maine Medical Center. While being transferred, I went into a coma. At the hospital, the ER discovered a broken shoulder, five broken ribs from the CPR, a fractured skull, and from the acceleration-deceleration accident, the TBI. Luckily, they also found a cancer, in my right kidney. My life was saved twice that day.
 
I immediately went to the ICU. I was constantly checked for brain swelling. My brain did not swell, but I was in the coma for nine days. The doctors told my wife that my brain was seriously damaged. My brain moved back from the blow and stuck my skull. The brain stem was disturbed. As a result, my heart stopped. My brain bounced to the right and my temporal and frontal lobes were damaged. It bounced again, to the left side, and damaged both of those same lobes on the other side. They told my wife, “We don’t know if he will come out of the coma or survive the accident. If he survives, major problems will result.”
 
I fooled them. I did survive, I did come out of the coma, and there were major problems. The doctors were amazed that I recognized my wife, but that was the only good result. I could not speak, and my body functions were minimal. They later found that I could not read and that I probably would not be able to write. They were correct.
 
I remained at Maine Medical Center for one month. My wife told me the care was excellent. I was then transferred to New England Rehabilitation Hospital of Portland (NERH-P). The doctors, nurses, and therapists did more examinations to plan my in-patient program. I was going to be very busy: major speech (SpT), physical (PT), and occupational therapy (OT) was planned. This therapy was done seven days a week. Every day I was scheduled for 3 to 4 periods of therapy. Even at lunch, the SpT director would come and have lunch with me. He even brought food from outside.
 
I was not eating or sleeping. I was losing major weight and because of being so fatigued, therapy was difficult. With the sleep problems, I would get up, at 1:00 or 2:00 AM and wheelchair around the halls. I would try to get into rooms, and also to leave. NERH-P had to monitor me constantly. I have been told by nurses (who are now good friends) that I was terrible.
 
After my wife complained about my eating, a surgeon placed a tube into my stomach to give me nourishment. I still lost weight, but it leveled off. I was an in-house patient for two months. I was able to have Thanksgiving dinner at home. The rehabilitation staff was not happy for me to leave, but insurance called the shots.
 
I started out-patient therapy the next Monday. I was doing therapy 3-4 days a week.
I was in PT for 16 months. In PT, I worked on balance, stamina, leg strength, and the ability to walk in a straight line. At the end of PT, I was able to walk without a walker or cane. I was in OT for 18 months. My upper body was very weak. I was having problems holding objects without dropping them. My breathing and heart rate would increase at the start of therapy. A big reason for this was being scared. I didn’t know if I was going to be able to carry objects or return to work.
 
After 10 years, when I get fatigued, I will still drop objects. The only problem now is that when I get nervous, my right hand will shake. With techniques, this is usually not noticed. I can hold it, I can place it, on a solid surface, and I can put it my pocket. This shake still bothers me. Before OT was completed, I worked on learning driving rules and techniques. Before being discharged, I had to take a two-hour road test with AAA. I passed the test and was able to get my license returned. PT and OT were so vitally important. I am thrilled that I am able to do everyday functions.
 
The therapy that I am so blessed to have had is SpT. I was, in SpT for 2 years. When I left MMC I could not speak, read, or write. My doctors felt that I would not be able to accomplish speaking well. My communication center, located in the left frontal brain, was destroyed. When I started SpT, I could speak some. The therapist was determined for me to succeed.
 
This was the hardest task that I have ever accomplished. I worked on speaking, writing, and reading techniques. I learned how to write by writing letters and short notes and essays. I learned to read by starting reading Dick and Jane type books. By the time I finished therapy, I could read a book. Today, with practice, I can read any material.
 
A year after SpT, I was able to see and speak to my therapist, who had transferred to another facility. I hugged her. I told her that I was so fortunate to have had her for therapy and that it was hard work for her. She laughed and said, "Ted, you did all the work, I did the kicking. You are communicating from some other part of you brain."
 
 I was finally totally discharged from NERH-P. There were still difficult times to come. During my therapy, I was told I was not going to be able to teach again. I had been a Special Education teacher for 24 years. I was crushed. Another result of the accident was that my filters for my emotions, depression, anxiety, and anger were blocked and at that time I had no control over them. There was no way was I going to be able to teach.
 
This was the beginning of two years of suicidal depression. I have been in weekly psychological counseling for 10 years. When things go wrong, I can get very depressed.
I have had two complete psychological exams, two years apart. They show that I am as intelligent as I have always been, but have some difficulties in certain areas. Some of these areas have improved over the years, through hard work and techniques.
 
I have tried to be employed twice. My emotions would not allow me to continue.
I am a member of WINGS, housed at NERH-P, which is a complete BI support group. I am a member of Brain Injury Voices, also housed at NERH-P, which is a small 12-member group, which educates about BI, advocates, and supports people with BI. I do presentation speaking about BI to help people to understand that BI is not an invisible injury. I am a BI Peer Mentor at NERH-P. I try to help BI patients and families to understand BI and how their life may and probably will change. I am a voting member of the Acquired Brain Injury Advisory Council. This is a state council that helps support people with BI throughout Maine.
 
I am an entirely different person after my BI. I am a very happy person. I continue to work hard. I constantly am working to find new techniques to handle my injury. Brain Injury is my LIFE.

I hope I have given you an idea of a severe TBI, and with hard work what I have been able to do.

-Ted Brackett   

Chris Cherry - May 2016

My stroke happened in Cape May, New Jersey. When our daughter was a student at Bowdoin College, my wife and I looked for a place to go on vacation at a reasonable cost. We both grew up in New Jersey, but had never been to Cape May. So for the next few years, we would drive down, visit relatives on the way, and spend a week in the oceanfront town of Cape May.

At the time of the stroke, I had been driving a big truck (tractor-trailer) for a company in Hermon, Maine. The Friday before taking my vacation, I came in, parked the truck, and left home Saturday to drive to New Jersey. Following a brief visit with family, we reached Cape May on Monday. The week was spent going to the beach, dining out, and walking around town enjoying the sights of beautiful old Victorian homes, many of which were well maintained and being used as B&Bs.

At 3 am on Thursday, September 23, 2010, I got up to use the bathroom and could not stand up. I was unable to stand because my left side so weak. My wife got me into our car and took me to Cape May Courthouse Hospital. Being a small local hospital, they could assess my condition as being a stroke, but had me taken by helicopter to Thomas Jefferson Hospital in Philadelphia. They kept me in critical care for the weekend and on Monday I was put into a rehab center in Bryn Mawr.

After six weeks of rehab, my wife came down to bring me back home to Maine. There was follow-up rehab at home for several weeks and then I started to go to the YMCA in town.

I do believe that you have to be your own advocate. For the past five years, I have spent two to three days each week exercising at the Y. I don't follow any program, except what seems to work for me. I will try something to see what effect it has. If I don't see a benefit, then I change. I was lifting weights with a system called a Smith machine that has the bar in a track, but found that my stronger right arm was doing more work. So I switched to using dumbbells, where both arms have to lift. My left side being the weaker, I lift with both arms only what my left arm can manage.

I would encourage everyone that has suffered a stroke or other brain injury to find some exercise program that works to help restore some function in your limbs. I know that I will never recover 100 percent of function, but seeing small gains, even after more than five years, makes the effort worth it.

-Chris Cherry, facilitator of the Ellsworth Stroke & Brain Injury Support Group 

Bob Sargent - April 2016

Describing Bob Sargent as well-traveled would be an enormous understatement. Born in China to missionary parents, Bob and his family returned to the United States in 1941 due to the Japanese occupation. He then spent his formative years in central Ohio and Pennsylvania before attending high school in Washington, D.C. After high school, he attended Bowdoin College, where he studied history.

After graduating from Bowdoin, Bob joined the Air Force and then spent 30 years with the diplomatic foreign service. Tunisia was his last post before retirement in 1988, and before that he and his wife Jane also spent time in the Netherlands, Belgium, Bulgaria, and Turkey. After Bob's retirement, they settled into life in the family home in Sedgwick, Maine.

On July 31, 2005, Bob Sargent was planning to travel across the world for a long-anticipated trip to China. The day before his departure, as he was playing tennis on a court in Deer Isle, he had a stroke and was immediately hospitalized.

Bob had been extremely active in sports his entire life: he played high school and college baseball, football, and lacrosse; had been skiing for nearly 60 years; and loved cycling. After his stroke, all of his activities were placed on hold while he went through rehabilitation and worked on recovering.

By October of 2005, Bob was back on the tennis courts, despite his left hemiparesis (his non-dominant side) and that fall he remembered seeing a promotional ad for Maine Handicap Skiing (now Maine Adaptive Sports & Recreation). Bob gave Sugarloaf a call, was referred to Sunday River, and the rest is history!

According to Bob, he owes both his recovery and sanity to Maine Adaptive. Before his stroke, Bob was an excellent skier and cyclist and he was afraid that he would never get to ski or cycle again. He was uncertain of the possibility of recreational activities and his therapists had discouraged him from trying over safety concerns, but Bob did not want to give up his active lifestyle.

These days, Bob skis standing up on two skis (with the tips held together with a bungee for safety) and with an outrigger baby ski in his unaffected hand. He also now has a customized trike so he can cycle again. He attends many Maine Adaptive events for the skiing and cycling opportunities, but he also loves being a part of the Maine Adaptive community.

Maine Adaptive offers free year-round recreation opportunities like skiing, snowshoeing, paddling, and cycling to adults and children with physical disabilities. For those interested in learning more, visit www.maineadaptive.org.

Heidi Hemingway - March 2016

In July 2004, my life as I knew it had a fatal accident. While climbing an aluminum ladder to get in the eaves of our garage, it began to fall over. I tried to grasp onto a rafter, but wasn’t able to reach it. That is the last thing I remember about the incident itself.

By the time I went out to the garage to the time I called my friend for help, it was determined that I was knocked out for over 40 minutes. When I spoke to her I was slurring my speech and I had a goose egg on the rear of my head. I told her it felt like my head was going to explode and she told me to put an ice pack on it and that she would be right there to take me to the clinic.

My friend arrived and went out to the garage to assess the scene and found that I had not “fallen” off the ladder as I had thought, nor had the ladder fallen over. The ladder’s metal was defective and the fatigued metal had collapsed under my weight. At the time of the accident I only weighed 190-200 pounds, and the ladder’s maximum capacity was 300 pounds.

My friend took me to the clinic, which I walked into sideways because my balance was so grossly affected. My doctor wanted to admit me overnight for observation for a closed TBI, but being an EMT myself, I thought I knew better. I was adamant that aside from the goose egg, ringing in my ears, and headache and balance issues, that I was fine. The doctor was still concerned but knew both of us well and gave my friend explicit instructions for the next 72 hours and let me go back home.

Now this is not from memory, not any of it. Most of it is well documented in my records, but it’s just not imprinted in my brain. I wish I could remember. I don’t remember much about those times. Oh, and I broke my big toe, too!

What I do remember is the pain. Physically, the debilitating headache was so bad, to the point of nausea, lying in a dark room with sunglasses on, and an ice-cold cloth on my head. Later came the unexplained “white-outs.” Also, the emotional pain of not being able to work or do things I used to do like driving, camping, fishing, and biking, to name a few. I began having psychological pain, experiencing mood swings at the drop of a hat, and I became suicidal, along with other psychological issues I couldn’t understand and didn’t understand I needed help for.

It became painfully obvious that I needed help which my friend could not give me. For example, one day she came home to find me taking the television apart. “What are you doing?” she asked. Without hesitation I quite matter-of-factly replied, “Putting these voices back where they belong.” You see, this head trauma had caused me to have voices in my head and sometimes these voices were not very nice and I would try all kinds of things to get rid of them. I had to go to a psychiatrist and psychologist and am on medication now and am doing fine today.

I went through seven neurologists in 11 years. It was very frustrating. My first neurologist quit on me; he told me I was too hostile after I wrote him a letter asking him to help solve my “episodes,” as he labeled them and which he said were not seizures. I was at my wit’s end and told my doctor I knew it was more than a migraine (his diagnosis), which I had had for years. This was different. Apparently my words were threatening to him and he said he could not treat me anymore. I finally hit the jackpot with my lucky seventh neurologist; she found these symptoms and diagnosed me with petite mal seizures.

At one time I was on 15 prescriptions and having anywhere from two to three seizures a day to 20-25 a week. Since then, I have found a wonderful neurologist whose goals match mine, and I have maybe one seizure every four to six weeks. We are still working on lowering that! I am also down to eight prescriptions and some herbals for treatment.

Now, I said my life as I knew it had a fatal accident. My life had an accident that I have spent 15 years recovering from, and in a way I will always be recovering and learning new things to help me cope with the headaches, memory loss, frustration, lack of concentration, bouts of insomnia, seizures, anger, loneliness (even when people are near), mood swings, appetite swings, and loss of interest in things I once enjoyed, even the most simple everyday tasks. These are all very real symptoms and okay to feel, but when your life is consumed by them like mine was, you need to admit that you can’t do it on your own and get some help.

The brain injury and its wacky symptoms don’t have to define you. You are you in spite of it.

Remember, just as life goes on after your brain injury, don’t let others use your injuries (and don’t you use it) as an excuse for anything in your life that honestly doesn’t have to do with it. Sometimes it is what it is. Don’t get in that comfortable pattern. Live life with your injury comfortably, not because of your injury uncomfortably.

 

Henry Seekins - February 2016

I am a month shy of four years out from my brain injury.  It happened March 22, 2012, and I have been in the process of recovering ever since, all because I rode a motorcycle without a helmet.  Who thinks that they will ever crash?  That's right, no one.  I am a good bike rider and I never expected to crash, either. The thing is, an accident is not planned, so no one ever expects it.

I was on my way to a job interview; I don't remember this, but I put the pieces together after I checked my voicemail and had to wash the blood off of my portfolio pages. It must have been a short distance to go. "Ahh…I don't need a helmet; it's so darn hot out!" I have no recollection of the crash. But I have been told the following.

I was coming up to a four-way intersection. The vehicle in front of me had their blinker on to turn right so I must have thought, "I just have minutes to spare before the interview starts!"  I was going straight so I was about to pass on the left.  No.  This is an example of why you are not supposed to pass on the left at an intersection and this was my mistake.  I started to do so, and revved my bike to full throttle: BRAPP!  To my surprise there was a van in front of him turning left so when I was half-way past the vehicle, I’m guessing that I tried to stop but I didn't have enough time.  IMPACT!

I had broken eight bones!  And that was the minor part...I was lucky!  It was a window van and the glass gave way as the side of my face struck it.  I still have a little glass under my skin, and probably always will.  If it was something else I might not be here talking to you today.
I was lucky again, as there where two police officers at the corner gas station who saw me crash and provided immediate response.  Then I was lucky a third time!  I had crashed a few blocks from the Maricopa Hospital in Phoenix, Arizona.  It was a short trip to the I.C.U. 

I spent three weeks in a coma and then the same time in a semi-coma fighting for what little life I had left.  Then I got flown to Spaulding in Massachusetts for some time where I spoke my first words "Ahh, that hurts!" is what I said when they where adjusting a brace on my arm. Atrophy was one of the complications of my being in a coma.  They were so excited to hear me speak!  Then I went to EMMC, and Kindred Rehabilitation.  It took nine months before I moved home. I had been reborn.

The result of that unexpected accident was eight broken bones and an STBI, a severe traumatic brain injury.  It's not just life or death, there is a third result, called living with the consequences.  Just wear a helmet and protect your noggin.  It is easy to strap a helmet on; it only takes 15 seconds. Compared to what I have had to go through, years with an "S" of recovery. You have no backup assistant on all of those files.  Every brain injury is different, as are the side effects, outcomes, and life-long challenges. Doing this small preventative measure could divert you from this tragic experience that I was lucky enough to have survived.

In the past three years I have had to recover, so far all of my bones have healed.  My STBI has been reclassified from severe traumatic to start with, to a traumatic, and once again to moderate. I am still struggling with short-term memory and balance.  I shall continue to progress and my goal is to return to a normal person in the workforce.

So to sum up the main points:
1) Wear a helmet, because no one ever expects to crash.
2) Never pass on the left at an intersection, even if you think it’s okay!

Fiona Chace-Donahue - January 2016

I have had eight concussions since 2007. My first concussion occurred when I fell out of a loft bed onto a nightstand when I was ten. I wasn't diagnosed until several months later because my Lyme disease made it difficult for doctors to determine the cause of my symptoms. When I was 13, in 2010, I had my second concussion during a soccer game when the ball came flying out of the goal and hit my head from behind. I played the rest of the game (you know how intense middle school soccer coaches can be) and after the game I walked home, got into bed and hardly left it for weeks. A month later while I was still at home recovering, I stood up from bed, lost my balance and hit my head on the wooden floor. That winter when I had mostly recovered, my still rather concussion-ignorant family and I decided that I could probably ski and in my first, and only, race of the season I fell face first onto a sheet of ice. I got up and kept skiing only to fall backwards and hit my head at the end of the race, effectively ending my dream of becoming an Olympic skier. That summer, 2011, I ran down a hallway and straight into a hanging trap door, successfully landing myself with another concussion.

I didn't sustain another concussion until the spring of my freshman year of high school, 2012, when I was hit in the head with an ice ball. Most people laugh when they hear that I got a concussion from an ice ball and I usually laugh too before explaining that after having one concussion, not to mention three, it is a lot easier to sustain a concussion because one’s brain is much more tender and in my case, still recovering. In the winter of 2013 I had another laughable concussion: I was hit in the head with a yoga ball during a sports practice. “It was a big ball going really fast!” I always say in an effort to defend my delicate head. For the next year I went blissfully without a concussion and in the winter of 2014 I got my last concussion to date when I stood up quickly and slammed my head against the low hanging trunk door of a car.

Over the past nine years I have missed a lot of so-called “regular teenage life.” I remember very little from fifth grade to tenth grade; in fact, I have zero memories of my best friend in those years even though I’ve known him since first grade. I missed school and sports and social events and I gained weight and became depressed. I dealt with horrible chronic headaches through classes and struggled to explain my pain and inability to concentrate to my teachers. With the help of a team of doctors at Boston Children’s hospital, I have been able to gain coping skills that have proved to be invaluable to me in everyday life. I rarely have headaches that force me to drop everything to lie down in a quiet, dark room, and my number of day-to-day headaches has significantly decreased.

Today I am 18 and I haven’t had a concussion in almost two years! I have acquired my driver’s license, spoken at conferences at Boston Children’s hospital about chronic pain, graduated from high school and next year I will attend Mount Holyoke College. I wrote my common application personal essay about my concussions and the same essay was published as an editor’s choice in Teen Ink! When I think about how far I have come, I realize I don’t actually have a good picture of it. My mom, who maintained her full-time job while taking care of me and bringing me to seemingly endless doctors appointments, still tells me about how scary my recovery often was for her and my family. I do, however, remember many, many people whom I have to thank for their hand in my recovery. From my team of doctors at Boston Children’s hospital to my primary care doctor and my family and friends, I have so many wonderful people to be thankful for.

Catherine Breese - December 2015

My name is Catherine Breese I am a 37-year-old woman. I was a dental assistant for over a decade.  I have a life partner named Mike; we have been together for nine years.  We own a home together and have two children, a son who is 6 and a daughter who is 8.

Have you heard the Wizard of Oz story? Did you know that story was about me? I was home in Kansas with my little dog Emma.  A storm was coming.  I had a sense of dread and panic come over me.  I collapsed and when I woke up, I wasn’t in Kansas anymore!  My house, my dog and I were in Oz, a.k.a. the hospital.  The house had landed on the first witch, which was aortic dissection, which is when the largest artery from the heart splits apart.  This happens mostly in men ages 40-70 with high blood pressure and smokers.  I am not a male or smoker, nor do I have high blood pressure. In fact, I ate very healthfully and ran every morning with my dog.

My aorta was repaired and that’s when I met the Tin Man.  I received a new heart valve, which was metal and ticked like a clock.  I embraced the Tin Man and we traveled along the yellow brick road for a while.  I thought the Tin Man and I were doing great on our journey together.  I thought he and I would be together forever, but the witch had other plans for us.  She sent off some flying monkeys, a.k.a. strep bacteria, to stop us on our journey of recovery.  Those flying monkeys ripped us apart!  Attacking joints and my new heart valve, a piece of infection came off this valve and made its way to my brain, which cut off blood supply and caused a stroke.
 
This was when the Tin Man and I met the Scarecrow, which was my stroke.  He couldn’t walk well or remember things.  He was a good-natured fellow so we welcomed him to join us on our road to recovery.  My metal ticking heart valve was removed and replaced with a donated, real-person valve, so it could no longer collect flying monkeys if they were to attack me again.  We met another friend on our journey.  He was trying to be brave but he was getting overwhelmed.  I embraced the Cowardly Lion and asked him to join us on our journey.  How could he be afraid in our little group of friends?  We helped him to be brave and together we skipped and sang along the yellow brick road.
 
I was Dorothy who just wanted to go home but we ended up in the poppy field that put us to sleep delaying our journey of recovery.  On the Fourth of July, my family and I were going to watch the parade.  Mike was pushing me in my wheelchair and we hit a bump and I flew face-first into the sidewalk!  One of my front teeth came out!  I was horrified!  Blood everywhere!  Luckily, I am a professional and knew exactly what to do!  I oriented my tooth the right way and put it back in!  Emergency room here I come again!  I had a broken nose and they stabilized my tooth by putting some putty on it to hold it in place.  I went to the dentist later and needed two root canals because two of my teeth died.  I got my root canals done, plus they bleached the inside of my teeth to match my other ones.  My other tooth reattached itself.
 
After Glinda the good witch woke us up from the poppy field, we continued on our yellow brick road of recovery.  Being happy and positive is very helpful in your journey.  You are with yourself all of the time.  Recovery doesn’t stop when you go home.  It can continue there as well.  Many of the stretches that are shown to you in therapy can be done at home.  Think about all of the things that you would like to do again and ask your therapist how you can reach that goal.  Think about your recovery and get involved!  I like to test drive my new body to see what it can do.  It does not perform the same way my old body did, but with practice, I can make it work.
 
Traveling on the yellow brick road, the witch appeared again!  She set the poor Scarecrow on fire!  I had been feeling great and confident on my feet.  My little dog Emma had ripped up some paper and made a big mess!  Me, with my stroke brain, a.k.a. Scarecrow, went to vacuum it up   Thinking I could use my vacuum as a cane I fell on my left side and broke my hip.  The witch had set the Scarecrow on fire but Dorothy threw a bucket of water to put the fire out and melted the witch, defeating her.  Another trip to the hospital!  This was wonderful!   More therapy!  I got a walker, which forced me to continually weight bear through my left arm and hand.

After my stroke, I had a choice to make about what to do with my left side.  I could ignore it or believe in it.  I chose to believe in it!  I called it my sleepy side when I have heard many people call it their dead side.  Calling it dead leaves no hope for recovery, but sleepy means it will wake back up.  Word choice is important.  Since day one, I have used my left hand to steady my toothbrush while putting toothpaste on it, or putting silverware in it while washing dishes.  I talk encouragingly to that arm and leg.  Doing things one-handed is hard, but it can be done!  The first time I tried putting on my socks was extremely frustrating!  It probably took me an hour.  I cried with frustration, but I learned little things along the way, like your feet must be very dry and baby powder works great to make slippery feet and legs!  I broke down a lot in the beginning, but I eventually got better and faster.  Practice and patience are needed in abundance!  You only have one body so you have to make it work for you.

After my stroke, I would increase my stamina by not taking naps and standing as long as I could, once I started standing.  I was exclusively in a wheelchair for a long time. Then, the therapists started putting me in the standing frame.  I hated it because it was scary; I used to call it the rack because I thought it was torture!  I remember the first time I moved my left leg.  I cried because I was so happy!  It was an amazing day!  I told EVERYBODY!  I was the happiest girl ever!  Moving my leg was my first big accomplishment.  All of my therapists told me that weight bearing would make it move and it did!  I had decided that this would work the same for my left arm!  What better way to weight bear through my left arm than to get on my hands and knees?  My poor therapists were like, “What do you want to do?”

That was when the looks they gave me changed for the better.  I started taking a more active role in my recovery. Being on my hands and knees isn’t just about getting my arm back; it’s about getting up from the ground or floor after a fall.  I fell in my kitchen on May 6 while I was making a sandwich.  I sneezed and lost my balance and fell on my butt.  I got on my hands and knees and managed to get my feet under me and stood up.  Not hurt at all.  Although I am a professional faller, I am also a motivated patient!

Recovery is my job now.  I am with this body all of the time and think about all of the things that I used to do and try to do them now.    Always believe in yourself; you are your own biggest fan and supporter!  Don’t let little things discourage you from your goals.

I am Dorothy who has finally made it to the Wizard.  The Wizard didn’t give us anything that we didn’t already have.  The Tin Man, aortic dissection, was the most sensitive and he was easily repaired.  He rusted stiff a few times, but was quickly put back on his way with the use of the oil can.  The Cowardly Lion was much braver than he thought.  The Scarecrow learned how to get along without a brain and his walking remained awkward but he managed just fine.  I returned home with the joyful memories of my traveling companions.  There is still a lot to do to bring my new friends up to speed on life on the farm.  The Scarecrow will live with me for the rest of my life, I just need to find a way to incorporate him into my world.  Luckily, the Scarecrow is a positive fellow and willing to try new things and different ways to do them.  The Scarecrow is my stroke and I look at him like a new friend, not like a burden.  You have the choice.  Get along with your new friends or fight with them.  Choose friendship and love for a smooth, happy road to recovery.

Troy Morgan - November 2015

At the age of six, Troy Morgan suffered a ruptured aneurysm, spent six weeks in a coma, and was left legally blind. Three years ago, he suffered a stroke and he has utilized poetry as a healing tool. Here is one of his poems:

My Journey to The Top

I must have been lost
When trying to heal,
While making a change
I was cut a raw deal.
We all have our barriers
When trying to climb,
Mine knocked me down
I then fell behind.
But with my attitude
Positive, no doubt,
I began to wonder around
To think things out.
There must be a reason
I can't climb to the top,
Once I'm half way
Someone yells, "STOP!"
Even though, I was blind
And now I can barely see,
I know somewhere in my pocket
I must somewhere hold the key.
That will unlock those doors
So that I can find my way,
To where there are no barriers
That will be the day.

-Troy Morgan

 

Larry Marquis - October 2015

It all started in 2005. We had just gotten engaged and I was noticing a flashing in the lower left-hand corner of my eyes, known as vision seizures. My PCP sent me for an MRI and found that I had a brain tumor.  I was sent to Mass General in Boston to see a specialist.  The tumor kept growing and we were told it needed to be removed before it was too late.

I mentioned to my new wife-to-be that if she wanted out because of circumstances unknown, that I would understand. She said, no, that we were in this together and she has been there right along the whole way. We married August 23, 2006, and she is the most loving, caring wife and caregiver I could ever ask for. And I know it was harder on her than I.  A caregiver and support system is of most importance to get through a TBI or ABI.

On April 9 2009, I had the operation that changed my life forever. The following evening I developed two brain hemorrhages, one each, on the back left and right side. I was in the Boston hospital for ten days, and for the first three, I was completely blind. I didn’t know where I was, who was there, or what had happened. It was scary, for sure.  I later learned that my loving wife was there all along.

I was transported to a local hospital where I had only a week of rehab. In that week I saw or imagined there were large holes in the hospital floor, things flying around, and the tops of tables peeling and so on. It kind of freaked me out. I was sent home until I could be start rehabilitation.

While waiting at home with constant care, it was very difficult for me to accept what was happening to me. I only saw half of things, like peoples’ faces, because I had lost my left peripheral vision and could only see half of everything in both eyes. I couldn’t read, write, walk, or talk very well and had memory problems. I had to learn these things all over again. I didn’t know if I was ever going to get better and contemplated suicide. I just no longer wanted to be like this.

A few months later I got into rehabilitation and things started to get better very slowly, but I was making progress. Learning all over was troubling at times and I would get very frustrated at myself and at others sometimes for not understanding what I was going through and what was going on inside my head. Sure, I looked normal, but I sure as heck didn’t feel normal.

I lost my ability to drive, which has been my biggest loss of independence.  Of anything, this I miss the most. People that I worked with and those I thought were friends are not in my life like they used to be. I’ve become more sensitive, and look at life differently. I cherish every day, good or bad.
I don’t know if I have gotten used to me being the way I am or if I have improved some. I guess a little of both. I’m very grateful I didn’t take my life when I was at my worst. There is so much to live for, especially family.

I’m doing the best I can now and I realize that if you think you have it bad, well, there is someone out there worse off than you. Yes, every day is a challenge, people that don’t know your story can be cruel, and my new life is a new journey that has a lot of unknowns, but that’s okay. I have a new family of friends with TBI and ABI. They understand me as I do them.

My brain tumor has started growing again and recently I had proton radiation done, which hopefully will stop the growth. I’m not going to let anything get in my way and stop me now. I’ve come a long way and I do whatever I can and I’m up for the challenge. I clean house, cook, keep up the yard work, cut wood, build wood projects, fish, and so much more.  My goal is now to help others with disabilities and Veterans.

I have had eight heart attacks, died twice, neuropathy, two strokes, A-Fib, diabetes, blindness, and I am unstable, but it will take more than that to stop me now.

One must never give up after having a TBI /ABI, as there is so much to live for. If you fall, get up and move forward. Live, laugh, love; it will get better. It won’t be perfect, but what is?

 

Carole Starr - September 2015

Carole Starr is a Maine native who grew up in South Portland. For much of her life, Carole loved teaching and performing; she was a freelance teacher with a Master’s in Adult Education, a freelance grant writer, and a musician, having played the violin for 23 years.  She loved everything about classical music including rehearsing and performing

On July 6th, 1999, Carole was driving for work and was hit broadside by someone going 50 mph. She remembers the sound of metal on metal and then lost consciousness as the car spun and the windows shattered. As she regained consciousness, there was someone yelling, “Get out, get out!” She climbed out of the car and did not feel any pain at the time but was dazed and didn’t feel “right.” An off-duty paramedic had her lie down in the median until the ambulance arrived.

In the Emergency Department, Carole was told she had whiplash and was asked if she had hit her head. Having no recollection of it, she answered “no” because she didn’t realize at the time that her memory was discombobulated and missing pieces. When Carole had the opportunity to read the accident report, she would start to realize just how much of the accident was missing from her memory. 

It would be six weeks before she was told she had a brain injury and nearly a year before she received any brain injury rehabilitation. To this day, she wishes the emergency personnel had asked different questions.

That year after the accident was the worst of Carole’s life. Everyone kept telling her that she would be fine and she continued trying to go back to work and music. Two hours of teaching would put her on the couch for two days, she no longer knew what she was doing, and she could not remember her students’ names. She couldn’t follow her own lesson plans and when she looked over them, it was as if they had been written by a stranger. 

The first time she opened her violin case at the orchestra after the accident, a string was broken and she had no idea what to do. Though she’d had the same seat in the orchestra for ten years, she could not figure out where to sit. She lasted five minutes at that first rehearsal and someone had to drive her home because she knew her address but could not remember how to get there. Everything sounded excruciatingly loud and her extreme sound sensitivity prevented her from being in a room with any sort of music.

For a long time, Carole blamed these challenges on the pain medication she was taking for her physical injuries from the accident, but the symptoms persisted even after she no longer needed the pain medication. She thought that if she tried hard enough, she could make her brain injury go away, and there were some people in her life who did not believe that her brain injury was real.  Not being believed was devastating to her.

With help from medical professionals, family, and friends, Carole slowly learned strategies to cope with her brain injury and adjusted to life with a disability. She was unable to return to her teaching career or music. She has reinvented herself as a brain injury keynote speaker and the leader of the survivor group Brain Injury Voices. Carole first started speaking about brain injury in 2003, when she participated in a workshop organized by her mentor, national brain injury speaker and author Beverley Bryant. In 2006 and 2008, as a member of the brain injury support group at New England Rehab Hospital, Carole organized and spoke at evening workshops for survivors and families. That led to the invitation to deliver her first keynote. In 2009 she gave her “Never Give up on Happiness” speech at the BIA-Maine conference.

Carole benefited greatly from being mentored by Beverley Bryant. During one of their many lengthy conversations, Carole and Beverley talked about how there were a lot of folks in the support group at New England Rehab who had moved beyond needing support and were ready to offer it to others in a more formal way: thus the seed was planted for the formation of Brain Injury Voices (BIV), a Maine brain injury survivor group based in Portland. As Carole put it, “We wanted to use our experiences to make a difference.” Nine people attended the first meeting in 2010.

When she first co-founded BIV with Beverley Bryant, Carole had little idea of what it could become and how much good the group could do together: the power of survivors working together is stunning and something that none of the members would be able to accomplish individually. Their mission is three words—Educate, Advocate, Support. BIV now has 12 members and is looking to help form other groups like BIV. They relish the opportunity to give back and pay it forward, and their stories and insight are valuable to both brain injury survivors and professionals.  Their website is www.braininjuryvoices.org

Over the last 5 years, BIV members have volunteered more than 9100 hours, completed more than 800 peer-mentoring sessions, gave more than 100 presentations, workshops, and keynotes, and raised more than $19,000.  In addition, BIV won the prestigious Hospital Award for Volunteer Excellence from the American Hospital Association in 2014. 

On October 20, 2015, Carole Starr will debut her new keynote, “Weasilience”: Handling Life’s Wild Moments, for the Beverley Bryant Memorial Lecture at the 6th Annual Conference on Defining Moments in Brain Injury.

 

Carol Rohl - August 2015

Carol Rohl first came to Maine in the 1970s to attend a course at Outward Bound’s Hurricane Island, a remote island in Penobscot Bay about 75 miles northeast of Portland. Originally from Chicago Heights, IL, she attended Carroll College (now Carroll University) in Wisconsin where she majored in social work.  

During her time with Outward Bound, Carol fell in love with the Maine coast and she went on to work for Outward Bound for seven years, eventually getting her Coast Guard license so that she could run boats for them. She would spend six months of the year on Hurricane Island and then spend winters working in Colorado at a ski resort; over the years she held many outdoors and sailing positions.

Beyond the great outdoors, music was Carol’s other love. She played piano and sang and learned the folk harp. In the mid-80’s she met Gordon Bok, another local folk musician in the Camden area, and the two eventually married. Carol had built a beautiful house in Warren with her own hands, a lovely place where she hauled her own water and tended beautiful gardens, and Gordon had a wonderful place in Camden, so they decided to keep both houses. They traveled all over the country and world together, including New Zealand, Australia, and England, often performing together.

In September of 2004, Carol suffered a debilitating stroke. An ambulance transported her to the local hospital and then Life Flight flew her to Maine Medical Center in Portland. She had lost the motor function on her left side and spent six weeks at New England Rehab. When she returned home in November, living arrangements were one of her biggest challenges.

Though Carol longed to return to her home in Warren, it was clear that could not happen immediately. Gordon’s house was very small, so they ended up staying with Gordon’s step-mother for a time, and then moved around a bit while Carol recovered. When Gordon needed to travel to Alaska for touring commitments in the weeks after Carol’s stroke, Carol’s sister-in-law and parents came to stay with her at different times.

Family and friends offered continuous support during Carol’s recovery, and the highlight of many of her days was receiving mail. She recalls that one long-time friend wrote her every 2-3 days and, knowing how much she loved flowers, each card displayed a watercolor drawing of one of the state flowers. Continued support through letters and cards made all the difference in the world on the days when visitors were just too much and especially after the shock and rush of the initial event had worn off.  

It would be two years before Carol would return to live at her home in Warren. Carol and Gordon worked hard to make changes to the house so that she could maintain her independence. They designed and built a chute so that she could continue to haul her own water and constructed railings to increase her safety and tackled each challenge one by one and with great ingenuity.  

Transportation became another concern. Though she felt comfortable driving a vehicle a year and a half after the stroke, the process of driving became too much with having to park, walk, carry items, etc. Carol is very fortunate to have an amazing support system, which enabled her to sell her car and no longer need to shoulder the burden of driving.

Through all of these challenges, Carol has learned so much. She spent a lot of her life helping others, and now is on the receiving end and has learned to ask for help when she needs it. She has also learned to pace herself, using a dear family member’s analogy that you start the day with so many quarters in your pocket energy-wise, and you have to be careful how you spend them. As a result, friends will often ask her, “How are your quarters holding up?”

Carol still loves to garden, and she has spots every 50 feet or so where she can stop and rest. Rather than spending a lot of time working on the garden, she now enjoys to just spend time there. She has planted perennials that mostly take care of themselves and works on it little by little as she has the energy.

Every day poses its unique challenges, but Carol is still gaining strength on her left side and making improvements in hand strength and gait. She continues to attend physical therapy and keeps pushing her limits, frequently asking herself, “Can I do this with my left hand?” Carol’s perseverance and vivacity of spirit are evident in every aspect of her life, especially her beautiful gardens and home, and she refuses to let the challenges of her stroke prevent her from living her dream.

Debbie Walker's Story - August 2015

Even at a young age, Debbie Walker was no stranger to challenge. At 13, she developed juvenile macular degeneration, which left her with significant visual impairment. Though she was still able to read to some degree, her mother was integral in enabling her to continue her education through high school and beyond, whether it was reading aloud materials or writing them larger so that Debbie could read the words herself.

With her mother’s continued support, Debbie went on to graduate from the University of Maine at Presque Isle with an associate’s degree in criminal justice before continuing on to the University of Maine at Farmington, where she received a bachelor’s degree in rehabilitation counseling. During this time, she worked closely with the Special Olympics, even attending the International Special Olympics as an ice skating coach, and she looks back on those days as some of the best of her life.

On April 21, 1996, at the age of 39, Debbie suffered a stroke and found herself in the ICU. Doctors determined she was suffering from vasculitis and performed brain surgery on the right side of her brain. The stroke left her paralyzed from the neck down and able to speak, but not very well. Eventually her strength and function returned on her right side, but her left side was slow to follow and she remained in intensive rehab until October of that year.

Debbie worked very hard at her rehabilitation; anything that her providers thought she couldn’t do, she put all of her energy into in an effort to get back home.  Basic tasks were challenging, and she had to relearn how to brush her teeth, drink from a cup without spilling, and walk. Another unexpected result of her stroke was the need for two hip replacements down the road, due to steroid-induced bone deterioration.

After her stroke, Debbie desperately wanted to return to work as an activities director, but was no longer able to keep up with the fast pace. In addition, she went from being very social and extroverted, to suddenly being temporarily very introverted, which required a huge adjustment on her part. One of Debbie’s biggest challenges continues to be overcoming her deficits in executive functioning, like focusing, problem solving, and memory.

In September of 2007, Debbie went to lunch one day and couldn’t figure out what to do with her fork.  She had also had several recent falls, but up until that point hadn’t given them much thought.  Given her history, a friend insisted that she go to the hospital. After some tests, she was informed that they had found a mass in her brain. 

After meeting with a neurosurgeon, Debbie learned that she had a benign meningioma (a tumor that arises from the meninges, the membranes that surround the brain and spinal cord) at the top of her brain stem and that she needed surgery.  She was devastated at the thought of another brain surgery and the potential complications, but also at peace with the fact that the situation was out of her hands.

In addition, Debbie had a family cruise to Bermuda scheduled for the following week.  When she inquired about whether she could still go, her neurosurgeon told her to go and have a good time and that they would do the surgery as soon as she returned. So, Debbie went on that cruise to Bermuda and had a blast! 

It was tough to return home, as she knew what was coming, but her neurosurgeon and his team worked with her to make the surgery as minimally stressful and disruptive as possible, including Debbie not seeing her surgeon in his operating room attire, being able to have friends and family close by up until just before she went into surgery, and not being awake when she entered the operating room.

While recovering from this second brain surgery, Debbie found herself excruciatingly sensitive to light and sound. She recalls that during her initial days of rehabilitation, the sound of a trash bag being shaken out was the most disturbing noise she had ever heard in her life. Thankfully, these sensitivities improved over time.

Over the years, Debbie has worked with autistic young adults, juvenile delinquents, battered women, and with the homeless through the Bread of Life program, in addition to being an advocate and educator for the visually impaired community. She was the Activities Director at Walter’s Home in Hallowell for ten years and she truly has a gift for helping others.

Nowadays, Debbie is involved with many local organizations. She is on the program committee of the Rainbow Club, a local educational and social group for visually impaired and blind adults, and also attends Blind Bowlers gatherings, a social group that meets twice a month and has big bowling and cribbage tournaments. Debbie is also greatly involved in the brain injury support group in Augusta and talks with people one-on-one as a mentor.

Debbie also never lost her love for learning and continues to find new ways to explore and expand her knowledge. For the last eight years, she has been attending classes at Senior College in Augusta, including art classes and traveling classes (her favorite of which was a “waterfall” class where the students visited different waterfalls all over Maine). These classes are exciting, inexpensive, and a great way for her to socialize.  Debbie has also taken cooking classes at the local hospital, including culinary topics such as diabetic cooking, stews and soups, and Italian cuisine.

Debbie credits the wonderful support from her family, friends, and church family, as well as the doctors, nurses, and rehabilitation staff as a big part of her successful recovery. She also strongly encourages everyone to listen to Celine Dion’s song, “Because You Loved Me,” every line of which resonates with Debbie. While acknowledging that there are still many challenges ahead, Debbie continues to find joy in learning and helping others, and her hard work and determination are an inspiration to us all.

Ralph’s Story- July, 2015

I had been living in South Berwick, Maine, and at the time I was a self-employed handyman by trade. In late 2006, I had been having chest pains for a month, from what I thought was only a chest cold. Then, on November 3rd I went to the Emergency Room of York Hospital, where later I had a heart attack. Days later I was transported to Portsmouth Regional Hospital (PRH) where I underwent open-heart surgery.

Due to complications, I was then transported to Tufts Medical Center in Boston, Massachusetts.  At that time, they redid the surgery.  During that second surgery I suffered two debilitating strokes, which landed me in a coma for two and a half weeks. During my coma there were times of hearing strange voices talking about cabbage.  I wondered why they were talking about cabbages; after all, what is the big deal with cabbages?  Then, much later in my recovery I learned that cabbage is a medical term which really means: “Coronary, Artery, Bypass, Graft” (CABG).

When I did finally come out of my coma, I was surprised that it was almost Thanksgiving Day already.  At that time I remember waking up in a strange place with strangers nearby.  I had no feeling below my elbows and knees, as well as no use in my hands and couldn‘t speak.  I could only hear people if they were facing directly towards me.  Then, one day as my two neurologists were leaving, one of them posed by my bed just long enough to say, “You’ll be lucky if you are confined to a wheelchair for the rest of your life.”

During the next two and a half months I remained in a vegetative state.  After two months at (PRH), I was then moved to New England Rehab (NER) in Portland, Maine. There I began intensive physical, occupational, and speech therapies.  When I first arrived at NER I couldn’t feed myself and I had to be lifted in and out of bed with a lift that was bolted to the ceiling.

After many OT sessions my OT would have me try to support myself enough to stand with the use of a walker. He was only doing it to strengthen my arms to stabilize myself with that walker. One day while having me do that exercise, I told him that I wanted him to help me walk again. He replied, “I understand that you have no feeling below your knees. Is that right?” I answered, “Yes!” Then he informed me that, “Because you have no feeling in your lower legs, you won’t be able to learn to walk again.” I was devastated. So I frantically realized that if I couldn’t come up with a very good reason to get him to at least try to work with me on this, that I would not gain any future opportunities to walk again.

With much persuasion I finally convinced him to think outside of the box in my case. (Thank God for finding the encouragement to become motivated).  During the next two months my OT took time out of each session to also work on my walking. By the time I was discharged I was able to walk one hundred tiles (feet) with the use of my walker, before tiring.

On the first day as a client at one of Goodwill’s locations, as an outpatient, I was assigned to two physical therapists. Over time they would work with me to walk using various assistive devices, for example canes, but I couldn’t adapt to using anything I tried.  Due to the hallways there being narrow, I persuaded them to also think outside of the box in working with me to let me try walking without any devices.  I was determined not to give up, and it took a lot of persuading before they gave it a go. Although they were skeptical of me ever being able to walk without some sort of assistive device, with their expertise and my determination, I was able to eventually walk without any assistive devices.

Now, I credit my being able to walk as I do now to both my occupational therapist at NER and the two physical therapists at Goodwill for being willing to think outside the box.  Now my life’s pretty much back on track. I work part-time at a local Wal-Mart as a floor assistant. My job involves things like cutting keys, stocking shelves, and assisting customers. I also volunteer at a local hospital where I’m doing things like painting and repairs, and I am also volunteering at that same hospital’s Rehab Unit.  There I share my story with the patients, offering them hope and inspiration for their recoveries, and try to accommodate them and the staff.

Nowadays I realize that I owe my very life to rehabilitation.  If it had not been for rehabilitation, I wouldn’t be alive today.  People who are in a vegetative state don’t live long, and for me, that was almost eight years ago. During my later recovery I learned how to go from my disability controlling my life, to me taking control of my disability. And lastly, my life could have never been as productive as it is now had it not been for all the rehabilitation. And for that I am truly grateful.

- Ralph Poland Stroke/Brain Injury Survivor

A True American Hero: The Scott Champagne Story - June 2015

While most people don’t remember where they were on May 3, 1986, Myra Champagne is not one of them. It was on a typical chilly spring New England morning that she received a call that she will remember for the rest of her life. In fact, the events of that fated day have changed the very course of Myra’s life.

Her son Scott had enlisted in the Maine Army National Guard while attending college in Plymouth, New Hampshire as a computer science major. While conducting a rappelling exercise with other National Guardsman on that May morning almost thirty years ago, Scott fell an estimated sixty feet onto the concrete tarmac at Bangor International Airport. Myra was in Dedham, Massachusetts when she received the call about the accident. She knew nothing of his condition, other than the fact that his injuries were severe and life-threatening.  “It was the fastest trip from Dedham to West Gardiner that I’ve ever made,” shared Myra in a recent conversation about that day, reflecting on how quickly her Plymouth Horizon made the three-state trip. Nothing could have prepared Myra for the news she received upon arriving back in Maine.

His doctors let Myra know that Scott was not expected to survive. His injuries were massive and seemingly insurmountable.  Scott broke both his legs, his hip, pelvis, eight ribs and an arm. Add to this a ruptured bladder, a skull fracture and severe brain trauma and the outlook for Scott looked grim. It was an attending nurse who first let Myra know that Scott had sustained a traumatic brain injury. “The doctors gave my son a two percent chance of survival,” said Myra regarding Scott’s chance of overcoming his injuries. Making matters difficult for the Champagne family was the choice of the local television station to play the video of Scott’s fall over and over again on the evening news. As Scott had actually bounced when he impacted the concrete, his family was left reliving the event with every rebroadcast of his fall.

As his family struggled to work through their own trauma, Scott lay in a coma, his fate uncertain. He remained in a coma for the next ten months. But where there is life, there is hope. Scott’s mom Myra never gave up hope. Ten months after the accident, Scott slowly regained consciousness. And thirteen months after his accident, it was time for Scott to go home and begin the next phase of his rehabilitation. His rehabilitation has been ongoing and will be lifelong.

Such is the nature of life after sustaining a traumatic brain injury. Much of Scott’s long-term, post-acute care was in Augusta at Togus Veteran’s Affairs Medical Center. The second year of Scott’s recovery found him hospitalized twice for ongoing infections relating to his accident. Far from any military battlefield, the real battle for Scott’s care was just beginning.  “We had to fight the VA for every benefit Scott needed,” said Myra. “They wanted him to go to Albuquerque at one point, and possibly to New York. There were really no local options at that time.” Having his mom as an outspoken advocate for his care was a veritable game-changer for Scott. 

As an active duty member of the Service, a lawsuit was not possible, but Myra was able to successfully get the Veteran’s Administration to cover the cost of Scott’s enormous medical bills. It was a hard-fought battle, but one she would wage again in a minute. “There was clearly negligence involved in Scott’s accident,” she said. “If you plan for an exercise like that, you damn well better be held accountable for it.” Scott’s recovery continued at Highwatch in Effingham, New Hampshire. Still confined to a wheelchair and more determined than ever, Scott spent a year at Highwatch before he was released. Myra again advocated successfully for Scott as the VA agreed to cover a portion of the cost to build Scott his own home.

Located on a parcel of land adjacent to his parents, Scott and Myra designed his new, handicapped-accessible house. When he moved out of Highwatch, Scott was finally on his own – yet near enough to his family to continue to get the vital support he needed. No one recovers from a brain injury and other life-threatening injuries on their own. As the years passed, Scott was able to find part-time employment at a nearby restaurant as a handyman and occasional dishwasher.

For someone given less than a two percent chance to survive, the very fact that Scott was again able to work is a true testament to his own inner strength and will to not only survive, but to build a life against seemingly insurmountable odds. Life has changed for Myra over the years as well. Back in 1986, little was known about traumatic brain injury. Even fewer resources were available than today. She spent many years as a traumatic brain injury support group co-facilitator.

Looking back over the last thirty years, she sees that not only has talking about her own experiences as a caregiver helped others, it has helped her as well. And Scott has grown into a man who has learned that there is value in sharing his own life with others. “Scott wants people to know what living with a brain injury is really like,” reflected Myra. “And his honesty these days about his challenges continues to help others.”

In his life before his accident, his mom calls him a typical American kid. “He was an athlete in high school with three letters, and often an honors kid. He was the type of son that other parents wanted their own children to spend time with.” Scott had high hopes when he joined the military while in college. He was only twenty-one years old when a military accident left an indelible mark on Scott and his family. But those who know Scott and Myra today know that they both continue to inspire others.

To Scott, we say thank you – for your service and the price you have paid every day of your life since May 3, 1986. And to Myra, your choice to serve others by sharing your own life challenges has lightened the burden of those who share your fate.

We thank you both – you are true American Heroes.

 

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