2016 Maine Survivor Stories Archive
December 31, 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.
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.
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.
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.
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.
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.
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.
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.
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