A support and advocacy agency
for individuals with brain injuries,
disabilities and seniors.
A support and advocacy agency
Shawn’s Story: A positive reflection on moving forward after a TBI
Shawn Barron, a traumatic brain injury (TBI) survivor, would like his story shared in the hopes that it will shed some light on what individuals with a TBI may experience, and hopefully be helpful for caregivers and loved ones. Although no two brain injuries or journeys to healing are the same, Shawn feels that there is a lack of resources available, such as books related to TBI and views him sharing his personal experience as invaluable. “I feel that many people are unaware that a TBI survivor’s recovery can last a lifetime, and we are all unique in our injury and recovery,”
Kara Lynne's Story
Before my brain injury, I thought I had a straight path to success in all aspects of life. I was a school counselor with a fair salary, I had a good car, friends, better than average health, a boyfriend, a cottage that I rented on Chautauqua Lake, and dreams and hopes for a future filled with possibilities and desire. This existence was soon to be shattered as I was exposed to neurotoxic chemicals at my place of employment.
How could one possibly be exposed to toxic chemicals in a school you may ask? I guess it was a catastrophe waiting to happen; the work was not safely done. A renovation project which was supposed to be completed in the summer of 1992 went into the Fall. The carpet was laid down one day after it was made, never really giving it a chance to cure properly. In addition, the glue which was used to adhere the carpet was contact cement and should have not been used. Also, the roof was being sprayed with isocyanade foam for insulation at the time as well. We were told it would be sprayed before and after school, as it was so toxic it could take the paint off cars. Something went wrong and some of this material entered the building while some of us were still in there. We were dosed with a chemical soup which caused diverse injuries.
My brain injury is known as toxic encephaloppathy. When exposed to organic chemicals, the chemicals adhere to the fatty deposits in the brain and can destroy brain cells (neutrons). In addition, the gases can displace oxygen and brain damage can occur as a result of anoxia (lack of oxygen). I have all the symptoms of a mild to moderate brain injury, with things such as poor concentration, attention deficit, fatigue, tremors, seizures, headaches, mood swings and nerve damage.
Although my life has been completely turned upside down and at times I thought of giving up, I turned my tragedy into something good for myself and others. I knew it would help me recover. I moved to Buffalo in 1995 when I was well enough to be on my own again and looked for help to start my life over. Headway of Western New York helped me to take the first steps. I wanted to feel needed again and useful to someone. I also was in need of a gauge as to how much I could do in an office. I volunteer at least two times per week, usually working on the computer and answering the phone and doing other jobs. I find I tire easily and can't maintain a job for two hours, but it is a start and I can take a break at Headway and go back to it after lunch. For a survivor this is very important. The office staff and volunteers accommodate my needs so I feel I can do my best and not have to worry about faltering if I have a really bad day. I try to do the really hard concentration jobs in the morning if I am going to be there after lunch and that way I don't feel so worn out. I still miss the Kara I used to be working 8 or 9 hours a day as middle school counselor. However, I feel I am contributing to a very important cause and have learned more from my injury and about people than I would have being a school counselor. In some ways I feel I will have more success understanding life on its terms now. My confidence has increased tremendously and I am surrounded by the best friends since coming on board.
Kelly and Carrie Mendola's Story
May 16, 2003 started out as a normal day, but did not end that way. Kelly had a devastating car accident as he hit a tree while taking a curve during a severe rainstorm. Having sustained many extensive injuries, including a traumatic brain injury (TBI), he had to stay at ECMC for a long time. Upon returning home, we had little knowledge or understanding of TBI. We were given the gift of Headway, a place we were told to turn to for information. We not only received extensive and helpful information, but we also received support and friendship. When a brain injury occurs, it affects the entire family. We cannot tell you how much Headway has meant to us. It has truly become an integral part of our lives. What a godsend!
The year 2002 held a lot of dreams for the future for Lisa. She had just turned 21 and would be graduating with a degree in Early Childhood Education. Her boyfriend of one year was building a home that they planned to share after marriage and was very active with friends. She also had a full-time job. Life was great and going as planned.
On March 21, 2002, three months after her 21st birthday, Lisa had a seizure called Status Epilepticus – she seized for 28 days. She was in a drug induced coma to try and ease or stop the seizing. During her two month stay in ICU we were given very little hope of her recovery. Our priest was called in for last rites, we were told that if we were praying people to do just that and so we did along with many friends, family and strangers whose paths we crossed. One day Lisa just stopped seizing. On May 17, 2002, Lisa left the hospital.
Lisa's brain had been taxed to the limit. After prolonged seizing and swelling of the right side of the brain it had eventually shrunk smaller than the left side. She had to walk with a walker, learn to read, write and use her hands. Physical and occupational therapy were a large part of her days. Life as she knew it had changed.
Lisa continues with some therapies and is continuing to improve in some areas. She attends support groups such as Headway of WNY which has helped her greatly with understanding and hope. Lisa has a boyfriend now, she volunteers and is enjoying life again. Some things will always be difficult for her but with the help of several wonderful people and agencies like Headway she smiles again and is becoming comfortable with who she has become.
Ken’s journey of brain injury and recovery began with his being suddenly stricken with a brain aneurysm in 1999. He was hospitalized for about three weeks at Millard Fillmore Gates, and three weeks at ECMC for rehabilitation. Initially, he was unable to talk or reason well, and he received some intensive therapy in the hospital. Only 46 years old, he was not sure if he would ever be able to continue his job as a construction foreman. When he got out of the hospital, he did outpatient therapy only briefly, because he was anxious to go back to work. When he tried to return to his previous type of job, he knew how to use the tools and what needed to be done, but was unable to multitask and put things in the proper sequence. He describes going into “brain freeze.” “I would have confusion, confusion would lead to doubt, and my thinking process would just shut down.” After failing at 4-5 different jobs, he was frustrated and upset. He decided he needed to stay at home and do more to take care of himself. He thought getting involved in his block club might help. They were putting flower pots at the corners that year, and the block club was disappointed that some of them had been stolen. Ken suggested building some flower boxes out of wood around the trees by the street. This is how he invented, at first unknowingly, his own personal system of rehabilitation. He got some money from the neighbors to buy materials, and said he would provide the labor to build the boxes. He was not immediately successful. He made more cuts than he needed to. He had to take more notes and plan out his materials more carefully than he had done in the past. “I had to figure how not to make mistakes,” he said. “I would get distracted and forget things. I had to learn to focus and concentrate.” He found that if he took careful notes, and developed a routine of doing the same tasks in the same order, his work was improving and his confidence was increasing. Soon there were boxes up and down his street, and people outside the neighborhood were asking about the boxes. “There is not a doctor in this world that could have prescribed what I did,” said Ken. “It is something I had to work through and find myself. Being able to contribute did a lot to make me feel better and more confident.”
“I hope everyone can find something like this…something they like to do, that shows they can contribute and can build their confidence and help with their recovery.”
While Ken’s life is not exactly the same, he has made remarkable improvements since those dark days in 1999. Early in his recovery, Ken began attending peer support group meetings at Headway of WNY. As he and the other members shared their stories, he found he was not alone in dealing with this life changing event. “At first I didn’t want to admit I had an injury and it was giving me some problems,” he said. “It took me a while to admit it, and then to work on it.”
“Other people without injuries would try to tell me they knew what I was feeling. If you haven’t lived it, you can’t really understand it. They would tell me they forget things too. I would tell them, multiply that times 150. Then see what you can accomplish in a day.”
Even long after his injury, Ken continues to give generously of his time, as he continues to attend support groups, telling his story and encouraging others to persevere. “I want others to understand there is hope,” he says. He meets with a variety of students and community interns at Headway also, and shares with them what it is like to have a brain injury and what issues are involved in recovery.
I was born with a blockage in my 4th ventricle that caused my soft spot [in my head] to be hard and stick out, unlike that of a normal baby. I also had hydrocephalus [excess fluid on the brain]. Doctors did a spinal tap and everything reversed and I developed normally until I was 20. In 2004 I was in a car accident with a blow to the head. Over the next few months I began to get headaches, at first here and there, then they were all day, every day. My personality did a 180, I was fighting with people, I stopped going to school. I came home from work one night, had insomnia and put on a movie. (Of all movies, it was “Something’s Gotta Give.” Go figure!) Then the headache intensified. The AVM (arterial venous malformation) in my head had ruptured. I knew something was wrong, I tried to call for help, but my fingers had already begun to not work. I grabbed my cell phone and hit send, and hoped whoever I talked to last was awake and would answer, even at 4 AM. My friend Tony answered (thank the lord). I simply said “I need my mom” and hung up as I was going to vomit from the pain. Not knowing how to reach my mom, Tony jumped in his truck and raced to my house, and I was able to tell him my mom’s number. I was on the bathroom floor vomiting when she arrived, she called 911 and I went to St. Mary’s. They saw the bleeding on CT scan, so they called Mercy Flight to send me to Gates, but as luck would have it, it was too foggy to fly. The only option was to get there by ground, and I wasn’t expected to make it there alive. At Gates I underwent emergency brain surgery for 29 hours. I had a Cerebral Aneurysm in the right hemisphere that caused my left side to become paralyzed. I was in a coma for 29 days. I woke up to “Live Like You Were Dying” by Tim McGraw. I was moved to ECMC Rehab where I spent three months.
Besides paralysis, at first I was unable to speak, breathe on my own, swallow, and eat (I was fed by a tube). My balance was shot. It is still not great, but coming along, and so is my speech. I had to relearn almost everything most people take for granted.
At the hospital, my main thought and goal was “I’m gonna beat this!” After I was home, I was mad at the world and would often say “Why me?” Then I would think, “SUCK IT UP! [Others] would have given up by now!” Looking back, it was all part of the grieving process.
After four months in the hospital, going home was like a breath of fresh air. Although I no longer had my own place, I was still happy to be out of the hospital. I had home therapy for nearly two years and then outpatient therapy for almost 6 years, until changes to Medicaid made that run out.
I went to NCCC and graduated in 2010 with an Associates in Human Services and went on to attend UB for a BA in Health and Human Services.
I do a lot of volunteer work. I raise money for and participate in Headway’s Walk Run & Wheel every year, and have put together and run a support group [for survivors of brain injury] in Niagara County. I like to get the word out that you are not alone to other survivors. I volunteer with Buffalo Psychiatric Center at the Ransomville Clinic. I did an internship there and stayed on as a volunteer. I also sit on the board of the Brain Injury Association of NYS (BIANYS) as the WNY representative. Credit is due to Vicky Meyers, who is the FACTS Coordinator for WNY, for helping me gain the seat and for all of her hard work.
Therapy, school, the support group, staying connected with old friends, making new ones, and going to the gym to work on things I learned in therapy have all been a part of my long recovery.
Headway sends kudos to Mark, not only for his determination in his recovery, but also for his determination to volunteer and give back to others in the process.