Brain Injury Survivor Stories
A Father's Abundant Love by Susan Stork
Susan Stork was 19 years old and a freshman in college when a near-fatal automobile accident smashed her young body and plunged her into a six-month coma. Only the superb work of several surgeons and her family’s unfailing love and attention kept her alive.
Sue did miraculous awaken…but found that she was forever changed by a profound and permanent brain injury.
A Father’s Abundant Love tells Sue’s story from childhood, through her trauma and into years of rehabilitation and adaptation. Very little was known about brain injury in Ventura – or anywhere in the country, for that matter – but Sue’s father, David Stork visited Washington, D.C. and Sacramento many times each attempting to encourage legislative action to help people with this major disability.
When not enough was being done, David, his wife Midge and a few other local families founded the Brain Injury Support Group of Ventura County – which later progressed into today’s Brain Injury Center. Stories and pictures of those initial days are real highlights of this book, as is their plan for an inspiring future.
Sue Stork was one of the original survivor/members in the Brain Injury Center of Ventura County and author David Wilk served as BIC president for eight years. All proceeds from book sales go to support the Brain Injury Center.
Buy "A Father's Abundant Love" by Su Stork
New World Is Hard by Linda Wells
23 yeres ago my huband & i were in catalina island to celebrat new yeres eve. Of wich i did not make it on dec 30, 1992. Rex (my huband) & myself were riding in a gofl cart with 2 oters, we were siting in the back, going up a street the driver drove grovey & threw me off the gofl cart. I rolled down the stret hit my head.
The ambulance came took me to the hospital in catalina i had a bump onmy head, was unconsicuos for just a little bit. The doctos said i had a concusion. To take me toour friends home watch me. Well within 1 huor i culd not takl, wakl, my rite side of my body was like paralized my face droop down.
My huband took me back to the e.r. they air vacted me off the island to long beech memoral hospital. They did a cat scan onmy brain. I had a bleed in my brain the size of a lemon.
A othe doctor told my famly that i wood probaly never be abel to proces informatoin told to me think & speek to respone back. More or less like a vegable. Oh my, how did my famly deel withthis one. Me i was not knowing anthig. They gave me paper to rite to comuniate. I was a rite hand person, so i tried my left. They aske me my name. I knew in my heed i was linda but win i rote it wood be 1100222, no i know that does not say "linda". I had a long long jurney ahead of me!!!
I hard my first seizure only 1 of 100's to come, grand mal, petite & focal. They started terapy rite away. Then i was moved st. Johns rehab in oxard, then solulutions in sant a barbar then back to st. Johns. Then home!!!!! I had 5 yeres of therape speech, physical. It was so so so hard…..i never wanted toloose my husband, i wanted to be the best i culd be. I worked very hard always, lots of confusment, yuor frends leve yuo becuz yuo a r now not the person yuo once were.
Last june my hubin sudenly pased away & now i am on my own trying to figure my world without any family leveng here. I have wonderful friends that are suportive.
The new world is hard hard hard…
I have trubel with noese, vision, gruops, no musci, cant reed books, cant drive. My thinks & words may not always work or make cents. Speling oh that yuo can see in this leter—i do my best…..i lost ability of money, but i know how to give a credit card. Concentraton, comprehending well. We go thru 5 steps, denial, sadnes, anger, barganing, & finaly acceptance!!
Well i do like my self most of the time !!! Yuo must work hard. Try to stay postive, & you can do more than the dr's tell yuo can do, i have learned my new world. As my hubin rex wood say, 1 foot in front of the other & everting will be ok.
I do like being with my brain injury friends….they so get it.
I Was Trapped Inside Myself by Ryan Clem
He was a devoted surfer, a star golfer, a handsome, popular young man from Ojai. Clem was just out of high school, two months into his freshman year of college in Santa Barbara on the night a friend had a party in the Ojai foothills. He was walking down the winding road back to his car when a drunk driver careened toward him…
Clem leaped to the side, but the car veered the same way, crashing into him. Clem’s foot got caught in the wheel well and he was dragged 100 feet before coming free. His leg was almost severed, his head was smashed and his neck was broken. He was gushing blood and convulsing at the scene. Witnesses could not imagine that he would survive.
The young student was in a coma for two and a half months before he slowly began to emerge. Deep inside the blackness, he did have some sense of self. He certainly felt pain. He remembers voices telling him not to be afraid, that he would be all right. He could feel the tubes passing inside his nose, going down into his throat. He felt constraints on his legs and his neck. His body was numb and he could not move or even open his eyes. He tried to talk, but he could not get a sound out. It all seemed like a terrible dream.
In time, Clem could recognize familiar voices: his mother, father, his brothers, his best friends. There were equal parts of pain and confusion. They were talking to him, offering encouragement, and he wanted to respond to the people he loved. “But all of my feelings were inside my head,” Clem remembers. “I could not communicate anything with anybody. I was trapped inside myself. I felt so lonely.”
It took four months before Clem fully emerged from the coma — only to face a long, daunting battle to resume his life. He had a serious brain injury.
Helping others is a common goal among people with brain injuries. Whenever someone in his support group needs assistance, Clem is the first to step forward with an offer to help. “Why should I feel sorry for myself when maybe I can do something for someone else?” he asks. “If I possibly can, I’ll always help someone who needs it. There’s always someone worse off than you.”
A Miracle on the Mountain by Gina Bartiromo
(Gina Bartiromo is a brain injury survivor and active member of BIC. This is the story of Gina’s accident in Yosemite National Park that made national news.)
I knew I was struggling. I was aware I was cold. I had no idea my life was at risk. Even as I write these words, it doesn’t feel like my story, like it happened to me. I don’t know how it happened. I am amazed that my brain shut down at that exact moment. But I have been told from various perspectives how I fell down that mountain. As I flew at an estimated 35-40 miles per hour crashing against the rock, airborne at times, my spirit soared away from my poor flailing body.
In hiking Yosemite’s Half Dome on June 6, 2009 with three of my friends, I was having trouble at a point where one of the poles that is placed on the mountain for stability was pulled out of the rock making the cable slack. It began to lightly snow making the path slippery. Also, I was holding my weight up by my arms and my bicep began not working well anymore due to my hands being cold.
Two of my friends were at the bottom of Half Dome waiting for us and when they heard I was struggling, Peter decided to come back up to help. Tricia spoke to a random stranger “My friend is having trouble up there. Can you go up and help?” His name was Rick.
Though I don’t remember this, I am told my butt slammed down first and I began to slide and plunge down the mountain. Apparently, I was screaming as I descended. Rick says I was already falling down before he could reach me and the very first time he ever saw me I was airborne. Peter witnessed a big portion of my fall. My heart breaks to know that Vanessa and Peter and Rick had to witness such an event. In my opinion, it was far more traumatizing for them than for me. Peter says I smacked my back against a pole, did a couple cart wheels, and tumbled down the rock before I was stopped by a tiny crevice of rock that was about 6 inches high. Broken and battered, I laid face down with my right knee up against my chest. Tricia had to borrow someone’s cell phone to get reception and called 911 reporting my fall and that they expected I had snapped my neck.
Rick and his nephew-in-law, Kiley (who happened to be an former EMT) stayed with me for 3 hours as I lay there bleeding and broken while my traumatized friends hiked to safety at the Sub Dome. Many people donated their jackets to lay over me. Someone took my vitals and hollered them down to Tricia to relay to 911. When Vanessa reached the Sub Dome, she kept hearing my brother Anthony’s name in her head. I had told her about my brother passing away a few years before but she didn’t know him personally and I am very surprised she remembered his name. Maybe I had mentioned his name that weekend because it was the memorial day of his death the following day, June 7. She couldn’t get his name out of her mind. So finally, she bellowed out to him “Stay with your sister! Don’t let her fall off that ledge!” She then felt an overriding, odd-for-the-circumstances sense of calm.
Kiley says I came to three times and they had to calm me down to keep me from moving too much. At one point when I came to, I shifted from being face down onto my back. That’s when they knew I wasn’t paralyzed and hadn’t snapped my neck.
Yosemite had sent a helicopter to rescue me but the helicopter was having difficulty getting to me due to the clouds and poor weather. Had Rick and Kiley not stayed with me, I would have come to those three times and possibly continued to shuttle down that rock to the 1000 foot drop that loomed 4 feet away.
Finally there was a clearing in the sky. It was the helicopter’s last attempt as they were running low on fuel and competing with daylight. They touched down and let out the rescue team. Had the helicopter not been able to pick me back up, I would have been transported the 5+ hours down the rocky mountain via a stretcher basket. I already had a broken spine, skull and jaw etc. That would have ruined me. (Apparently, my skull fracture was only a hairline away from causing me to need brain surgery or to have caused more irreversible damage). But the team was able to get me off that precarious crevice of rock, into the gurney and hooked onto the helicopter cable. Jack, a Yosemite EMT, rode with me hanging on the side of the basket 100 feet below the helicopter as it lifted me to a flat meadow where I could be transferred to the emergency MediVac helicopter.
Tricia, Peter and Vanessa gave their report of the accident to the Search and Rescue team individually. Tricia, miraculously, had my parents’ contact information in an old address book she happened to have back at camp and relayed my name, age and information to the team. She was advised not to contact my parents herself. Somehow that information wasn’t properly relayed to the MediVac team so when I got to the emergency room, I was treated, stabilized and put into the Neuro Critical Care Unit as a Jane Doe.
Tricia called first thing the next morning to see how I was and the confusion was cleared. The medical staff called my parents and, devastatingly, on the day of my brother’s passing four years previous relayed to them the shocking news of my fall.
I was in the hospital for a total of one month and one day, in three different hospitals in three Northern California cities. I was in a semi-coma for two weeks. When I came to, I couldn’t remember where I lived, worked or had gone to school. Gratefully, I remembered loved ones that were around me and my dear friends that came to visit me. Within a week of hearing various facts along with being given my cell phone, I remembered pieces of my life. These times will be cherished forever as it truly helped me to recall segments of my recent history.
My injuries included a fractured skull (at the base where the spinal cord enters the brain), a broken jaw (repaired with a titanium plate) and 3 teeth uprooted (they were realigned and have healed), 3 compression fractures of the spine (I had to wear a body brace for 3 ½ months), a fractured rib and sacrum, substantial misalignment of the coccyx (tail bone), severe bruising of my left glute, leg and back, a brain injury including hematomas and bleeding in the brain. I was semi-conscious for 2 weeks and fortunately the amnesia only lasted for about a week or so after I came to. My speech improved with time and therapy and my brain is continually getting better even compared to a few weeks ago. I had lacerations requiring stitches behind the left ear and on the skull, moderate hearing issues in the left ear, double vision, a broken left collar bone that hasn’t properly healed yet and a laceration on the right calf that has healed. I needed to be taught how to walk again and progressed beyond the need for a wheel chair upon being released from the hospital after a one month stay. I was walking with a cane for about 8 months. Now my balance has definitely improved. I was on a liquid diet for 9 weeks due to my broken jaw and lost a considerable amount of weight. I had horrible vertigo for about 3 months which was resolved thanks to my physical therapist using the Epley Maneuver.
I have double vision but thanks to a phenomenal optometry group at Agape Optometry, I have been actively doing Vision Therapy which has proven to improve visual problems after a traumatic brain injury. And I now wear prism lens glasses to regulate the double vision that remains. I trust I will have my normal vision return. My brain is feeling back on track in the last few months though I still deal with sleep issues, mild word searching, spelling and short-term memory issues. I have constant yet tolerable tingling and numbness on the left side of my face, mouth, neck, shoulder, calf and foot. I attend the Brain Injury Center’s bi-monthly support group in Camarillo where I find encouragement. The mild brain injury that I have dealt with is miniscule considering the trauma my brain went through in pounding against the rocky mountainside as I fell.
My body has done an amazing job! I had done a lot of work on myself spiritually and emotionally before the fall and that has helped me tremendously to stay optimistic and keep a positive outlook. I have a strong holistic spiritual connection that is still changing and growing. I am told that while I was semi-conscious for those 2 weeks I spoke with difficulty, in broken sentences of my deceased brother, Anthony. I reported seeing him on the mountain with me and seeing him in the hospital room at my bedside. I know that he was with me and that he remains in my/our presence. There have been so many miracles and spiritual gifts through this experience. I trust I am being taken care of and that I am meant to be alive … I am here for a reason. My healing has progressed amazingly well and as I expand beyond the “healing cocoon” I’ve been in for the last 22 months, I am reentering the world and eagerly opening doors to my New Life. I do believe now more than ever that everything happens for a reason.
Truly a Miracle I Am Alive by Steve Spencer
I collided w/ a tree in Camarillo, Ca. on Carmen Street in Dec. 09. They closed down both lanes of traffic for 3 hours because they could not get me out of the car. After awhile they brought the "Jaws of Life" and tore me out from my Nissan Pathfinder. This took three hours. I sometimes daydream how long three hours is. Truly a miracle I am alive… I layed there a bleeded out to 1 unit of blood. If you look at me I have no facial scars but as w/ brain injuries the scars are not seen. They hide in the deep recesses of your head w/ sometimes outwardly signs of dysfunction. I arrived by ambulance for immediate surgery. Opened up like a fish, the incision was from my neck to just three inches below my navel. My lung was collapsed, every rib that composed the cage was broken, my spleen removed and the liver severed.Most all my blood was gone. The three doctors labored for 3-4 hrs. and then closed me up. I was in a coma for 2 weeks before my eyes opened. I could not remember a thing. A very, very frightening event to understand.
Under my armpit they inserted a tube in my lung to assist in my breathing as well as tubes inserted in my nose and mouth . There I lay 3 weeks in a coma and 2-3 more weeks to get better to start rehab.
Today, after 2 years, I am not well. Although, if you looked at me I could fool you, but if you stay w/ me for some time you will know something is wrong. I seem to repeat myself often because I forget what I had said. Very embarassing. I have good days and I have bad days. The doctor says I will develop seizures which I am not looking forward to. I often walk in circles and I have extreme memory loss. I pay bills electronically and often to the wrong payee. It just kills me when that happens. I just have to remember how lucky I am to be alive and able to drive. My Mother is legally blind and counts on me for much. I am glad that I can help her and she understands my injury. Very supportive and lots of love. She provides me good medicine. I am dizzy at times and short breathed but that is OK. I pray each day to thank God that my accident was not more severe and that he got my attention.
I go to Ventura County Brain injury classes twice a month and it saved my life. I know I am not alone and there is love and help there for me. I find it that 90% of the injured people have the same impairment that I do. Memory loss, lost position, not fully aware of one's daily duties to complete, and the knowing that we are different souls. I am very grateful for what happened to me. I am not bitter because for how would I ever know the other side of the coin. They say, " God plants you where you are to bloom." This is true. I am on disability at 60 yrs. old and grateful that the govt. was finally convinced that I needed help. I hope you can understand that from one day to the next we are living in a world of the unknown. That one event can change your life forever. Be careful and stay safe.
Was King of the World, I Thought by Tyler Sutton
Hi, my name is Tyler Sutton. I am 43 years old and I live in Camarillo. I have been a brain injury survivor since I was 22. It has been a long hard struggle back to a meaningful life.
Like many young men of 22, I thought I was invincible. Things came to me pretty easy back then. In high school I went to the Senior Prom with one girl, but I had lots of girl friends. I was #1 man on the varsity golf team all four years in high school. Fresh out of high school, I sold cars at Paradise Chevrolet and in my eyes, was making big money.
I was king of the world, I thought…
I got in the habit of making poor choices, but I wasn’t worried, because I had the rest of my life to get it figured out.
I went to a party one night, and stayed up most of the night partying with my friends. The next day, having little sleep, I got on a motorcycle for a long trip and only 30 miles into it, I fell asleep to the hum of my engine.
I hit the freeway going 65 miles an hour. I was taken to the trauma center at Holy Cross Hospital in a coma. I had a brain surgery every day for three days as they tried to save my life. I was in a coma for 6 weeks, and not expected to live. I caused my family more pain than I will ever know. I had a long rehabilitation and worked hard to get back to my old self, but that didn’t happen.
My life changed forever.
I needed the court to appoint me a conservator to help me make decisions. Some of my old friends didn’t stay my friend. I can’t drive anymore. I can’t tie my shoes. I couldn’t live on my own. For a while, I self-medicated with alcohol and drugs. I was barely surviving.
Then I found the Brain Injury Center and became a real survivor.
I learned coping skills for my new life by attending the Center’s support meetings. It helped me develop life skills that I have been able to turn important corners and now I live on my own.
I found friends that have a positive influence in my life and who understand about brain injury. I learned that I have a voice and can help others who may not understand the journey they are on.
The big new thing in my life is that the Brain Injury Center helped me get a job. For many years, I worked with Dept. of Rehab. I filled out hundreds applications for work, but was never hired. I had almost given up that I would ever have a job. Through the Brain Injury Center, I now have a job at Steve Thomas BMW. This means the world to me. I feel like I am a man again.
Since my accident, each corner I have turned back to a meaningful life has happened because of the Brain Injury Center.
Remembering to Remember by Jonathan Davies
I always have dreams during my dark hours. What am I trying to remember? When my dark hours end, the light comes and pushes the dreams away.
Sometimes the dreams are hazy; sometimes they are vivid, surreal events I awake from full of fear and anxiety. Although they are not the reality of the awake-world, they have one hell of an effect on the tales I tell and the ability to have my listeners believe them to be true. Often my dreams are so realistic even I cannot determine between truth and fiction. The dreams of my dark hours create memories, memories create beliefs; these beliefs affect how I react to people and events.
So much was lost when the uninvited, crippling trespasser made his way into my life. It is nearly impossible to express the true idea, visions and horrors that are constantly brewing in what is left of this mind of mine. I have gone to many different doctors of all types in hopes of finding a clear pathway through the jungles of my forgotten past, foggy present and, what often seems to be, bleak future. Doctors and therapists offer words of advice, suggestions on how to cope with the losses, encouragement for coming so far after such a severe injury, no one talks about recovery anymore. Now we talk about managing symptoms and coping.
It has been fifteen years since the accident, since the trespasser, traumatic brain injury, came abruptly changing my life. The injury was terrible, the medical intervention was miraculous and my body did a great job getting back on its feet with months of rehabilitation. But, today, like every day, is an up-hill battle through a maze of pretty scary stuff. The memory does not work, I have trouble keeping a schedule straight, I cannot recall even happy events from the day before without reminders. Sometimes I just get tired of it all.
In my mind traumatic brain injury, referred to as TBI, does not take into account that I need time outside of its grasp. I need time to have someone help me sort out the realities. I need time to let go of these dream memories that create frightening, fear-filled thoughts which seem like they must have happened. Whether I am sleeping or awake, chances are there will be no images for me to fall back on and recall the reality of experiences that have occurred. Facts get mixed up with dreams, then dreams get mixed up with fabrications I have put together based on the emotions evoked when I awaken in a cold sweat.
Living with Traumatic Brain Injury, after you get through the coma, the hospitals, the rehab and the therapy, is a never-ending journey of looking for a road that will take you somewhere you can feel wanted, safe and have life with purpose. This last part is the part that is not usually written about in newspapers. No one wants to hear about the heartbreaks and pain that continue long after the happiness of being discharged from the hospital and getting home again.
The information about my accident, the medical intervention, my rehabilitation and my immediate re-entry into home and community life is from the story telling of family members and copies of medical reports over the past fifteen years of our time together. I guess they are all telling me the truth. I have very little recollection of my life between my junior year at Vermont Academy until a few years after my first year at Springfield College. I remember some names of friends. It is maddening to hear the stories of my life from everyone but myself. How could I have jumped from a plane and soared through the sky without ever remembering? How could my Grandpa, my fishing buddy, have died on my twentieth birthday and I don't recall any pangs of sadness? What else happened that I will never imagine?
Like the majority of survivors of traumatic brain injury (TBI), I was involved in a motor vehicle accident when I was a young man. After my first year of college, I was riding my prized Honda motorcycle on a beautiful July day in the small town where I lived with my parents. Speeding along the country road, the sun on my back, I never saw the car making a left hand turn crossing my path. I hit the car as it started to turn into my path and flew sixty five feet through the air. I don't remember any of this but I am told this is what happened. I was flown to the local trauma center after being treated at the scene by the volunteer ambulance team. I was in intensive care, not responding to anything except the sensation of choking during times I was suctioned to keep my airway clear. Then I would choke so hard I would lift my two hundred ten pound, six foot two inch body right off the bed as I gagged for air. Otherwise, I 'slept' as a machine did my breathing for me.
The recovery from this brain injury took everything I had. My brain required energy to keep functioning and healing, I dropped forty pounds in a matter of a few weeks and only after more than a month did I open my eyes and begin coming out of the deep coma state. I was fed by a tube surgically inserted into my stomach and my breathing was made easier with a tracheotomy tube inserted through my neck. Most of us survivors have the wounds left from this time of medical intervention. We compare scars to see who had the better surgeon.
In my damaged mind I am left to accept a life tangled with stories of how miraculous my recovery has been while I will never have any recollection of the pain I caused myself and my family. The mental pain goes on: the 'memories' put into my head by the stories I am told by other, the things doctors tell me each time I go through another examination, and the news articles I read about someone else 'recovering' from TBI. It is so strange not to know what is reality and what is fantasy. Did I have this experience I am reading about? Did people tell the truth about what happened?
Like many of those with serious brain trauma, I ended up with memory problems and seizures. We all share some level of an array of symptoms of dementia, depending on the areas of the brain injured: cognitive problems, irritability, impulsivity, insomnia, fatigue, and apathy. Many of us struggle with depression and anxiety, some with compulsive disorders, and regretfully, some have suicidal thoughts and attempts. As life goes on I realize more and more how much my impairment has affected my life. I worry about what it will be like in years to come.
Most traumatic brain injuries occur in children between the ages of 0 – 4 years, and then youth between the ages of 15 and 19 years. Males are more likely to sustain TBI than females. Certain military duties increase the likelihood of TBI. The brain is most often injured when an outside force causes the brain to move inside the skull; or the brain can be injured when the skull itself is broken and the brain directly hurt. The brain moves around inside the skull like Jello, except is attached in places. Tearing, bruising, bleeding and pressure from swelling affect the brain in different areas. Depending on the degree of damage and the areas damaged, the survivor will experience numerous life-long deficits which may never heal fully. Improvement in condition occurs for many years after the brain injury, but recovery in the sense of being like 'before the injury' is not going to happen.
Each year 90,000 American life through injuries that leave them permanently disabled with brain injury; 50,000 die from brain injury each year. Today, 5.3 million Americans face challenges resulting from brain injury. The numbers of Americans with brain injury are increasing with the Global War on Terrorism as our soldiers return home to begin life anew with the effects of brain injuries sustained in battle.
An In Institute of Medicine report edited by Eden and Stevens stated in 2006: …many people with TBI experience persistent, lifelong disabilities. For these individuals, and their caregivers, finding needed services is, far too often, an overwhelming logistical, financial and psychological challenge. Individuals with TBI-related disabilities, their family members, and caregivers report substantial problems in getting basic services, including housing, vocational services, neurobehavioral services, transportation, and respite for caregivers. Yet efforts to address these issues are stymied by inadequate data systems, insufficient resources, and a lack of coordination. TBI services are rarely coordinated across programs except in some service sites. Furthermore, in most states, there is no single entry point into TBI systems of care.
Now in order to keep going, I need a medical-alert pill dispenser to remind me to take medication to stop my seizures, I take pills to help me sleep without the dark, overpowering dreams, and, infrequently, I need antidepressants to get me over the rough times. I write poetry and prose to keep myself thinking and using my brain. I love to get out in nature. I enjoy playing black jack at the casino. And, I look forward to getting a part-time job as soon as possible. Like everyone else, people with TBI want to be included in life. Many of us need help with transportation and help organizing and remembering. But we do remember. We remember people who are helpful, caring, take time to be with us. We remember how it feels to be appreciated.e TBI survivors do have problems that change our lives immensely and we know that we must be difficult to be with. Our friends fall away; we cannot keep up with their lifestyles. We have problems remembering day-to-day events and appointments, even new faces. Solving new problems takes us longer. We get upset easily and are prone to angry outbursts, but we cool down quickly and often do not remember what we said or did. These changes in behavior and our difficulty in reading what others mean or need can cause us problems in relating to people. And, we need support to get out into a meaningful job or volunteer position that gives us a reason to get up and out each day.
Professionals, survivors, and family members are trying to piece together services to support those of us who live with TBI. A full continuum of care addressing all the needs of a person with TBI is difficult to put together. Yet, brain injuries are the most prevalent reason for emergency room visits. More and more people are living after sustaining very serious brain injuries. Getting people through the first weeks following their injuries is not enough. Having acute rehabilitation available is a must. But, getting people through the years of living with their injuries with dignity and care is what is needed.
Remembering is difficult for TBI survivors. We all joke about our memories, then we tell each other about our new watches with alarms, new medication reminders, and talk about the food and weather. We remember the 'normies' who used to be our friends. Then we try to remember what we did at our last support group meeting. Remembering to remember. Remembering we count. Reminding people to remember. There is no full recovery from a serious brain injury. There is life after the injury. Sometimes it is just as well not to remember the things we have lost.
I still remember how it felt to fly through the wind on my bike and motorcycle. I have nights when the dark thoughts do not catch up with me. I try to remember there may be more for me in the future. I try to keep trying. Maybe in the future each person with TBI will have an opportunity to live a life that is meaningful and rewarding. Maybe someday policy makers and the public will understand what it is to live with what is left after the crippling trespasser has come.
What I Can Remember by Lee Staniland
It was June 11, 1978, in Somis, California, so I've been told. Because you see I have no memory of what happened that day.
I know that I had just gotten back from Arizona where I became the godparent to my young nephew. I had brought my mother back with me, and for Mother's Day I had taken her to Solvang for the day. I also remember taking her to the Burbank Airport for her to go home. I remember all that very clearly, but the actual day of the accident, I remember nothing.
I have been told things so many times that they now have become my memories. I was told that I had been outside washing windows when my husband left to go somewhere. I was probably upset about something or someone because that is the only time I would wash windows.
I put my dogs up in their kennel like I always did when I rode my horse. My husband came home and could not find me anywhere until he looked out in the pasture, which was in the front of our house.
He noticed my horse with her bare-back blanket on and a hackamore hanging from her neck.
Our pasture had walnut trees on it and he found me unconscious under one of the trees. He told everybody that he had always told me not to ride when I was alone.
He gathered me up and took me to Camarillo's Emergency Room.
They sent me to Ventura's Community Hospital where I stayed in a coma for six weeks.
I have been told stories of things that happened there, like they left me in front of an open window one day, so I caught pneumonia as a result. Another time they kept giving me dilantin to control seizures, and I was allergic to it. Because of that, I was scratching myself so badly that they tied my hands to the bed so that I could not reach any part of my body.
I guess they must have done most things right though, because I'm here today to tell you about it.
I came out of the coma 6 weeks later and was sent up to Santa Barbara Rehab where I spent another 2 or 3 months.
That was where I got my first memory that stuck. I was in a room all by myself, and I could hear people out in the hall. I had no idea were I was or why I was there.
I have memories of little fragments of that time like being with my family, my sister wheeling me around their hotel pool, another sister taking me for a car ride around Santa Barbara and lunch at Micky D's. Funny the things that you remember.
My husband took me out of the hospital to spend the day in Solvang for our first anniversary. That was a super memory. I got to be out of the hospital for a WHOLE day. Wow!
Trying to walk down the hall with a walker and not doing so well.
The day my brother hid the belt that the nurses had tied around me so that I didn't fall out of the wheelchair every time I thought that I could stand up on my own.
A great young gal that was supposed to be with me while I cooked a meal that I had chosen. There was no way that I could do that yet, so she and her boy friend cooked and ate a steak dinner or whatever it was that I had picked out to try to cook. It was so much fun just watching them enjoy it. It still puts a smile on my face whenever I think of it.
Then there is the memory of crying and pleading with my family to take me home. They all felt so bad and wanted to do it, but they knew I wasn't ready so they would leave and I would just fade out. That is the good thing about not having a good memory. You forget most things that upset you. I remember things a lot better today, but there are times, especially when I am tired, that the old memory just doesn't work the way it used too.
Well, I finally got to go home. I was so happy.
My parents had moved down here from Sacramento to help take care of me. You have to relearn to walk, talk, dress and feed yourself. My old self was a very head strong person, but I just let everyone help me with life. It's amazing how your mind protects you from yourself.
After awhile it was time for my parents to leave. I loved them so much but my parents were smothering me and I wanted MY house back.
I know my mom was so afraid to leave me to handle things on my own, but it was the best thing for me.
I want to tell all you caregivers a secret. I know that it is a lot easier if you just do everything for us, but please don't. I believe that is how I got to be as good as I am. After they left I had to do everything myself, from taking care of a big house, to caring for cows, chickens, dogs, cats and helping to run a carpet supply warehouse. I sold my horse because I could not ride her then. Oh ya, I just remembered that my rooster would chase me whenever I would go out to collect eggs. They always go after the weakest thing and that was me.
I forgot to mention, we were also still in the process of finishing the house we were building and living in. Talk about crazy!
I am so thankful that the part of my brain that reasons things out, was not damaged completely. Don't get me wrong. I know that there are times when I get a little crazy about things. That maybe other people that do not have a brain injury would handle a situation a lot differently, but I do the best that I can.
I am now re married to a man who does pretty well for someone who was not with me from the beginning. I think he has learned a lot from me and I have learned a lot from him.
When someone says to me "Oh your head injury must not have been very serious," I would like to shake them. I had to work very hard to get where I am. I had Someone looking over me and He decided that my time was not up yet and I have something that I'm still suppose to do. I believe my purpose in life is to be with my fellow brain injured and to give them and their families hope.
My Story by Mia Harney
My traumatic story starts on Sunday, March, 15, 1987 when in response to a very late snow storm, Gerard, my father, & I went across the Delaware River to Montage ski resort in the Poconos. I had a snow day on Friday, March, 13. I had taken Bunny Slope ski lessons that winter, so my choice to ski on the expert trail was asking for something bad to happen.
As it was so late in the season, there were numerous flaws on that particular ski run. The snow fences did not reach all of the way to the new snow level, there were only mistakes to be made. I made a successful run on the slope earlier that day.
In my last ski run, I hit a patch of ice, which caused me to spin out of control and slide under a snow fence. As I was sliding down the mountain, the back of my left ski went into my right calf, requiring four stitches because I was very jumpy in my transport from Scranton to Delaware. My life was saves by the proximity of Scranton Community Medical Center to Montage.
I went right into surgery after the Life Flight helicopter brought me to the hospital. I was extremely lucky that my particular neurosurgeon was on duty at that time. My right lung was punctured, but an endotrachial tube was put down my throat right away in the preoperative area. My neurosurgery was lengthily, but I was in a coma so I didn’t know how many hours elapsed.
I was comatose when I was transported from Scranton to A. I. DuPont Hospital in Delaware for three months of rehabilitation. I came out of the comatose state very quickly at DuPont, so my course of therapy could begin. I was in everything from speech, school, Physical therapy, Occupational therapy, but I had to hold off on swimming until the stitches came out of my right leg. On my first weekend home, my pediatric nurse practitioner mother cut the metal stitches out of my leg. She had to explain the extraction of the stitches when she brought me back to Delaware on Sunday evening. I am glad that after all of these years that I did not have plastic surgery, because the scar has disappeared. I was attending school so prodigiously that I did not have to repeat the sixth grade upon our move to California. I was much in keeping up with my school, because I went to the Spring Formal and was discharged on the last day of school.
A little more than a week after my Friday, June 19, 1987 discharge my family and I moved to Rancho Santa Fe, CA just up the street from the riding club, which will be important in the next part of my story. The doctors at Dupont okayed my riding given my excellent recovery from the skiing accident.
My riding instructor soon suggested that I half-lease a horse from another of the members. I was soon paired with Kimee, who was owned by a girl who lived down the street from me. I advanced in my lessons to about to be taking lessons with another trainer at the club when another head injury befell me.
In early December of 1987,I was just back from a volleyball tournament in Burbank, where I was the statistician for the girls volleyball team at my school. I turned Kimee out before I groomed her, tacked her up and went on a trail ride with another of the club members. It was a stormy day.
We went on a trail ride down neighborhood barrancas, which was not the wisest of ideas. I had my horse running on the trail in the thought that this would help her work out any pent up energy. I should not have had her running, because I was thrown, injured my head and went into a month-long coma. My riding companion went back to the club, but did not tell anyone that I had been thrown. The club manager called the sheriff’s department, so there was a helicopter search for me.
I was flown to San Diego Children’s Hospital for surgery and the stay of my one month coma. I went into therapy at Children’s Hospital thereafter.
My parents took me home from Children’s Hospital for rehabilitation. I was left handed, but I developed an intention tremor in my left hand from this accident. I still have poor lefty handwriting of my youth.
I completed the seventh grade with the help of a neighbor as a tutor. I went into the eighth grade in the fall, but was only there in the morning for the core academic classes.
The next year, I went to high school, but needed to change schools because I could not fill out the scan Tron final exams. The following three years of high school went well, including the SAT.
I had to complete my associate’s degree at Palomar College, before transferring to the University of San Diego to complete my bachelor of arts in anthropology with cum laude honors. My Mother, who died of cancer in 2006, was very supportive throughout my college years. I spent the next year looking for a job. I was desperate enough to ask my attorney father for a job as a paralegal at Cozen O’Connor where I worked for ten years.
I had my third accident in August 2009 when I was riding my bike to the starting point of the San Dieguito Half-Marathon. I was hit by a car by a driver who may have been looking at her cell phone. She had limited insurance, but I was able to make a recovery thanks to an excellent lawyer in San Diego who was a friend of my father.
My father, who retired from Cozen O’Connor in 2012, is an active golfer. He can now play golf more frequently, so he can improve his handicap. He is sometimes away at his condominium on Maui between rentals. There is a lot of golf in Kapalua; as well as the ocean for snorkeling and the proximity to Molokai.
I moved to the Banner House in Ventura October 2010. I now have to make choices for what is next in my life, because I am actively pursuing advancing my anthropology degree. I can work for a professor on their archaeology site, just like I dug at the Presidio in San Diego for Dr. Williams. I want to concentrate my life on achieving goals that will make a great deal of difference in my future.
The Day of the Accident by Bernadette Lyons-Sales
That morning started with memories at Santa Monica Beach, riding my bicycle to Marina Del Ray and back, enjoying my children at the beach and relaxing in a Jacuzzi. When I returned to Ventura with my children (10 and 7 year old), I stepped out of my vehicle and was struck down by a truck. When I woke up from my coma, I was in pain from a skull fracture and many other injuries. I was so confused. I went from bed ridden to a wheel chair, to four-pod walker, to using a cane. It took 5 long years of my life to plateau.
Recovering in bed, the darkness was my friend, because light and sound were my enemies….the migraines and severe pains associated with it were excruciating. My 10 year old daughter, Angela, became my caregiver and I became like her daughter in a reverse role of responsibilities. She helped me live day to day with my memory deficit and disorganization, especially when I would lose my keys, locking myself out.
I did not get the breaks that many other brain injury survivors had as I listen to their stories at support groups. In the beginning…others had better resources, such as money, family and friends to support them. After my injuries, I was rejected by the very loved ones who thought their gifted daughter made poor choices. I needed help making choices! Eventually, with help, I realized they simply did not have the inner resources of patience, kindness, education and tolerance to deal with my injuries…”THAT is a hard pill to swallow!!!!”
I am not one to feel sorrow for myself. From that point on I realized I was in this struggle on my own, until I found BIC.
When I meet new people…after a while…they are forgotten. Unless I spend interactive time with you over and over, you are long forgotten. For the people out there, that have experienced this with me, like Dotti (point at her), I apologize. “We often laugh about it together.”
It takes time to process things in my mind and there are many times I have difficulty articulating my thoughts, especially after a busy day.
It takes me so much energy to talk, that I often only nod my head “yes,” and mouth the word “Yes” because my brain is so tired. There are times that I begin a sentence and stop mid-stream–I have forgotten what I wanted to say. Moments like this are frustrating, but I am compelled to move forward.
Living life with a Brain Injury takes a lot of gumballs, something you “Normies” (people with no Brain Injury) cannot understand. Gumballs represent the energy it takes for our brain to process.
Sleep is the best way for a survivor to replenish energy in the brain.
For example, recently after volunteering at the BIC office making my reminder calls for 5 support groups, I went home, ate lunch and “passed out” for over 2 hours. My daughter woke me up when she stopped by after work. I fell back asleep like a baby that evening, my tired brain needing much more sleep; the exhaustion can last for days. But in the end, I am rejuvenated.
In my recovery period, I called some of my old college mates. I told them “If this is what average feels like I feel sorry for you guys.” They recalled me before my injury–having a photographic memory and acute auditory abilities–remembering mathematical and scientific formulas in the past was…my forte. Because education was important to me and my family, I planned to get my degrees, with all the alphabet soup after my name. However, my brain injury closed many doors, my future changed dramatically. Even though I never earned the letters after my name–I have survived!
“Live for what today has to offer and not what yesterday has stolen.” These are words I have learned to live by.
I celebrate my life as a self-advocate and survivor. I want to make a difference in giving both survivors & caregivers COURAGE to put the puzzle of a Broken Life together. Each morning I tell myself before I go out the door, “Bernadette, you are never fully dressed until you put a smile on your face.” I live daily with chronic pain, but I function, by the grace of God.