The Brain Injury Association encourages people to share their stories with others. This blog page was developed to offer people a means of sharing their stories with others. The notion that each brain injury is different is still as true today as it was 20 years ago. However, there are lessons we can learn from the experiences of others. Hearing the stories of others can educate, inform and inspire. We post the stories without editing. The stories are yours. We reserve the right to not post stories with profanity.
That is why we developed the Personal Stories page of the Brain Injury Association website. We wanted a place where people can share their stories, and where people can comment on stories as well. We do have a few simple ground rules:
If you would like to share your story– please send it via e-mail to us. We cannot guarantee that every story will be posted. We will try to post a wide range of stories. We cannot post videos or pictures. Please just e-mail the story.
Posting the story here does not keep you from posting it elsewhere. The story is still yours. Our site is a way to share it with others.
If you wish to share your story but are having trouble starting your story, there is a guide developed by a group of people with brain injury. It is meant as a way to help you think about what is important to share in your story. You can download the guide here.
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Hello, my name is Ryan Alex. On May 12th 2001 (Mother's Day) at the age of 16 I experienced a severe tbi. I wrecked a motorcycle doing (from what the police said) anywhere from 75-120mph head on into a ford f-550 service truck. I was in a severe coma for 3 1/2 weeks and literally died 4 times throughout the initial hours/days in the hospital.
I was in the hospital for approximately 4 months total. Including the inpatient rehabilitation center. I had to learn EVERYTHING down to tieing my shoes but for some reason maintained a two year college level reading ability....i have a hard time remembering much of anything before that wreck happened to me, except for triggers that once in awhile t bring back memories. sometimes I wonder if they are actual or fabricated by my brain. Because a lot of times my friends or family don't even remember them happening.
I personally lived through this life altering event. I had a girlfriend at the time of the accident that dumped me soon after because "I wasn't the same person as before the wreck" I lost ALOT of "friends" because they weren't sure how to act around me, or other various reasons they all came up with. I suffered from severe depression for years. If I don't wake up in the morning with something hurting......something is wrong....I've also been through 16 major surgeries involving bones I've broken ( getting hardware installed and removed) and that is not counting all of the cosmetic surgeries I have had to endure.
I can't even begin to explain how frustrating life in and of itself became after my bike smashed into that truck. I felt like nobody understood me, like I was going to be alone my whole life afterwords, because in my mind...I was some freak and I hated myself for being who I was. I could never see that I was still me due to the fact that coming out of that coma. I didn't even know who I was or who I was supposed to be. I tried so hard to be the Ryan I knew. A lot about me did change, and I hated it. I hated it so much that I tried to end it all for myself twice (unsuccessfully). I just couldn't handle being so "different" and I didn't stop to think...how "different" could I be when I had absolutely no idea who I even was before the mishap.
I cried for God, I plead with him, I screamed at the sky in tears many a night trying to figure out my purpose. But in all reality of the situation. I never had taken a step back to look at things and realize that maybe, just maybe. My purpose wasn't in my hands at all.
It is now 9-22-14 and I am still here to tell you that recovery has been very long and difficult...I still struggle with anger/temper issues as well as impulsive decisions I make without thinking things all the way through before I move forward with the decision. I am a single father at the age of 28 raising a beautiful 8 year old son, I have an associates degree and am working a job that brings in enough money to comfortably get my family by from year to year. Now, with that. I am by no means trying to brag or flaunt about my success but rather provide inspiration to victims of tbi and families of tbi victims showing them that everything can work out to be ok.
With my personal tbi, I had what you would call a subduralhematoma with my brain hemoraging (bleeding) inside my skull with no room to expand due to it being a closed head Injury. The doctors put a drain into my scull to relieve the preasure until swelling and bleeding subsided. I still have a large problem relatively often with my short term memory but it has improved over the years and I am still at high risk for having seizures. (Haven't had one yet) but in closing, If you are a victim of a tbi or family of a victim of a tbi (traumatic brain injury) reading this comment. DONT LOSE HOPE!!! DONT GIVE UP!!!! PERSEVERE THROUGH IT!!! It may not be the end all be all! Everything happens for a reason!!! You may never understand why,so don't even bother wasting your breath asking yourself that over and over and over. Just see it through. I hope everything works out for you as it has for myself.....and don't ever doubt the ability you posess to see it through to the end. If you do,say a prayer! I will say one with you! I'm sorry you have to/are going through this. Either way you look at things...it will all work out. God bless you!
This is my truth. I have an injury that you cannot see or even begin to imagine. How I’ve learned to manage on this planet is my story to share with others and a gift to you. I will take you on a spiritual and personal healing journey - all done without a brain working properly. My story includes how I managed to not give up my role as a Mom, to have a boyfriend, and to even be an Infinite Being in the world today. I share how I struggled to feel whole and complete as me with this injury and feel worthy as me. This is my story.
On a rainy work day in 2003, April Fool’s day, I drove my son to Montessori school not knowing or expecting what was coming my way. Whip lash so severe I broke teeth. The head shattered dramatically. The other car hadn’t even put on its brake to stop. We weren’t moving when the impact happened. All I could do is look around, and see if my son was okay. I asked the woman to please refrain from cursing. In shock, I took my son to school, and went to work. A few hours later my body seemed to be shutting down on me. Systems were not working, so I had to leave. That day, I had no idea I wouldn’t ever be back as me again.
So that people could understand what I was experiencing, I would tell people that I couldn’t explain where recipes. For at least a year, the doctors could not explain what was happening. My spouse at the time grew angrier with the increased responsibility for home and child which fell to him. My body was in terrible pain from head to toe. I could not care for me or my 3-year-old, Isak. It wasn’t till I met a doctor who explained that I had Mild Traumatic Brain Injury, that I began to make any sense of what was happening. My full-time job now was to fix me, to get me back. Or so I thought.
In 2004 my husband left. I felt terrified about how I’d make it. I didn’t know that I needed him to go, for me to experience less stress. I had outside help to clean and to play with Isak all the time. At one point I sat on the kitchen floor with the pots all around me, and cried praying for a recipe to come back to me. The steps to make a single dish had left me. How was I to survive I’d cry. I’d continue to try to get me back with speech, occupational, and physical therapy multiples time a week. I’d see a vision therapist. I tried vocation rehabilitation. I tried all of these and more, hoping to get myself ready to be work again. Yet life had another plan.
Two years later, 2005, I got the okay to try to back to work. But another accident happened! Isak and I were on our way to the Zoo, and the tire undercarriage of another car shot like a rocket at my driver’s side door. What was God trying to tell me? Had I done something wrong, or got off track? What else did I need to deal with that I hadn’t before? The parts I’d tried to hide? I went to a psychic who saw these crashes as wake up calls for me. I really felt like I was being punished.
The possible time for recovery after the first injury was 9 to 12 years. After the second injury, doctors couldn’t predict recovery at all. Self esteem and confidence were difficult to feel, when I felt I lived with nothing to give. I started to find my value in being a Mother: my purpose was to be here for Isak. I knew that I had personal strength. I’d overcome in the worst of times during childhood. As a child I’d dealt with invisible injuries that no one wants to know about, and I’ had pulled myself up when my inner light went out. Now I’d get the chance to turn it back on once again.
Physical movement impaired my functioning. Stimulation hurt. Slow registration my life became a practice of remaining at peace and free, no matter what life brought me. I had a teacher who taught me I still had value doing nothing. We’d work on Presence once a week. He suggested I try energy
medicine. It is in energy medicine that I learned to be clear and present for humanity. What I didn’t know is that my intuition too had grown and I heard messages loudly. The outer world posed lots of challenges for me, yet guided, I always had God looking out for me. Then one day I saw a photo of Byron Katie in a local paper. Her book lay at the office of my teacher. One sentence in Loving What Is changed this life that I live. I no longer had a decision to make that I had faith in the impulses I get every day. Thus began my guided life, and I went from disabled to enabled in a blink of an eye.
I now live with an inner security that everything is fine. Not that it’s anything like the majority of persons’ lives, but this is mine. I wake when I do. I get ready when it feels I’ve got the energy to. One doctor described me having ¼ of the 4 energy stores that most humans have. So I’ve become hyper aware of what is at risk of draining me, when I have no energy to spare. Emotional reactions, visual overstimulation, and audio sensitivity can all lead me to a place of needing to recover for hours, days and weeks, depending on how badly I’ve gone over my threshold.
Physical activity too can take the whole thing. I struggle talking too. You can imagine that my worst challenges are grocery stores of any kind. I’ve shopped with my Mom recently, but before that had groceries delivered. At age 43, how bizarre it is to have to live in a constant state of looking out for myself.
Yet, I can see the gift in this for me. Not ever able to hurry lest I become impaired immediately, has me going at ease, and it’s lovely. How abundant I feel, when I hold space for humanity, and they love my level of understanding. Nine years of cloistered living has given me time to review my life and to return me back to myself another time.
I’ve attempted to get Social Security for 7 years, but haven’t. I’ve been denied twice. From the perspective of the government Higher Authority, I’m seen as “normal” looking. They assume that I am normal by what they see. I can’t prove it, so why could they believe me, humans ask me. Would
space age looking glasses make me more believable to those judging? I looked like a frog with the glasses I was given to help me. The doctor learned from me that periphery is seen not only by looking up and around, but also by facing the ground. He sees me as a poster child for this. Great, science is still learning about the brain. Having to exist on Food Stamps only has made life remaining faithful very important.
My eyes are impaired at night. I don’t drive on interstates most of the time. I try it randomly, and wish I hadn’t given my brain’s slow response to visual stimuli. I made the mistake of insisting on getting to see the Chopra Center, so I drove to it with 6 lanes of traffic. I put my own life at risk, because I didn’t have the motor skills to drive with the needed speed and accuracy. Those closest to me have had to learn my needs. They all forget at times, but it’s up to me to speak up and to advocate for my needs. My Mom now notices noisy places, and doesn’t mind alternative suggestions. My son questions me, not believing me completely. Yet he also sees I’m doing my very best to meet all his needs. His playful nature was a bit challenging at earlier ages, but we’re making life great as we go moment to moment. My boyfriend was kind most of the time, yet he was not wired to catch subtle clues, so I suffered unknowingly trying to keep up with the one I loved.
I don’t feel pain when I should. I get bruised, burnt or even lose toe nails from not getting sensory registration on time. I have to be extra careful or not cook if I’m over my threshold. I can be physically shaky. When I am, I should not work with knives or drive. My issues can be highly inconvenient for some, but I try to remember that is their problem, not mine. Apologies for lack of tolerance and compassion come occasionally. I get to love me just as I am right now, even if my caring for me bothers another human being. I can no longer appease another by sacrificing myself, my energy, or my time. Having a brain injury has led me to treat myself better. My landlady is supportive: she tries to not judge how I spend my life. She does her best to not assume I should be trying something to improve myself. Day after day for 8 years I’ve been living here, mostly alone, mostly indoors.
I’m working to become more powerful than ever before, stepping out for the resources to come, even if I risk you judging. I’ve been told repeatedly that my life story is not easy to hear. My Mom even asked what person would want to hear about my life, given that society hasn’t wanted to speak of such things until now. But we’re in a time of no more secrets. Why can’t I be just as proud of what I overcame as anyone else who’s made her way? I believe in Integrity, Honesty and Total Transparency, and I’ve committed to following my knowing. With God holding my hand I pour on to the page the horrible ways I felt about abuse, abandonment, and an affair. Each time I’d have to work my way back to feeling right with God when I felt undeserving. Like I told you, I’d overcome this obstacle once before; I have dealt with invisible injury hidden within. I was born for Greatness; this hidden stuff won’t be pushed down any more. I pray to understand which for qualities I need to embody Peace and Freedom in the midst of what’s happening. Compassion, Love, Abundance usually come up, yet I know what I really want more is Purity. See what it takes to get me that… Grace.
How would you live without a brain to help out? I’ve learned to trust in the unknown, the uncertain and the fearless aspect of us. I chose to completely surrender to God my life and to follow the unseen feelings I receive. I wake each day not knowing what’s happening. I leap only when I feel the “go” impulse pounding. The unimaginable synchronicity is only possible when I listen. I trust that all my needs are met. The chaotic state ends and arrows of hate don’t get in. The God of me cares about life, the living, and deeply loves everything. Already perfect, nothing to fix, to get, to improve. It’s Fear or Bliss. I chose Bliss.
By Cheryl Rask
I never told anybody about my motorcycle accident in 1985 that left me permanently disabled. I never told anybody because it almost crushed my psyche and my spirit and made me feel ashamed.
The accident affected most of my cognitive functions. It stifled my personality, and my ability to express myself. My potential for growth and development was interrupted. I suffered a permanent disability after I hit a Safeway shopping cart on February 2, 1985. The cart was left in the middle of Bay Street one night, while I was driving 30- 40 mph without a helmet in San Francisco’s Marina District two miles from the Fort Mason Youth Hostel .
I suffered a contrecoup injury to my brain when I hit the shopping cart. This is when the brain richochets off the opposite side of the skull upon impact with a surface. The left side of my body became paralyzed. I sustained multiple skull fractures and significant damage to the sensory and cognitive areas of my brain after it bounced inside my inside my skull like a pinball on impact with the curb at Bay and Laguna. I was knocked unconscious and was comatose for 3 weeks. My memory was erased from the night of my accident back to August 1984.
The impact of my head against the curb hindered the cerebral spinal fluid the brain floats in. The fluid cushions the brain when a person falls or bumps their head. Fortunately, the speech and language areas in my cerebrum, in the upper part of my skull, were unimpaired.
Unfortunately, the curb at Bay and Laguna streets left a small hole in my cranium after my left brow struck the curb. I landed on my stomach that now has a faint red vertical scar. A Good Samaritan parked in a red van, who spoke little English and could habla Espanol, saw the accident. He phoned 911 from a Chevron station at the corner of Bay and Laguna, where I landed.
An ambulance took me to San Francisco General Hospital, where I was strapped to a gurney and immediately given a CAT scan of the brain, which is a detailed x-ray. Immediate medical attention was necessary in a case like mine, because I sustained head injuries and would have died if the ambulance had not arrived as soon as it did.
When the doctors first examined me when I arrived at San Francisco General, they thought I was bleeding internally and cut my stomach open after the CAT scan was taken.
I was taken to the operating room after the CAT Scan where my neurosurgeon Dr. Griffith Harsh (who was a big fan of Star Trek) looked at my supine form, scratched his forehead and said ‘’He’s dead, Jim, but we have the technology to effect repairs on this biological unit and put in some overtime.’’
The other neurosurgeon, an aspiring singer, picked up a scalpel looked at Dr. Harsh and began to sing a line from Mack the Knife ‘you know this sharp blade has such teeth dear, and it shows its pearly whites.’’ The neurosurgeons used a cement cutter and various Black and Decker power tools to make five hours worth of repairs to my brain.
They cut open my skull and evacuated the area of my brain that was bleeding because a subdural hematoma was forming on an area of my brain that swelled up. They wanted to prevent my brain from swelling up so blood clots would not form- YIKES! I spent one month in intensive care in a comatose state, without a map.
When I came out of my coma at San Francisco General Hospital on February 21, I was transferred to St. Mary’s Hospital in the morning on February 22nd where I lived for 3 1/2 months until my discharge in May. I was placed in a private room on the 4th floor which is the area at St. Mary’s where patients are rehabilitated from serious injuries- like strokes, and head injuries. I received intensive rehabilitation in physical, speech and occupational therapy. My room faced the hospital parking lot across from Golden Gate Park next to Stanyan Street.
I remember sitting on my bed the morning of my transfer. I began staring at my new living environment. I felt like a stranger in a strange land. White walls to the left and right and a blank television screen. The most exciting thing about the room was the window which I stared out and watched traffic. Where are all my books?
I began to feel claustrophobic. Most of the space in my room was taken up by the bathroom. There was a sign on the wall outside my room above the door which had a picture of a human body in the act of falling down, arms and legs making flailing motions. The sign alerted nurses and hospital staff that the patient in the room had balance problems. I didn’t have the balance skills to walk to the bathroom without falling down. I had to push a red button on the side of my electric bed to call the nursing station and have a nurse escort me to it. I felt like a small child dependent on the needs of others to perform basic functions. I became filled with feelings of frustration and helplessness. My disability was something I was aware of but couldn’t see or control.
Music became important. Whenever I felt uncomfortable during my therapy sessions lines from songs I liked would pop into my mental jukebox Where do I go from here to a better state than this?” popped into my mental jukebox as I was sitting on my bed waiting to begin my therapies on my 1st day at St. Mary’s.
My thoughts were interrupted when my primary care nurse Karen, one of several I had at the hospital walked into my room. She asked me what I wanted to eat for breakfast. When I saw her I thought ROOM SERVICE! I was really hungry after being in a coma. I looked at her and placed my order. “I’ll have eggs Florentine with bacon and a glass of orange juice, can you also bring me the New York Times,I want to keep abreast of current events, I have a lot of catching up to do.’’
By the look on her face I realized I was in the wrong restaurant. They didn’t serve Continental cuisine here. I settled for 2 scrambled eggs, a bowl of Wheaties, and glass of Minute Made orange juice made from concentrate. When I had realized what happened after regaining consciousness, it felt like someone had played a cruel joke on me.
My daily life fell onto a routine after I was admitted. My therapies would begin after I got dressed and had breakfast. My day would begin with speech therapy, then physical therapy followed by occupational therapy. I would usually wake up at about 7am and use the bathroom. Karen would come in and ask me “ Do you feel like having a bowel movement, I need to give you a suppository?” That was the1st time I’d ever heard the words bowel and suppository mentioned in the same sentence together in my life. When Karen took out a latex glove and slid each finger into the glove, I instinctively knew what to do, bend over in a most undignified position.Then she would insert the suppository, a drug delivery system made of plastic that was shaped like a bullet into my rear end.
The suppository contained a stool softener. After removing the suppository I would brush my teeth and step back into my room where clothes were laid out on the bed. My occupational therapist Jolee would come in after Karen left and help me dress.
I had limited use of the left side of my body and getting dressed became a challenge. I put my clothes on one side at a time, beginning with the left pant leg then my right pant leg then my left sock and right sock. I would put my left arm in a t-shirt 1st then push my right arm through the other hole. I usually wore a t-shirt or sweat shirt over my pants while I was at St. Mary’s. A shirt with buttons became a spatial issue, since the parietal area which allows the brain to recognize form and shape was impaired. I had difficulty lining up the buttons so both sides of my shirt matched. Getting dressed was time consuming. The easy part was putting my shoes on. They had velcro straps not laces.
I learned how to compensate for the weakness on the left side. I put my right shoe on first since my right foot was stronger and was more flexible than my left. Then I would use a shoe horn to slide my left foot into my shoe. I stood in front of a mirror in my bathroom so I could see where to slide a belt through the loops when I wore pants.
The damage to the right side of my brain caused a whiplash motion when my head smashed against the curb, my brain was jerked forward against the inside of my skull. The impact caused a weakness to the left side of my body, a condition called hemiparesis. This affected my balance and coordination. I lacked the ability to use both my hands to dress myself. My fine motor skill movements i.e. using a fork and knife grabbing things like shoe laces and playing the guitar which I could do before my accident were also affected.
I looked down at my body the morning of my transfer. My left arm hung lame on my body, frozen to my side. I brushed my right hand over my forehead to brush the hair away, but there was none. My head was shaved, my hair grew back slowly. All I felt was beard stubble. I would not be able to play chess, write to my congressman, protest or play ping -pong.
I received physical therapy immediately after my transfer. My body had been inactive for 3 weeks while I was comatose. I was ready to feel the burn again and become AMERICA’S SKINNIEST AND MOST FLEXIBLE LOSER! The range of motion of the left side of my body was severely but not completely impaired. I had limited movement of my arms and legs. The hemiparesis had knocked the left and right sides my body out of sync.
To improve the weakness on my left side, one of the physical therapists named Ann put me through a variety of balance and stretching exercises in the gym area on a padded mattress in 4 West that was near the nursing station. The exercises were designed to stimulate the left side of my body. Ann stretched my left arm above my shoulder away from my body, a movement called abduction, a painful motion that made me think of a line from a Ray Charles song” Now baby listen baby don’t treat me this way cause I’ll be back on my feet someday.”’
The same therapy was done to my left leg. It was lifted up away from the surface where I was laying down and stretched, and my leg was flexed at my knee. She also had me do a quadruped, a balance exercise where I got down on my hands and knees . I put one arm straight out in front of me and lifted the opposite leg. I also had to balance on both legs, one at a time using a wall for support. My body felt it was being mistreated after my 1st physical therapy session. But, I reacquired the use of some basic motor skills from this kind of torture which became useful in my daily life in the hospital.
I relearned how to walk, and perform other basic functions at St. Mary’s, such as tying my shoes, eating, using my hands, paying my income taxes and balance a checkbook.
Before my discharge in May, my sister Nancy would come to the hospital every 2 weeks. We would meet in my room with my primary care doctor at the hospital, Dr. Stanley Yarnell and my therapists. Dr. Yarnell was head of the Physical Medicine and Rehabilitation Department at he hospital. He was in charge of the team of therapists who were rehabilitating me. I would get a progress report from each of my therapists. Dr. Yarnell would give his prognosis. Due to the nature of my injury ,I made a speedier recovery than was usual for the kind of injury I suffered and I was eager for my release.
Dr. Yarnell explained to me and Nancy in layman terms that I suffered a closed head injury, when my head slammed against the curb and I sustained multiple skull fractures along with damage to the frontal area of my brain when it ricocheted off my skull in the frontal area along with the parietal area at the point of impact. Some of my brain tissue died from the impact. I also experienced something he called retrograde amnesia,. A condition where someone can’t remember things right before a traumatic injury occurred for a period of time. My injury affected my short and long term memory of events for a period of 8 months before the night of my accident. I could remember things that occurred in my life before August 1984 before the night of my accident.
My injury affected the speed at which my brain processed information and body could react to things I saw or felt. My physical therapist Ann mentioned to Dr. Yarnell that I experienced muscle fatigue which was a common symptom of a head injured person, I became tired easily during physical therapy after walking up and down stairs during our physical therapy sessions along with some of the balance or fine motor skill exercises we did . I learned how to walk independently without her assistance back to my room after 2 weeks of physical therapy. In the morning she would usually come to my room and escort me to the gym area.
My speech therapist told Dr. Yarnell that my language and vocabulary skills were excellent due to the nature of my injury but I had trouble grasping concepts and ideas. My occupational therapist mentioned that my motor skills were improving . I was able to get dressed without any assistance and could walk independently. The consensus from each of my therapists was I had made great strides in my recovery based on the nature of my injury but I still needed more therapy.
I made plans for life after my discharge from St. Mary’s. But my plans were put on hold after a visit by the clinical director of a transitional care facility in Berkeley. After my discharge, I wanted to go back and work as a waiter Scott’s Carriage House where I worked for 5 years and had so many friends. I wanted to live independently by myself again in an apartment.
1 month before my discharge I was given a series of neuropsychological tests by Jim Cole. He was the clinical director of a transitional care facility in Berkeley Jim Cole. Jim was the clinical director of The Bay Area Head Injury Recovery Center or BAHIRC as I called it. I still needed more therapy after my discharge according to Dr. Yarnell. Jim suggested to my sister Nancy, who was my primary caretaker that I live there after my release from St. Mary’s.
The transitional care facility in Berkeley was located near the University of California campus in Berkeley. The facility was a 2 story house located in a quiet neighborhood about 1 mile from campus. It was also conveniently located near Alta Bates Medical Center near downtown Berkeley. Jim gave me a series of neuropsychological tests. Each test had a different name. They were used to measure my cognitive skills in areas where my brain was injured the most in the frontal area which controls executive functions such as tracking and sequencing problem solving, and planning. He began the test by giving me the WECHLSER MEMORY SCALE. Jim read me a list of 12-15 words. I had to tell him as many words as I could remember from the list. Jim tested my ability to sequence, another executive function by giving me the WISCONSIN CARD SORTING TEST. He put some cards on the table in front of me which had pictures on them. I was supposed to put the cards back on the table so the cards showed a story from beginning to end.
Jim tested my spatial skills with THE REY OSTIERRIETH COMPLEX FIGURE DEMENTIA. For this test I was shown a picture that was drawn with different geometric shapes. I had to draw the picture from memory in free hand using a pencil on a blank piece of paper.The final test Jim gave was a test of my motor skills. I had to place little round metal pegs into holes on a piece of wood that resembled a cribbage board with my left and right hand.
Jim discussed the test results with Nancy and myself. He convinced Nancy and me that I should live at the transitional care facility where I would meet other people with similar injuries and most importantly receive the cognitive therapy from the staff so I could live independently.
At the time of the accident, I had everything going for me. I had the world in the palm of my hand. I was enrolled at San Francisco State University as a foreign language major. The French language and its culture were my area of emphasis and study. I also worked part-time as a waiter at Scott’s Seafood Grill and Bar, in downtown San Francisco at Embarcadero Center # 3. My goal at the time was to get a B.A. in French from San Francisco State. Then I was going to move to Montreal, Canada, the second largest French-speaking city in the world, where I would get a degree in journalism at McGill University, that has two campuses located in downtown Montreal. I would eventually move to Paris, France where I would foment revolution, teach the French American English and how to speak more eloquently with the proper use of the word ain’t and eliminate the use of bothersome contractions in such words as couldn’t, wouldn’t, haven’t, etc. I would also teach the French to stop being rude to us sometimes-ugly Americanos. I would continue where Napoleon Bonaparte had left off, before he was banished to Club Elba after his downfall at Waterloo in 1815.
My accident diminished the confidence and self-esteem I had. It left me feeling like a little man, and inferior as a person, due to the damage to my limbic system, where executive functions occur, like tracking and sequencing, I found it difficult to do things in order or succession like follow directions, a recipe or work out a math problem using rules, or a formula.
An example of my inability at sequencing occurred in one attempt at a simple shopping trip. My sister Nancy sent me to the store to buy a loaf of wheat bread, and a pint of nonfat milk. Something happened in my mind between the time she gave me the list and my tennis shoes hit the road. I came back 1 hour later with a loaf of bread and a Snickers Candy bar. She looked at me and shook her head in disbelief. I was equally successful as a cook as I was at running errands. Thank god for take out food or I would have poisoned myself and Nancy if I had to prepare a meal. A cook I am not. Dave Can’t Cook.
I was eager to do things and remake my life like it was pre-accident, but my social skills were rusty. Social skills are a higher function of the frontal lobe that develop and become manifest in a person’s behavior towards others. I remember going to some restaurants with Nancy where I would begin ordering when I got inside the door, without waiting for the hostess or host to seat me. This became personally embarrassing when the restaurant was crowded and people stared at me as if I were rude and uncouth, like some kind of barbarian, which I really am. I’M HUNGRY DAMNIT! My impaired cognitive abilities made it difficult for me to process and integrate information into my brain like a course lecture. Socially, it was difficult to have a conversation and stay focused on the subject. Simply put, a neurologist at St. Mary’s hospital explained to me in nonprofessional terms that tracking is literally the ability to walk and chew gum at the same time.
I enrolled at City College of San Francisco one year after my accident in 1986. I met with Hortensia Chang, who was the enabler counselor and director of Disabled Student services at City College. She informed me that I qualified for classroom accommodations under the ADA, Americans with Disabilities Act. For all the courses I took in college until I received my Bachelors Degree, letters were sent to my instructors that described my disability and the accommodations I was entitled to i.e. tape record lectures, extra time to complete tests and assignments, and take tests in a distraction free environment by myself and a date with the instructor’s wife if she were good lookin’ and had money. (Heh, heh, heh)
I received a Bachelor of Arts degree in Liberal Studies at San Francisco State University in 1995. I transferred there after taking enough classes at City College and College of Marin to qualify for admission to San Francisco State. I took courses there in English, Speech, the Social Sciences,Humanities and some literature courses that were prerequisites for my degree area.
When I received my Bachelors degree from San Francisco State, I felt a more meaningful satisfaction than I would have if I earned it before my accident occurred, when things came so easily to me.
It was difficult for me to relate to people socially after my accident because I had a hard time accepting the fact I might never relearn enough basic skills to work again or become exploited and work in a sweatshop making tennis shoes or clothing and be paid ten cents an hour by huge mega corporations like Nike or the Gap. I didn’t want to be like Mike.
Initially, my accident left me with a chip on my shoulder. I constantly feel like I always have to prove myself because I don’t look disabled, since my disability is invisible; no one can see it. I’m more articulate than the average person, except for the times I start drooling whenever I see an hourglass, or a picture of Pamela Anderson Lee pre or post-boob job. I have not changed much since my accident, give or take a few years of psychotherapy before and after my accident occurred. I remain basically the same person I ever was or (am). But I’ve persevered and modified my dream of living in Paris, France as a journalist. I’ve developed a personal philosophy after being told initially by doctors and therapists in the hospital and rehab. center that I’m permanently disabled: I will never give up!
Creative writing is something I have used to reinforce this philosophy. The writing classes I’ve taken served as an outlet in which the act of writing has helped me resolve personal issues and relieve the stress of being disabled.
I’ve worked a variety of volunteer jobs after my accident while taking college courses. The volunteer work I hoped would eventually lead to paid employment. I registered with San Francisco School Volunteers after my discharge from St. .Mary’s Hospital. With my academic background at San Francisco State in foreign Languages and English, my counselor at School Volunteers, Bruce Stengele suggested doing clerical work. I worked as a temporary volunteer at Friends of The San Francisco Public Library in 1986.Doing light clerical work; stuffing envelopes, filing papers etc. I worked at Friends in the morning. I also worked as a volunteer teacher’s aid in a bilingual Kindergarten class at a school located in the Haight Ashbury in the afternoon where the children spoke French and English.
I worked at Friends with enthusiasm. I sat behind a behind a desk. However, all I did was stuff about 1 or 200 envelopes. This activity left my tongue with a permanent curl and allowed me to talk to the 5 year olds at the Bilingual school at their level- like Sylvester the Cat from Bugs Bunny.
After I finished working at Friends and the bilingual school, I worked at St.Mary’s Hospital in the spring of 1987. I wanted to give something back to the hospital for rehabilitating me. I worked on fourth floor west, the rehabilitation ward, where I received rehabilitation as a patient. My job was to assist the physical therapists by filing different colored forms alphabetically. The forms were blue, yellow, and pink and contained patient info. These forms, I was instructed by a physical therapist, who was my supervisor were for new patients. The yellow forms were for patients receiving therapy who were transferred to 4 West from other floors. The pink were for patients who had mobility impairments- in wheelchairs using walkers, etc. This form was placed with the patient’s blue and yellow form in the same file. Gee whiz people, I have a head injury- cut me some slack!
Needless to say, my tenure on 4 west was a short one that lasted 1 week. I became confused as to where the colored forms were supposed to go. I mixed different colored forms together in the same file. I was transferred from four West to the mailroom, at the suggestion of a physical therapist. I delivered mail to patients and different departments. This turned out to be less stressful than filing colored forms. Now I only had 1 color, white to worry about. I began to look for different volunteer work while at the hospital. I became restless and bored sorting and delivering mail.
I met with Rosalind Henning, the director of Volunteer Services at the California Academy of Sciences in July 1987. I told her of my interest of being an elementary schoolteacher. Rosalind informed me about a volunteer position in the Discovery Room. The Discovery Room was an interactive room designed for elementary school children. The room was filled with natural science exhibits. it contained a replica of a human skeleton, and a closet filled with clothes from different countries that could be tried on, such as wooden shoes from Denmark, a sari from India, a Sun hat from China, etc.There was also a bookshelf filled with wooden discovery boxes that could be opened where children could use their natural senses, to learn about different aspects of science. My job in the room was to inform people about the exhibits, and record on a clipboard the number of people, usually school- age children and teachers who came in the room. I worked at the Academy of Sciences every Wednesday beginning in July 1987 in the afternoon from 1-4pm while I was enrolled at San Francisco State University.
I went to Europe for 1 month with my sister Nancy in 1993. I wanted to focus on my course work at San Francisco State and left the museum. The 7 years I spent at the Science Academy were enjoyable. I had control and responsibility of something, the Discovery Room for the 1st time since my release from the hospital and rehabilitation center.
In my spare time between volunteer jobs. I was searching for an activity or outlet that would help relieve the stress and frustration I experienced of being disabled. Creative writing is something I found to resolve personal issues and relieve the stress of being disabled.
I took creative writing courses at U.C.Berkeley Extension from 1997 -2001 after moving across the bay to Berkeley and some online writing courses through UCLA Extension. The writing courses had a therapeutic effect. I use writing as a way of achieving personal satisfaction. It’s something I’ve used to work out personal issues, writing about relationships with people I’ve met, childhood events, etc.
Now I want to become a famous and world-renowned writer of short stories hit the cocktail circuit, attend book signings, and appear on C-Span2.I’d also like to have my books made into successful blockbuster motion pictures that are made for prodigious amounts of money, and reviewed in the New York Times. Then I would develop a drinking problem like Ernest Hemingway, live a decadent lifestyle like Zelda and F. Scott did in Paris, suffer from depression like Sylvia Plath. Ultimately I’d like the short stories I will write become required reading in every English Class in America, Europe and every English-speaking city in the free world.
Had I the heavens’ embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.
"From no knowledge to indepth knowledge"
My boyfriend was in a serious car accident in my state on February 19, 2011. He rolled 11 times down the embankment on the side of one of our highways. The accident was so bad it made the news. The witnesses said when they got to him, it sounded like he was gurgling. In fact the doctors think he was taking his last breaths. He was unresponsive when paramedics got there and later flatlined twice in the hospital. The doctors advised his parents 8 hours after the injury to pull the plug. He had a 95% chance of being a vegetable, he did everything but break his legs. His seat belt saved him from being thrown from the car. He had a right side subdural hematoma and herniation, 2 collapsed lungs,9 broken ribs,left drop foot, his left shoulder blade shattered, rotator cuff damaged,and his left arm broken in 3 places where it was hanging out the window.
He was in a coma for almost four weeks. In the hospital he had seizures and mini strokes. The doctors didn't bother to fix his left arm since they expected him to die.
Before his accident, he was living a crazy life, an adrenaline junkie. On the path to either death or jail. He was a known street racer, doing and selling drugs and plenty of other illegal things. At the time of the accident, he was NOT racing. It was later discovered his upper ball joint broke off. But the state police did no investigation. He had a passenger and she had some injuries but was not nearly as bad off. The state police buried his injuries at the bottom of the file.
He was in the hospital till July 2011. They put a shunt in the left side of his head that drains into his stomach. When he got out, he couldn't walk, he couldn't remember anything, and could barely use his left arm. His filter was nonexistent, which now it gets laughed about but I am sure he offended more than 1 person. Thankfully physical therapy got him walking again and using his arm again. Then, a set back; the shunt malfunctioned and drained too much fluid. His mom had to call the rescue. He once again went back to not walking.
By the time his court date came around in June 2012, he was back to walking, but with a cane, and he still had serious memory problems. The prosecutor and the judge were in shock when he came in, having no idea he even had injuries. His parents couldn't afford an attorney so he was assigned a public defender. Unfortunately, he ended up with a felony- driving to endanger with personal injury- 5 years probation, 5 years suspended and 2 years loss of license.
All this happened before I knew him.. I only knew of him. My ex-fiancé and I were also in the car scene at that time. In June 2013, I left my ex and due to his drama, I was forced to delete all of my car friends off facebook. A few months later, I was able to re-add everyone and he was friends with all my friends, so I added him too and that's where it began. We started talking on facebook messenger and then texting. We discovered we only lived 1/2 mile away from each other. One day, I had something in my tire. I texted him and asked if he could help me.. I had no idea was to expect when I got there. I knew nothing about brain injuries, except what you see on tv. We laugh about it now but I seriously expected him to be way worse off than he was. He apparently saw something in me, because he pursued me like I'd never been pursued before. I had a lot of reservations. What will everyone think, im dating someone with disabilities!
Well as I write this (June 2014) it's been almost 7 months. Its been the best 7 months I've ever experienced. This man loves me, appreciates me like no one else. It's not about how much money I have, what I have and what I can do for him. It's just about us appreciating each other for each other and I can honestly say I am the happiest I have ever been. I spent a lot of time asking questions, learning about his medications and being the best cheerleader I can be. His memory doesn't seem all that bad most of the time(as good as any other mans! haha). He'd sort of just been "existing" for awhile. His parents were afraid of him going back out into the world.
Some days are harder than others though. He tires easily sometimes and can't always understand what I'm telling him. But I wouldn't change how things are for the world. 3.5 years later. he's looking to get back into some type of part time work and trying to get his license back. The main thing I've learned through all this.. is don't judge a book by its cover.
From Teacher to Author When I was twelve years old I was diagnosed as having a brain tumor. It was removed two years later, and although my right side was weak and I had some seizures, I was able to function fairly well. I graduated college and began a teaching career. Twenty-five years later, when I was 37, I had a second tumor removed. This time I was left with an expressive aphasia and no functional use of my right arm. I had to give up my teaching job, my driving, my own apartment, and my independence. I was devastated! I had and continue to have extensive therapies and rehabilitation, water exercises, a leg brace, and private tutoring. My speech problems are significant and very frustrating. My speech is often deliberate and I may search for a word. At times I use my fingers to help me draw the letters for the words. I have found that writing children’s books is the most therapeutic strategy for me. It is a creative outlet for my love of children’s literature, and it provides me with some positive feedback and self-esteem. To date I have published four mystery books, all centered around my pet cat Spencer. They are: Inspector Spencer Solves the Curious Case of Danger Mouse, Inspector Spencer Solves the Case of the Stolen Piano, Inspector Spencer Finds the Purr-fect Solution, and Inspector Spencer Traps Danger Mouse. My parents and friends have been very supportive. They have always been in my corner, rooting for me. I also have a wonderful retired reading specialist who works with me on these books and other language challenges. I am 41 years old now, live with my parents, and recently started a new part-time job. While the job is very basic, it does give me an opportunity to be in a workplace, to socialize with others, and to have a supplemental income. However, my greatest satisfaction is publishing my books and getting feedback from the children who enjoy them.
My daughter Bailey was involved in a pedestrian versus motor vehicle accident on May 19, 2009. She was 11 years old simply out with a friend enjoying what started out as a beautiful sunny day. That all drastically changed in an instance when the driver of a Ford F-150 was distracted by his cell phone. His failure to pay attention to the road led to him not yielding to two innocent pedestrians crossing the street. Ultimately my daughter was plowed into throwing and dragging her small frame about 50ft from impact. She suffered a severe traumatic brain injury, diffused axonal shearing, fractured right hip/femur, multiple pelvic fractures, anatomic storming, and numerous other injuries.
She sustained loss of gray/white matter differentiation in the lower portion of the cerebral hemispheres, left more than right,in the brainstem, and adjacent brain. Subdural, subarachnoid,intraventricular and intraparenchymal hemorrages with diffused brain swelling with transtentorial and tonsillar herniation. Shearing injury of the splenium of corpus callosum and probable additional shearing foci in the hemispheres. Her Glasgow coma was 3.
Bailey spent nearly 6 months inpatient at the hospital. During that time she had to relearn everything that she once did with ease. She went on to continue out patient therapies for the next three years. She continues to do therapy at home. She now is fully independent. She has mild short term memory loss, mild deficits to her right arm, and right leg. The results of having hemiparesis and from losing 1/4-1/2 of an inch in length to her right leg due to the fracture at the growth plate. She walks independently, and can use her right hand, she can write now with both hands which ironically being ambidextrous was a goal she has prior to her brain injury.
Bailey has taught me so much and continues to do so everyday. I learned how strong we both were and that together nothing is impossible. We developed a "Win Win" attitude right off the bat. The word "cant" was not one we used. If something was difficult that meant it became a goal to accomplish but never an "I can't do it" situation. She has astronomical determination and put all she has towards recovering as much as she could.
She currently is 16 years old and a Junior in High School with a GPA of 4.0 for the first half of the year, her cumulative GPA is 3.7. Right now she is looking forward to her Junior prom and exploring colleges.
Thank you for allowing me to share our journey,
Dawn Michelle Ehasz
I sustained my second concussion 2.5 years after a first mild concussion in the fall of 2011. Symptoms of that first concussion lasted about six weeks and then I was fine.
But last November 2013, I fell outside my home. I slipped on a step, sprained my ankle, twisted sideways during the fall (to avoid falling on my face) and landed on my elbow. The force of landing on my elbow bounced me backwards and I hit the top of my head full force on the brick wall of the garage. My son was inside the garage at the time and he heard my head hit the wall. I was wearing a hat, so there was just a trickle of blood and I only blacked out for a few seconds.
I was okay for the first week with bruising and sore muscles, but the concussion symptoms started precisely seven days afterwards and I had head pain such that any thinking was incredibly painful. I stayed still at home for four days and then went back to work in my p-t job as a hospital chaplain. Two weeks after the concussion, I had an ocular hemorrhage. I had some time off at Christmas and just rested. I had to stop all my academic work on my proposed doctoral thesis – it was just too painful and working on the computer was very difficult as was sleeping through the night. I was also sensitive to bright lights and noise. I have been able to keep working part-time, but require huge amounts of rest in order to keep up with my job.
The pain in my head was like a black shroud descending and overtaking everything – I took extra-strength Tylenol every four hours around the clock. By mid-January I felt I was at a standstill with my recovery and I started to research (despite the pain) ways to improve my recovery. Then I had an important realization – what does the brain need to heal, I asked myself – protein!
I found an article online about taking certain amino acids to help with concussion-induced impairment and tried a good quality protein supplement with BCAA’s from the local vitamin store. I took ½ the dose recommended for body builders, 4 scoops (about 20 cc each) over the course of a day. The response was an immediate relief from pain which lasted longer and worked better than Tylenol. Initially I would awake in the night for an extra scoop to help with the pain. I’ve also added brain-friendly fats like avocados and goat cheese to my diet. Meditation has also been very helpful.
Within 2.5 months of starting the protein supplement, my life is now manageable. I am starting back into my doctoral research (with some pain around thinking/remembering, but taking it slowly) and my overall pain level is reduced by 1/3 to ½ of what it was initially. If I have a really busy day at work, I still need to practice stillness the next day – but I am feeling much better. I know that I still need more time to recover, but I am encouraged and want to share the effectiveness of this treatment with others.
I am the Significant Other (S.O.), and mother, to my daughter Talbot who was hit by a car while crossing the street in front of her university over three years ago. She suffers from severe Traumatic Brain Injury as a result. She initially spent over 6 months in the hospital recovering from her injuries which were almost exclusively to her brain. She was attending a university in Northern California and roughly 6 hours after I learned of the accident, I left our home in CT and boarded a flight from New York’s JFK Airport for San Jose. She had already had one surgery to remove the sub-dural hematoma on the left side of her brain which included a craniectomy to relieve the swelling of her brain just hours after arriving at the hospital. A little over 24 hours after I arrived, they operated on the right side of the brain for similar bleeding issues, and another craniectomy was performed. Injuries to both sides of the brain, occur in very small percentages in the overall spectrum of head trauma. They are among the most severe types of brain injury.
What I didn’t know then about brain injury and being a primary care giver, I know a whole lot more about now. For me, there was a stance I took from the get go that I was going to fight for her. I think that came not so much from me, but from her. It wasn’t that she could communicate that to me, in fact it has taken over 3 years in her recovery for her to convey any emotions at all. Rather it was a fight I took on for her, because of her, instead of her, without her. When the neurosurgeon approached me a few hours after I arrived, trying to explain how grave her condition was, I knew he was trying to warn me, to tell me it was bad, really bad. I said the first thing that came into my head, you don’t know Talbot.
That early stance has been my pillar during this 3+ year rehab journey and I daresay essential to me as her S.O. - significant other, primary caregiver, mother, and coach. Early on someone said to me they didn’t want to give me false hope. I immediately corrected them. There is no false hope, I countered, only HOPE.
If HOPE could be a power energy drink, I would be the spokesperson and chief salesperson for the product launch. Without it, I would be lost, bereft and rudderless. As I walk alongside my daughter’s journey which included learning to breathe on her own, swallow, cough, chew, sit, stand, walk and, as of late, ski, ride horses and complete the NYC Marathon this past year, I am the historical scribe but also not so silent, cheerleader and slinger of hope messages. Even when she was undergoing multiple surgeries, I would sing ‘fight songs’ in her ear as they wheeled her into the OR.
What I was in no way prepared for, (and boy that list is long), is the extent of the commitment. I don’t mean like, overtime required, or wish I could take a break, but I mean that none of that is an option. I am not begrudging the commitment, not at all. That’s not it. I wasn’t mentally prepared for it. I kept saying this is my first rodeo and I would learn as I go. And that couldn’t be more true. I am learning along the way to be her coach, her S.O., and a mother again to my now adult daughter, now 24, over 3 and a half years after her tragic accident. What I know now, and have to swallow whole, is that I have to learn what she is learning in her rehab — about the extent of her injuries, the deficits she has suffered, the strategies she needs to use to overcome them and the acceptance that will hopefully come (soon) after she mourns her previous life and reframes a new one. She has been at NYU/Rusk Brain Injury Day Treatment program in NYC since last March, and they have warmly and brilliantly teased out miraculous results making some of the aforementioned successes possible. Her journey has been jagged, long and strident. Where she is now, is thousands of miles away from January 21,2011. I stand along side her in awe and wonder as she continues to blaze this trail to recovery.
If you want to completely frustrate and anger someone who has suffered a Traumatic Brain Injury, then tell us that we are faking, or making a big deal out of it, or that we should get over it, or it's all in our heads. Let me tell you something: it is all in our heads, it's a Brain Injury, dummy!!! And just because you can't see it, doesn't mean it's not real to us.
Usually, especially given our frequent anger issues and our low frustration threshold, our first response to comments like these might be to start stomping and snorting like a race horse in his stall just before post time. However, rather than resolve anything, our reactions often serve to drive people away and drive ourselves crazy. Behind the outward anger and frustration, these comments make us feel exasperated, hopeless, full of self doubt and ultimately lead to us questioning ourselves. In these situations we feel backed into a corner, unable to rationally respond, and just want to explode. Trouble is, when we get upset like that, nothing is resolved.
What is really going on here? The issue here is not that other people are stupid or don't care, it's that other people absolutely cannot comprehend the enormity of what has happened to our brain. That's all. Simple. They have no frame of reference that allows them to even begin to understand what has happened, nor should they be expected to, given where they are coming from, and that is something we need to understand. Even when it is explained to them, they cannot understand. The end result is, other people don't understand us, and we don't understand them.
What makes it even harder is that it seems as though our closest friends have the hardest time adapting to the new us. This is very painful. Those of us who have had a Brain Injury have little patience and understanding for friends who question us or abandon us, and because they have done so at a time when we need them, we feel really hurt and angry. Right when we need them!! Why should we be understanding when we are the weakened ones? The last thing we knew these people were our friends and now it seems as though they are stabbing us in the back, and it's when we are at our weakest and need their support. This is hard to take because it almost seems like they are going out of their way to be bad people.
But let's think for a minute; why were you friends in the first place? A friendship is normally a two way street, meaning that both parties get something from the relationship. A relationship exists because it is mutually beneficial, not because it is good for one person and not good for the other. Nor is this a marriage where, "'til death do us part," and you're stuck with each, at least until you get divorced. This is a friendship, and although we like to idealize and romanticize what that friendship is and means, for it to continue, both parties are going to have to continue to get something from it, and it helps for both parties to be on the same wavelength.
You need the friends who care enough about you as a person to be of service, to go through the tough times as well as the good, and who are emotionally equipped for this type of situation. These type of friends are rare, and they are to be treasured. This does not make your other friends bad people. They are just being human, and may not be equipped to be a friend to you after your brain injury. The point is, you can't count on someone just because they have had the label "friend" in the past. Things have changed.
It's also important to look at how you are with your friends. This can be very hard because you're bound to have some sort of hard feelings towards them if they aren't there for you, but carrying around your anger and feelings of rejection is only going to hurt you in the long run. Feeling this way is just going to keep you stuck in the negative, and suck away the good, positive stuff you that you need to get better and live your life. Most of all, you don't want to get involved in the "blame game", and make it an "us versus them" kind of thing. While it might feel good to belittle other people because of the way they are treating you, it shows a distinct lack of power, and will leave you living in that powerless state.
This is tough, because you want to feel good and feel powerful, and sometimes being angry is the only way to fight back against the world. It's asking a lot of you at a time when you may not have a lot to give, but if you can find a way to move past the negative feelings these situations invariably bring, you will be able to direct your energies towards living your life in a more magnanimous and positive way. Being magnanimous, especially to those people who have hurt you without meaning to, will open up your life in ways you didn't think possible.
You can read more on my blog at www.tbisurvivor.com
BRAIN INJURY ASSOCIATION OF AMERICA
1608 Spring Hill Road, Suite 110 • Vienna, VA 22182 • Phone: 703-761-0750 • Fax: 703-761-0755 National Brain Injury Information Center (Brain Injury Information Only) 1-800-444-6443