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.
Use the Tags to find stories that will be helpful to you. Tags are terms used to describe the story, and can help you find stories that are relevant to your situation.
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As I reflect on my life 29 years ago, I realize how truly blessed I am. It was that time when I was gifted to be in an altered state of consciousness for 2 1/2 months. Being in a coma is what I imagine heaven to be like: no issues only Divine presence! There was struggle through the way, but I mostly saw light in the midst.
Now I am doing what I love, writing prayers and communing with God on a different, somewhat new level. I also get to share my “gift,” my disability, with awesome Catholic Schools, their students and their teachers. The gift keeps on giving even further to amazing audiences!
In my personal life, there is my beautiful husband, Jim, who supports my endeavors and my love for Christ more than I could have ever dreamed; he shares that special love with me. How can I not be grateful for all that He has given me? A beautiful family, who I cherish with my life, a healthy attitude which has been my defender, a wonderful husband and quality life! But most significantly, I am grateful for my intense relationship with the God who always was, who continues to be.
It is gratitude that lives on; gratitude that endures; gratitude that will see me through good times and hard times. Gratitude directs me toward the eternal light. There is always something to be grateful for.
I thank God for the sacred moments He and I share together. My gazes toward Jesus in my prayer room are fixated with love, where I receive His Divine mercy. I love you Lord Jesus; thank you for making me a vessel, one saved by grace.
In His powerful love,
Advocate for Persons with Disabilities
Catholic Charities of the Diocese of Baton Rouge
For as long as I could remember, I was an athlete. That’s the way I liked it. In a way sports were what I thought defined me as a person. Unfortunately, when I was a sophomore in high school, I suffered four concussions in three weeks playing basketball. My first concussion that year occurred during a game, which I played through. I had the weekend off from practice, though so I thought I would be fine to play once the weekend was over. I was wrong. My next game was a few days later and the same thing happened only this time I was told to sit out for a week. Instead of listening, I sat out for four days and played again. My first game back was okay, but my second game back was very bad. I do not remember it, but I can go off of what I was told. After hitting my head during this game, I could not regain my balance, I could not see straight when I tried to shoot foul shots, and could not even sit up without falling over when I was waiting at the scorer’s table to get buzzed into the game. The trainer for the other team pulled me aside when she noticed this and didn’t let me go back into the game. She then called my parents who picked me up and took me to the doctor. At this point I was getting really tired of being told I had to sit out, so when my doctor said I had to sit out for two weeks after I became symptom free I knew I would have to find a way around it. Instead of waiting until my symptoms subsided, I was back to playing exactly two weeks after my doctor’s appointment. The game that I returned to was the last basketball game I would ever play. My last concussion that year happened when I banged the back of my head off of the court. I laid there for a few seconds, but was able to stand up on my own and walk myself to the trainer’s room before I fell down. I was brought home and to the emergency room the next day when my symptoms became to get much worse. They held me in the ER while I fought with them because they were “causing me to miss another basketball game”. I was a complete mess.
At this point in time I had no idea the severity of my injury. In fact, I’m not sure anyone knew just how bad it was. I began going to a concussion center once every two weeks where I met a phenomenal doctor who has helped me tremendously. I was told I could not to take part in any kind of physical activity and had to monitor my symptoms. Every two weeks I had to take an ImPACT test on the computer. My scores at first were pretty terrible and since I didn’t have a baseline test for my results to be compared to, I had to retake the test until I reached average scores. By the beginning of my junior year, my ImPACT scores reached above average and I worked my way up to being cleared to do everything except play contact sports. I was so excited I practiced every chance I could to make sure I was ready for when I got cleared again. Then at one of my biweekly appointments, I got cleared! I cried. It was one of the best feelings I had ever had.
However, that feeling didn’t last for long. During preseason of my junior year, I didn’t even hit my head, and every one of my symptoms came back. It was devastating and I was completely confused. When I told my doctor he told me to stop participating and we made an appointment at the concussion center as soon as we could. When I got to the office that day I knew something was wrong, my appointment was after hours and in a completely different office than I had ever been in. The appointment started with my doctor showing me a YouTube video clip of what was going on in my brain. He then explained that although my brain my had healed cognitively, it didn’t heal physically. I found out that I tore nerves in my brain, which caused scar tissue to form. Since I injured my brain so much and never really let it heal, it would never be able to reset itself again. This means that when I was running or doing sharp cuts on the floor (like you would do in basketball), my brain was moving more than it was supposed to and the scar tissue was hitting. He then told me that I would never be able to play sports again. So again, I cried. This time I cried for the rest of the appointment, I cried when I got home, I cried when I woke up, and I cried in school the next day. I felt like by losing my ability to play sports meant losing everything that I am.
I was later sent to the neurology center at the Children’s Hospital in Philadelphia. Of course, I asked them if I could ever play sports again. When I did, they looked confused. They said, “Sweetheart, you need to just be happy that you are alive.”
Throughout the next couple months my symptoms continued to get worse. It got to the point where I couldn’t even be in school and was home bound for the last four months of my junior year. Being home bound may have helped me physically, but emotionally it wrecked me. No longer was I just upset about just losing sports, but now I lost my friends, my freedom, and just the feeling of being like other kids my age. I fell into a depression and my health began to decrease because of it.
By my senior year of high school I was cleared to go to school for half days. At this point in time my symptoms were still very bad and I struggled to complete normal, everyday tasks. However, I was allowed to workout as long as I didn’t jolt my brain too much, jump around, or take part in contact sports. So I practiced with my basketball team. Running around made me throw up because my brain was moving so much. Sometimes I would get sick multiple times a practice, but I didn’t care. Being part of practice at all meant everything to me.
Just like my classmates at this point, I started looking at colleges. I was then told that I probably wouldn’t be able to go away to school since I couldn’t take care of myself then. I was told that I wouldn’t be able to handle the workload or even my symptoms.
This is where my success story starts. I am now a junior at Marywood University studying Health and Physical Education. I am on track to graduate in May of 2015 and have been doing all of this while holding three jobs. It feels pretty amazing to prove people wrong.
Nothing about my life is easy, but I will not let people tell me I cannot do something because of my head (as long as it doesn’t threaten my health). Instead, I’ve learned ways to cope. My room is full of post-it notes which help me to remember everyday things like brushing my teeth, using deodorant, taking medications, and what I should bring to class. Sometimes I still forget, but for the most part I’m doing pretty well. The symptoms that I have at this point in my life are probably the symptoms that I will have for the rest of my life. These include a headache everyday, which I’ve had for the past four years, hallucinations, memory problems, poor concentration, light and noise sensitivity, and a few others. Sometimes my symptoms get unbearable, but I now know how to deal with them. In fact, most people that I know in my college town don’t even know about my head injury, which I think is a pretty big accomplishment in itself.
I wish that I had known how much this head injury would have affected me, but I didn’t. However, that doesn’t mean I can’t help others. My goal is to help young athletes to understand just how serious head injuries are. One game is not worth the rest of your life. My life is changed forever, but it might not be too late for someone else. It would be wonderful if one day I could wake up without a headache, but that probably isn’t realistic. So for now I’m just getting everything out of life that I can and enjoying every second. My injury might prevent me from doing some things, but it will never define who I am.
John (not his real name) is a 37 years old African American male with a severe traumatic brain injury. His injury occurred as the result of an automobile accident when he was 16 years old and driving home from school. After receiving several weeks of care at a major trauma center in Houston, he was transferred to the Texas Institute for Rehabilitation and Research (TIRR). Since the accident, he has completed degrees from both a community college and a state university. Twenty years post-accident, he holds down a full-time job at a state employment cent
er as a resource room specialist.
John’s encounter with Officer Friendly was the result of an independent living issue. John rented a small
apartment in a large urban apartment complex. There were no special features to serve his particular disability needs. Apartment disability services tend to focus on physical issues. In John’s case, the problem was social screening. His work with the public brought him into contact with all types of people, including predators. For a period of time, John had permitted predators to move into his apartment and take over. Some were from the homeless community; others were seeking a place where they could launch illegal activities. Unfortunately, John was unable to say no to their intrusions and, in fact, left them in his apartment unsupervised during the day while he worked and paid all the bills.
John’s caregiver had grave concerns about this situation because the predators were total strangers with unknown histories of violence, drug use, or other criminality. She learned that they were stealing items from his apartment—television sets, telephones, and other electronics were favorites. They had also taken John to the bank to make withdrawals from his account. Occasionally, the caregiver, who was 71 years old, would make surprise visits during the day when John was at work and find and evict the intruders. The unwanted visitors would leave without argument and wait until John returned from work, then move right back in. After encountering a “house guest” engaged in an illegal activity, she realized that she would need outside assistance to handle the problem in the future.
A day or so later, the caregiver called the apartment and discovered that John was ill and had not been to work that day. John never missed work, so this escalated her concern. The caregiver responded that she would be there immediately and that the City Police Department had been alerted and would also be coming. Since the apartment was near to the caregiver and a regional police station, both the caregiver and Officer Friendly arrived at the apartment within minutes. By the time of their arrival, all the unwanted guests had disappeared as usual. John met in the apartment with the caregiver, his dad, the officer, and the apartment complex security officer . The latter explained that he worked for the complex and the authority of the complex stopped at the door to the apartment. Once a person was admitted into the apartment, it was the tenant’s problem, and the city police had to handle the situation.
After a half-hour of discussion, all agreed that John was unable to explain why he permitted strangers to move into his apartment and did not understand the dangers they posed. The city police officer who had participated patiently in the dialogue, recommended that John relinquish his apartment and move back home with his parents. The officer spoke in a quiet, steady voice and made the case that John’s present living conditions were on the verge of producing disastrous results for him and others he cared about. He convinced John that at home with his parents he would not only be safer, but would have better control of his finances and other possessions. Although John loved his apartment dearly, he realized that he had lost control of his living environment and agreed to return to his parents’ home. With the help of his parents, he completed the move by the next day.
The following are some of the positive skills displayed by the officer that may help other TBI survivors and their caregivers:
Non-threatening demeanor. No gun was drawn.
Emphasis on problem-solving, not punishment.
Good listening skills and a calm speaking manner.
Willingness to engage in dialogue with the TBI survivor.
Respectful approach to survivor’s needs.
A letter was sent to the appropriate office commending the officer for his excellent handling of the case. It is important to let the police know when their services have been effective.
Prior to the accident I was very active with family and friends. I was always
on the go with family activities. Birthdays, rodeos, games, celebrations you
name it I went to them all. I was always the funny guy and people always
told me “everyone loves Bruce”. I love to go trail riding with my wife,
family, and our horses. We have traveled to many trail rides and spent 2-7
days and enjoyed it very much. We also like to vacation and have taken
many wonderful trips our highlights being Illinois, Alaska, Hawaii, and
Wyoming. My work life consisted of 60 hrs per week, or more. I enjoyed
my job as a working supervisor as a contractor for the railroad using heavy
equipment. I really liked the planning and organizing that went with it. We
live on a small farm and I always had projects and improvements going on.
My brain injury occurred on a day that I wasn’t even supposed to be working. I was covering for another person so he could go with his son to a Boy Scout function. As I was giving some directions, the operator of a track hoe did not see me and swung the bucket around striking me in the back of the head. At least, I had my hard hat on. I was knocked unconscious and over the course of the day at the Drs. office, and the hospital I was told I had a concussion. I was also told I could go back to work on Monday and the symptoms should go away over time.
It was a difficult summer as I had constant headaches, dizziness, fatigue, and couldn’t think right. I was getting lost going to job sites and could not complete a day’s work due to sleeping on the job. Following directions, much less giving directions, was not working. About 3 months after my accident, my co workers found me hard to arouse in my back hoe. I was admitted to the hospital. I began to realize then that this wasn’t just going to go away and would be something I would need to face up to.
My brain injury poses challenges such as constant migraines, dizziness and falling, hormone issues, fatigue, and cognitive issues. This leads to wanting to be isolated in a quiet, dark room. I have fallen multiple times and sustained injuries, which unfortunately, has also led to additional head injuries. I cannot plan, organize, and remember like I used to.
Getting better has been a learning process and has required help from others.
The first year I found I was so depressed and in so much pain that it was hard to cope. I was asking “Why me” and “ if I could or would want to live in this much pain”. I made it through it with help from my family- especially my wife, children, and grandchildren. I relied on my faith in God and felt that there was a purpose for all of this. The medical professionals reassured me that they would do all they could to help.
I have used multiple strategies to improve the quality of my life. My neurologist has been very helpful and supportive. She has tried multiple therapies not just medication. I have worked with physical therapy, pain management, chiropractor, speech therapist, etc. I have been very fortunate to have a physician that cares. I learned some important things in a behavioral pain program to deal with chronic pain. Now I know that if I pace and space, and use relaxation techniques, and keep my mind on positive thoughts that it helps reduce my migraine by knowing I can cope with the pain. I have recently realized thru my faith in God that getting out and helping others brings benefit back to me. Even though it is easier to stay in the dark, quiet room I make the choice to do the work I can, spend quality time with my family, and make the effort to help others.
My plan for continued improvement is to reach out to others by starting a Headache Support Group for our community. I am involved with our local AgrAbility and will be receiving an assist dog to help with my balance, safety, and work. I am planning to be available as a speaker whenever they need me. I have not received the dog yet but I am sure excited. He is a black lab named Odie. There have been volunteers that have spent countless hours in training him specifically for my needs. The gratitude I feel cannot fully be described in
words but I am so very thankful!
Before the accident, I worked all the time, stayed busy on my small farm, and was very involved with my family. Now that I am at home and at a much slower pace I can spend more time with my grandchildren. I also have learned a new hobby in growing vegetables and in woodworking. These are labors of love that I can still give to my family. It brings me satisfaction, pride, and self worth. I appreciate more in life now, things that in the past I took for granted. This is not how I was expecting my life to be but I have made the decision that I can live with and be happy with my “new” normal!
At the age of seventeen, on May 7th, 2008, I was so close to death that I could have kissed it. The reason was too much speed, no helmet, forgetting to break, and panic.
I walked right by the helmet, not even pausing to think about it- and why would I? Nothing had ever happened to me before. I got on the red three-wheeler (which I, lovingly- to this day-, call Big Red), just as I did everyday, and peeled out of the driveway. Up the road I went, turning around in the same place as usual.
Back down to my house I went- first gear...second...third...fourth...fifth.... I was in fifth when I saw the mail truck and panicked...so they say.
I veered off of the road to the right and went over a small bank- had I not had the experienced that I had, I would have rolled it then and saved myself a lot of agony. I managed to hit a post- I was going between 45 mph and 55mph- and got flung from the three-wheeler, leaving my shoes behind, and hit a pine tree. It did not end there though- Big Red hit me.
The lady who owned the tree found me- how soon I don't know. She had to call for an ambulance three times before they came. When they finally arrived, I only knew my phone number- no name, no address...nothing. The funny thing about that is the fact that that was the first time that I could remember my phone number and we had been living in the house for a little over three monthes.
They transported me to a field where they life-flighted (which I find very ironic since, six days prior, I had said, "One of these days, I'm going to fly in one of those (a med-flight helicopter).") me to the local hospital and then, from there, to OSU Medical Center. Since no one knew my name, I was labeled as Trauma 28 and they performed emergency brain surgery.
The sad thing is that I don't really remember the accident...not really. What I know is what I've been told. The only thing that I remember is right before I hit the tree, I remember thinking, 'Oh, shit!' and the pain of the impact. And I remembered that seven or eight monthes after the accident.
I was diagnosed with two broken ribs, three broken vertebrae, multiple facial fractures and breaks, and Tramatic Brain Injury (TBI). They kept me in ICU for a few days and then put me in the executive suite- since I was a minor.
Things were very distorted. I can't place exactly when things happened. It seems like only a minute...it seems like a lifetime.
The first thing that I remember from OSU (I think) is thinking- or saying, I'm not sure-, "This isn't real. This kind of stuff doesn't happen to me!" That wasn't a lie. Bad things didn't happen to me. Of course, if I actually said it, it would have sounded a lot different.
Two of my friends from school came to see me at one point. One of them didn't say anything, but Mindy (my best friend at the time) was strong- even though she wanted to cry. She didn't cry in front of me, even after I pulled on the neckbrace and said softly, "It hu'ts, Minnie, it hu'ts."
I talked like a child and I couldn't say my "r"s correctly. There are three things that I actually remember about the visit:
1. They were both holding my hands
2. Bending my arm with the IV in it and it beeping. I apologized, "Oops, so'y."
3. Telling Mindy, "You gotta call Alex. You gotta call Alex an' tell him I okay!"
At one point, I tried to jump out of bed- though I couldn't walk- because I was late for school. Another time I woke up and demanded paper and pencil so I could do a math equation. I began reciting the periodic table of elements one morning.
I also remember telling anyone who would listen that I wasn't skipping school, that I was in the hospital. On the day of my accident, my Chemistry teacher, Mr. Dixon, had given us a speech about how it was irresponsible and wrong for kids to be skipping school at the end of a school year. I guess it stuck with me because I was worried that he would think that I was skipping school (which I kind of laugh at it now because, of course, he knew that I was in the hospital). I wrote a letter to him and gave it to Mindy to give to him telling him that I wasn't skipping school that I had had an accident. He was, really, the first person to make me feel welcome at Philo, so I didn't want to disappoint him. His chemistry class was actually the reason that I ended up loving chemistry so much- I had hated it in Newark.
In ICU and in my room, I remember singing (out loud or in my head, I'm not sure) Sweeny Todd: "There's a hole in the world like a great black pit and it's filled people who are filled with shit an the vermin of the world inhabit it...but not for long! They all deserve to die...!" heck, I was even singing it in Children's...especially when I watched it one afternoon! Now that I think about it, it was probably REALLY inappropriate to be singing that song in a hospital- what with people do actually die in them, and evrything.
Near the end of my stay at OSU, they gave me a walker and they walked me down the hall. It seemed like forever, but it took minutes...I was so tired of being on my feet in minutes. They put me in front of a window and had me look out. I don't even remember what I was looking at, I just remember being really sad.
I was then transferred to Nationwide Children's Hospital for Rehab. I had physical, speech, occupational, and recreation threapist...and massage ( my favorite was massage).
When first got to Children's, I cried for the first time (that I can remember) since before the accident. I thought that I would never be able to leave the hospital, or, if I could, I would be unable to live without assistance. I was a handicap in my own eyes.
On May 17th, three of my best friends came to see me- Mindy, Chase, and Jimmy. I was on a lot of pain medication, but I remember a lot of the visit. That was the first time, I think, that I had smiled in ten days. My boyfriend at the time came when they left, and we went down to he cafeteria. That was the first time that I had eaten anything without getting sick since before the accident (almost two weeks had passed since the accident). When we went outside, I walked around the park once or twice, and then went back to sitting in the wheelchair (I could only stand to walk for so long).
I was released on May 23rd, two weeks and two days after the accident. I suppose that I made leaps and bounds in my recovery- I learned how to walk without help and talk as normally as before. The only therapy that helped was physical, though. As much as I hated it and it put me through Hell, it was really helpful. I sounded like an idiot, so I fixed that on my own.
The recovery over the last few years hasn't been easy. Over that first summer, I built up my endurance. I forced myself to stand and walk until I thought I would fall over. I joined the school marching band (though I remained in the pit and played the bells) and forced myself to overcome or ignore the headaches as much as I could.
I have overcome a lot of memory problems as well, but that is going to be a lifelong battle (I still forget silly things like names- not that I was really ever good with them- and such), as the headaches and pain will be.
Now, four years later, I realize that I'm not the same girl that I was then. I still like a lot of the same things, but I look at a lot of things differently too. I have become a bit more talkative, but, at the same time, I can only stand to be around people for so long. If I am around people for a while, later I will retreat into solitude. I don't mind being around people, but, at the same time, people scare the crap out of me and they make me nervous- I'm not quite sure why, but they do.
To think that, had I put a helmet on, I could have avoided so much pain.
Hello, My name is Sandy and I am a TBI survivor. As a matter of fact, I have survived 2 TBI's and I would like to tell you my story. These TBI's were each caused by a car accident and they occurred 35 years apart. The first one happened 43 years ago and the last one happened 8 years ago. I am now in 61 years young and I am able to look back and see how each injury has affected my life and what it has taught me. If you are still interested please read on.
I was a sophomore in college home for the weekend to visit with family. My goal in life was to become a math teacher, get married and have kids. I was a friendly, shy, mature and determined young lady. Now it was Sunday afternoon and it was time to return to school. My brother and boyfriend attended the same school and we all piled in to the back seat of our friend's VW Bug. It was a tight fit and, of course, I sat in the middle being the smallest of the three. Unbeknownst to me at the time my father had some concerns about letting us go because he felt one of the rear tires did not have enough tread. So off we going traveling north on the NY State Thruway headed to State University of New York at Albany. Amidst the chatter of friends and the music on the radio I managed to fall asleep. I need to tell you the year was 1970 so you can get some perspective about what technology available at the time. About 20 miles south of our destination, in the middle of nowhere, my father's premonition happened. The rear tire blew. The VW flipped over. I was thrown out the rear window and landed on some rocks nearby. When my brother and boyfriend found me I was conscious and I said I couldn't move my legs.
Do you believe in fate, karma, or destiny? Well, an off-duty NY State Trooper miraculously happened to drive by and came to our rescue. He had a car radio and was able to call for an ambulance from Albany Medical Center, which was the best medical center in all of upstate NY. Remember, it was 1970 and people just did not have cell phones like they do today. So my "fate/destiny" was to get help as soon as possible. Turns out that I had a spinal compression fracture which means that the amount of damage that becomes permanent is proportionately related the amount of time it takes to get treatment. So then again, my "fate/destiny" is aligned so that I will get treatment at the best hospital available in the shortest amount of time.
Now to my head injury. I also had fractures to my skull which were also repaired surgically which left me in a coma for 10 days following surgery. My first recollection of the accident at all is waking up in the hospital 3 weeks later. That is called "retrograde amnesia". My boyfriend was bedside when I woke up and my first words to him were: "What took you so long to get here?" I am assuming that the damage to my right frontal lobe was also limited by the timely surgical and medical care I received. No one ever discussed that with me. Again my stars aligned themselves for the best outcome and possibly for a hint to my future.
I stayed in the hospital for a total of 9 weeks and wore a body cast for 3 months which went from my chest to my hips. I was lucky that they provided a hole in the cast by my belly button for scratching purposes. I've been told they don't always do that. Intensive Physical Therapy saw me through the following stages of recovery: from wheelchair to tilt table so I wouldn't faint when I stood up, to parallel bars, to walker. When I was ready to go home I was using Lofstrand crutches (The kind that have a strap around your forearm rather than going to your armpits). Regular crutches wouldn't have worked with my body cast. After the cast was removed I wore a Knight-Tayor spinal support brace. Now I was allowed to remove the brace so I could take a shower. This went on for another 9 months. I continued with outpatient P.T. which included Hydrotherapy to help increase Range of Motion in my legs, strengthening exercises and gait training. My therapists were all wonderful: considerate, friendly, understanding and knowledgeable.
Am I leaving anything out? Have you noticed that I did not mention any kind of cognitive testing? Well, that wasn't done for me in 1970 or any time thereafter. I was able to recognize my family and friends, I could read and write, and speak coherently. Although I had been in a coma and suffered retrograde amnesia I guess no-one thought that my behavior was abnormal or unexpected. So I received no additional help.
Actually, I exceeded all the doctors' expectations. They predicted I would walk with a serious limp. I don't. They predicted I wouldn't be able to have children. I have three healthy children. I do have some residual physical disabilities. I lost my sense of smell (and therefore part of my ability to taste) which is pretty common. I have partial hearing loss in my right ear, balance problems, am predisposed to tension headaches, am unable to keep up with activities that require excessive strength and endurance, and some neurological pain problems that improved over the years. Actually, the next 35 years seemed normal, except for when I look back in hindsight. Let me again reiterate that the treatment I received only related to physical injuries. No one ever discussed the possibility of me having problems that are now known to result from TBI.
Before I move on to car accident #2 I have to backtrack and tell you about the factors that played a role in my recovery from car accident #1. It is always helpful to have a role model……Someone you have seen struggle and overcome battles and live life with dignity. If you don't know someone like that, find someone. For me it was my Mother. She had Multiple Sclerosis. There aren't many diseases out there that test your gumption, perseverance, and need for a positive attitude like MS does. I watched her strength weaken and her abilities decline over the years. Yet she never showed self pity to me or my brother. When she was in pain she tried to hide it from us. When she fell she wouldn't tell us. I was close to my mother. I was her daughter, her friend, her confidante and for some things, her caregiver. So if one person had to be injured in this car accident I was SO grateful it was me and NOT my brother or my boyfriend. I was well equipped to deal with the pain and the handicaps. They weren't. So I was happy because they had only sustained minor physical injuries and I knew I would be able to handle what had happened to me.
Having a boyfriend and wanting to keep him at 18 years old is also an amazing motivator to move towards recovery. Plus the fact that he was extremely supportive and caring during this critical time.
Healing and recovery take hard work. You must practice those exercise programs, whether they are for strength, cognitive and/or speech purposes in order to get better. I have to say I had role models in this area as well. I am the child of Holocaust survivors. Both my parents were in concentration camps in Germany. They lived through horrible ordeals and managed to survive. That took hard work and inner strength. I don't want to trivialize what they went through by saying that my struggles compare with theirs' because they don't. What I do want to say is that the knowledge of what they went through and survived made me proud. It gave me an inner strength to survive and also gave me a maturity that most American kids don't have at the age of 18. That helped me get through some of the down times over the years post injury. You also need HOPE. If you set small goals you will see progress over time. The neurological pain went away after about 10 years. Headaches became manageable once I learned the triggers. Although I still can't smell and taste is limited to sweet, sour, salt , I have developed a fine sense of food texture that helps me enjoy and discriminate between foods I like and don't like. I feel this is still changing and improving.
My life proceeded as if nothing unusual had happened to me. I returned to college the following year. I changed my major from math to become a Physical Therapist. I feel as if a purpose was served by the injuries I sustained and experiences I had as a patient so that I would become the most caring, understanding, considerate and knowledgeable Physical Therapist ever. My boyfriend also changed his goals from considering dentistry to wanting to become a doctor. We got married while he was in medical school and had 3 children. Unfortunately my marriage dissolved after 12 years when my children were 2,4 and 6 years old. I will discuss how the first TBI contributed to some of the problems leading to my divorce later in this article.
Now let's fast forward 35 years since the first accident. My children are adults. I have been with my second husband for almost 20 years. I am working full time as a Physical Therapist. It is January in Northern Michigan and the roads are treacherous. I am driving home at a safe speed for the conditions, when around the bend in front of me an oncoming car loses control in order to avoid a truck partially blocking its path and skids into my drivers' side front wheel and I end up stuck in a snowbank. I am shaken up but otherwise feel OK. I don't realize until many months later that I had blacked out between the time I saw the other car come at me to the time I realized I was in the snowbank. My husband comes to pick me up and my car is towed away. The next morning I have a headache and my neck muscles are very tense. I go to my doctor and she prescribes pain medication and Physical Therapy. The second car accident is the proverbial "straw that broke my camel's back"!! My life unravelled in a way I had never anticipated.
I return to work and over the next 6 months my condition deteriorates no matter how much I try to deny it. My car has been fixed I can't drive and my husband becomes my chauffeur. When I am behind the wheel I get panic attacks. Then I get so-o-o-o tired when I arrive at my destination that I can't do anything. I also have a hard time concentrating on the road especially when cars are coming at me. I also begin to feel this aura/pressure around and in my head. I don't feel like myself, it's like I'm zoned out.
Then I begin to feel unsteady when walking down a hallway at work and in the supermarket. I have trouble making simple decisions (which brand of soup do I choose?) I can't concentrate at work when there is background noise. It takes me twice as long to write a report. I start typing letter reversals and have trouble keeping my thoughts in order. I need to double and triple check for accuracy.
I am too tired after work to do anything else but rest. My husband starts cooking dinners, doing laundry and shopping for groceries. All I do in my free time is sleep and read.
I cut back and rearranged my work hours to what I am able to tolerate. I became increasingly frantic as I see myself doing less and less. My anxiety level has skyrocketed. My husband is also affected by the changes in me. He is not a medical person and he is worried about me and looking for answers how to help me. The doctors' don't really have any answers. As a matter of fact, there really weren't any doctors in our small town who had any experience in diagnosing and treating brain injury. So he was constantly researching and living in this constant state of feeling inadequate - there must be something else he can do!! Through it all he was alone. We asked the doctors' if there were any restrictions to activities I could do and they repeatedly said there were none. We asked the doctors' if I was at increased risk than others to having another head injury and/or increased damage as a result of my history and they adamantly said NO!!! Looking back now, common sense would say otherwise.
About 5 months later it's a beautiful Sunday and my husband and I decide to go out for a short boat ride. There were small waves and we were out on the water for less than an hour. Apparently that slight wave action was enough to again disturb my sensitized brain. My symptoms worsened dramatically overnight and I saw my doctor first thing Monday morning. She basically gave me a choice: Go back to work and become a vegetable or stay home and give your brain time to heal. I decided to stay home.
I would never have believed that I would never go back to work as a Physical Therapist again if I was asked at that time. Over the next 3 years I had so many tests I can't remember them all: Neuropsychological tests, MRI's, CAT scans, balance tests, hearing tests, psychological tests. I went for counseling. I saw Physical Therapists. I changed medications, dosages and counselors numerous times. The MRI showed frontal lobe damage from the first car accident but they found nothing new. Some of the tests showed minor abnormalities and discrepancies between what was found and what was expected. But nothing definitive. Prognosis guarded. The diagnoses most commonly used were post concussion syndrome and cervicalgia. Generic diagnoses. My doctor never wrote mild TBI as a diagnosis. Was that because it is only recently being accepted by the medical profession as a legitimate disorder? So during this time wherever I went for help, to doctors and therapists alike, there was always the unspoken ghost in the room…. They thought I was a fraud! What a horrible feeling. One Doctor actually wrote in his report that I came to him with a "laundry list" of problems. To me that phrase "laundry list" was indicative of the low opinion that was held about my pain and distress. I was guilty until proven innocent.
Then I was proven innocent. It happened when all my benefits ran out and I still had the same problems. It was only then that my veracity was confirmed. After 3 years of treating me my own doctor finally said she truly believed me since I had nothing left to lose. I only hope that new tests are developed quickly so more people don't have to go through what I did to prove they legitimately have a TBI problem.
Soon after I needed to change my counselor again. This time I looked in the Yellow Pages myself rather than go by referrals and there was an ad for a Neuropsychologist locally. I decided to try him and it was the best decision I ever made regarding my treatment. Later the analogy came to me: Do you go to eat steak in a seafood restaurant, a burger in a Chinese restaurant? Why didn't any of my doctor's suggest I go to a NEUROpsychologist rather than a psychologist right from the beginning? I had a BRAIN injury … a neurological problem. It would have saved me a lot of grief if they had. From my neuropsychologist I learned that a TBI resets one's neurological system to a more sensitive level. That explained my extreme sensitivity to pain and my high anxiety level. I also learned that after a brain injury it takes more energy to remember, focus, concentrate, balance, make decisions and control anxiety and that helped explain my constant state of fatigue. With his help I began to understand how these same symptoms were present to a lesser degree ever since my first car accident. I had been living with TBI for 35 years without knowing it. I began to understand how my difficulty with memory, recognition, anxiety, tension and recall had influenced my life. For example, when I was a teenager music was a big part of my life. I was lucky because I grew up when some of the best musician's were famous: The Beatles, The Rolling Stones, The Temptations, Aretha Franklin, Moody Blues, Rod Stuart. I knew all the words to these and more. After the first car accident I didn't have the time for music anymore. I intermittently remembered actors and actresses, movies I had seen, specifics about restaurants and vacations. But I was able to continue college and graduate with a profession, so not remembering unimportant collateral information seemed trivial. As you get older life's responsibilities increase. As that happened to me what developed became a Catch 22 situation…… increased responsibility/things to do led to increased anxiety which led to increased cognitive problems which led to increased fatigue which led to increased responsibility/things to do. My difficulty coping increased significantly as we moved to a new location, started a family and started a medical practice. I had trouble remembering people's names and events I had attended. My first husband began to doubt whether I really cared about our life together. He became less supportive and more critical of most everything I did. I became increasingly insecure and withdrawn. I couldn't understand what was happening to me, no less defend myself against his accusations. I now realize that there was a logical explanation for what I was going through. That knowledge has helped me understand some of the causes of my divorce and along with counseling has helped me get beyond the anger that had developed and lead to the final stage of acceptance.
After a car accident and the resulting injuries you are not only faced with medical issues and healing but you are simultaneously faced with legal issues and insurance company shenanigans. Nobody wants to talk about this. In addition to my own physicians ordering tests, the auto insurance company made me see their physician's and repeat the major tests. The additional stress of having to deal with insurance coverage and potential litigation definitely slowed down my progress. I also had a lot of difficulty finding a lawyer to represent me as I wasn't an open and shut case. Remember - I had no proof of new head injury. Once I found a lawyer there were meetings and lawsuits, meetings and lawsuits and decisions that needed to be made. At every turn the insurance company balked at payment. This went on for years, and still does now but to a much lesser extent as precedents have been set.
After my second head injury I spent 3 years fairly isolated. I wasn't working so that contact with other people was gone. I can't drive and there was really nowhere to go. After being driven to a grocery store, dealing with the increased "aura" caused by the ride itself, the aisles, the people and the shopping decisions I was totally exhausted when I got home. Luckily I love reading. And with my dog next to me I was very content. I found that certain family and friends don't understand head injury and why someone is not able to drive and they drifted away over time. After about 5 years I was ready to venture forth and begin trying new things outside the house. Some ideas worked while others failed. You have to keep trying. I joined our local TBI support group. It was very helpful to hear others' stories and especially the feelings of camaraderie. Unfortunately that group has now dissolved and I must say I miss it. I have also done volunteer work for our local hospital and Red Cross. I knit items and donate them to our Women's Resource Center or Goodwill. To me it is very important to stay productive. The amount and skill level may be different, but the thought and sense of fulfillment is there.
I don't know what I would have done without my second husband. He was my support system, my friend, my advocate. Anyone with a head injury needs someone to talk to and advocate for their needs along with them. Most importantly my husband knows I have changed and that is OK with him. Change is a constant in any relationship and with a head injury some dreams need to change as reality no longer makes them possible. Both parties need to be flexible to adjust to the new realities and make new plans to fulfill hopes and dreams. As long as we have each other there is a solution, a way to work things out. We are in the process of changing our dreams to meet our current situation. I am learning to let go of the past and to live and enjoy the present. And that is the BEST anyone can hope for.
HOW TIME UNITED ME IN A NEW RELATION WITH MY MOTHER
I am an Indian girl. My mom has been very beautiful with fair complexion, very good height, attractive features and a smiling face. As a typical Indian woman I use to see my mom in routine ornaments i.e. bangles in her hand, a gold chain around her long neck, some attractive tops in her ears, ring in fingers, but suddenly, on 17 July 2006, a completely different personality of my mom confronted me, the cannula, I.V. fluids has taken the place of bangles, tracheostomy has replaced the gold chain, probe of monitor in finger, Many new tubes like oral pipe of ventilator, Ryle’s-tube (nasogastric feeding tube) in nose, urine catheter etc. were also added. My mom has been a Class I officer in India. That day 17th July 2006, the day which has changed our life significantly was the day when I see off my mom for her office but was not aware that after few hours something tragic will happen as a consequent of that I will not be able to hear my mom’s voice for 3 years.
AN OVERVIEW OF HER MEDICAL CONDITION
My mom got a severe head injury because of road traffic accident in the afternoon of 17 th July during her official visit to some place because of head on collision of the car with truck. The impact was so severe that two occupants of car died on the spot and another two lost their life later in hospital. My mom and other member were taken to hospital. We were informed about that by the hospital staff. We rushed there simply imaging that there would be few bandage in my mom’s forehead and she will be fine otherwise and come with us within few hours. But actual scenario was different. On arrival to hospital I found my mom was unconscious with no motor response. The cranial CT scan reported an extensive, comminuted fracture of frontal bone and left parietal bone besides multiple fractures involving the frontal sinus, left orbit and floor of anterior cranial fossa. There were multiple areas of bilateral cerebral contusion. Moreover, there were fractures on neck and on right limbs along with the fracture of left shoulder. Besides, these there were many complications in other body parts as a consequence of accident and the doctor told us she is very critical and anything can happen within 24 hrs. After providing her basic supportive measures like transfusion of blood, putting on elective ventilation etc subsequently her craniotomy was done and bone flap was not replaced for additional decompression. For the next few days blood tests, transfusion of blood, blood components, medicines to maintain vitals was a routine. Nearly after one month ventilator was weaned off and eye opening was there but for pain only. She got infection in craniotomy with CSF leak which was managed conservatively with regular dressing. Eye opening was there after nearly 2 months but still she was not able to recognize. After nearly 3.5 months of accident she got meningitis which was improved using antibiotics as suggested by my mom’s physician Dr. Lalitha Sekhar. Following improvement of craniotomy wound and meningitis, scalp flap reconstruction was done to cover the defect but bone defect was still present. Time is really a great thing. Just a few seconds of collision have changed the life of an active, happy hearted lady to a life supported on many machines.
During her stay in hospital I have travelled 10 hr daily for five months, five hours from our city to Delhi then another five for return journey. On arrival to hospital I use to discus my mom’s condition with doctors then meet my father who stayed there along with our relatives till her discharge from hospital. I have never wept in front of my father rather provided him strength morally. On returning home after travelling for another 5 hrs I use to take care of my younger brother’s study since he was promoting from school life to college life and then handled various guests. Until 4 months I have heard the hard words anything can happen regarding survival of my mom, be prepared but I never lost hope and started my journey next day by thinking that perhaps this might be the day when doctor would say she is out of danger now. Although my mom was not conscious at that time, but even then I use to tell her all the things I have done during the whole day by assuming that my mom must be hearing all this although she is physically not able to reply this. I asked my mom’s neurosurgeon Dr. Pranav kumar, is it would be beneficial for her? He intelligently replied it has no harm. Sometimes me and my brother recorded our voice in a cassette and provided it to the nurse at my mom’s bed so that she may let my mom to hear that via ear phones on opening eyes. In fact she was made to listen her favorite songs.
I didn’t’ give any break to my studies. Rather I use to read during my 10 hr journey in bus because I believe that whenever my mom will get recover she might not find herself to be responsible for any discontinuity in my study. Perhaps God has given me extra power both physically and mentally.
APPRECIATION AND GUIDANCE OF DOCTORS
Thus, after so many ups and downs, struggle for life, survival, existence, fight from multiple infections, stamina for multiple surgeries and operations and with intensive monitoring along with intensive nursing care, her stay for nearly 5 struggling months in the Indraprastha Apollo Hospital my mom was discharged in the month of December, with tracheostomy along with T-tube, urine catheter, and PEG feeding tube. At that time she was neurologically stable, alert, spastic quadriparesis present but with improved limb movements
At the time of discharge our neurosurgeon, Dr. Pranav kumar told us about recovery of head injury patient is a matter of time. How long! How much! someone will get improved cannot be said with certainty. But as earlier he also emphasized on the +ve side and encouraged us by saying that since the very first day my mom was admitted to the hospital and till the day of discharge there were many events of miracle which may be her survival, fight from meningitis and other accident related problems. This provided us large support morally and emotionally.
The hospital staff taught me many things like daily care of my mom, making her environment like ICU and told us what basic things we will need at this time etc.
We managed all these things before arrival of my mom at home like air mattress, suction machines, nebulizer etc. A completely new chapter was added to my life. My mom was alert at that time but she was not able to speak, understand much, and walk. Even she was not able to turn herself by her own. But after everything she was my mom. I decided howsoever would difficult the task be I will do at my best for caring my mom. Sometimes I got disappointed because my aim was to join IAS (Indian administration Services) but life has changed the plans then my inside answered me, If reverse would happened i.e. if I got the accident did my mom would think like this, never. Since that day I never think negative rather looked forward and tried new better, way for her recovery.
Initially we kept a nurse to assist soon I learned the usual things and do not needed her. My day started with her morning medicine, morning exercise, cleaning her motion, sponge bath, periodic fed at the intervals of 2 hrs, dressing of peg-fed, tracheostomy, suctioning as per need etc. We kept a physiotherapist for her limb moment.
As per our orthopedics Doctor's advise, we started her wheel chair sitting for maintaining back muscles for half an hour or more depending upon her comfort. Sometimes twice or thrice a day. We use to take her outside in front yard and backyard, jaunt her on chair in all the rooms in home but taking due care of T-tube, PEG feeding tube, urine bag. We use to put moist gauze at the end of T-tube so as to prevent sand particles and any small mosquito etc. We continued this every day. Suddenly one day I found she started responding to sound whenever, she heard any sound like traffic horn etc she turned her neck towards the side of sound source. This response soon got enhanced towards multiple voices.
START OF ORAL FEEDING
One day the PEG feeding tube accidently got out. We all feared much and contacted to our doctors at Apollo hospital, New Delhi. They told us it to be okay it happens some time. They let the scar of PEG feeding tube to heal and provided my mom with Ryle’s Tube and advised to start oral feed with soft diet. This was truly a positive indication from God because if the peg had not come out, we might not be able to start my mom’s oral feed.
I started with boiled potatoes, thick custard and even the soft baby fed like Cerelac. Initially the diet intake was few spoons which improved with the span of time. Liquid was also tried orally starting from few spoons. The major liquid intake and medicines were however provided through Ryle’s Tube which needs to be changed at the interval of 20-25 days depending upon the condition. Soon by guidance of doctors I learned to change the Ryle’s tube and even tracheostomy.
PROVIDING PAIN FOR HER COMFORT
Sometimes I feel too bad as why the luck has given me such an act of providing pain to my mom as suctioning, change of Ryle’s Tube, urine catheter and physiotherapy of limbs (so that these would not got stiff) were painful. But I have to make myself somewhat hard since it was the need of hours and much necessary for maintaining my mom for the day when all these tubes etc will be taken out.
Everything was going fine. Although gradually but certainly things were changing. Oral intake of soft diet and liquid was getting improved. In fact even the tracheostomy was decannulated in Jan 2008. Nearly after 2 months of removal of tracheostomy suddenly at one night my mom found difficulty in breathing. There was loud noisy breathing (stridor). The destiny played a very ugly game with us. At that day, there was a famous festival of India-Holi, festival of colors. Everyone was celebrating that but we were facing such a deep trouble that because of the day of festival we got the ambulance with very difficulty. We have to rush to Apollo Hospital, New Delhi. I have no words to express our situation where every second was becoming alarming and raising the fear. The doctors there confirmed it to be Tracheomalacia (a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse and the trachea may become so narrow that it becomes hard to breathe) and as a consequent of it tracheostomy was replaced. Although we all were disappointed but positive thing was that her life was safe. Although this incidence has lowered our confidence but was not able to shaken our faith in God and we started with same routine.
Earlier the sounds of ambulance were terrifying but those days these have become part of our life. In fact travelling to Apollo from our residence was also like a big test of life because of my mom’s condition and the 5 hrs run at that stage. We use to take the manual suction machine and other such things for any need in the way. Rather I kept a beg ready for any such emergency.
ANOTHER PROBLEM EMERGED-OSTEOMYELITIS
Meanwhile I have joined Ph.D. in organic chemistry. Although it was very difficult for me to manage all the tasks i.e. extensive lab work, my mom’s care, managing home since all things needed a large contribution of time and labor. I do not know how but certainly God has given me enough courage to manage all this. Moreover the support of my father and my younger brother’s help can’t be forgotten.
The destiny has set another exam of bearing pain for my mom. That was osteomyelitis (infection of bone). The rod implant which was placed for the union of right femur fracture got infected. It was physically visible by the large lumps of swelling on the lower side of thigh and pain and finally pus discharged. I talked to my mom’s orthopedics, Dr. K. B. Attri, at Apollo. They confirmed it to be an osteomyelitis by x-ray analysis and other necessary tests. In nearly one year she was operated twice for it. But even after that, this started reoccurring after every 2-3 months, sometimes 6 months. Each time dressings, antibiotic treatment sometimes intravenous, another times oral was done. However we never missed the normal routine, indeed our orthopedics suggested chair sitting to my mom is very important to deal with osteomyelitis and we, off course obeyed him.
That year, 2008 was really very-very hard because if we moved 2 steps forward suddenly something happened which on analogy to a backward direction reaction as it is found in my subject chemistry, forced us to march four steps behind over our move. Sometimes we all were very disappointed, but soon we gain our enthusiasm, by remembering that a ray of light destroys the darkness of night, howsoever longer the night is.
ANOTHER PROGRESS-REMOVAL OF Ryle’s TUBE
By acquiring, the grip and pick of hand, the one more important step was achieved which was removal of Ryle’s tube. Now my mom has become considerably alert and her majesty and speedily improving left hand movement assisted her in getting rid of R.T. (Ryle’s tube). She has become very clever. At night, on finding that everyone is sleeping she used to take out the Ryle’s tube by left hand put it silently aside. On morning this surprise was waiting for us. We all feel as glad for this naughty activity of her as a mother feels delighted on the notorious activity of her child.
This time God was giving us indication for a new step i.e., oral intake of fluid which at that time has considerably increased. We tried to reinsert Ryle’s tube but every time result was same she was not tolerating that tube anymore. Within a few days her oral intake of both fluid and food became normal. But still another problem was there-how to give her medicine which was otherwise given through R. T. To find the solution to it, I remembered my childhood event. Whenever I got ill in my childhood my mom use to give me medicine by dissolving it on water on spoon along with a little sugar.
•I tried the same thing, but all in vein. At that time my mom’s taste sensation has become so strong that she uses to reject it by spitting out from her mouth along with the peculiar facial expression for bitter taste as found in us.
•Then I tried it by mixing with feed like sweet custard which was also not successful.
•Finally I got the way with tea and biscuits. I use to mix the crushed medicine with biscuits soaked in tea with some crushed sugar. Then I use to give this homogenous paste by spoon along with bites of biscuit soaked in tea.
Thus the main problem which emerged after removal of R.T. was solved.
THE DAY WHEN MY MOM TOOK TEA BY HER OWN HAND
Every day my life was telling me a lesson. After so many setbacks, outcomes were gained like my mother started holding her neck, left hand movement got highly efficient, left leg movement got enhanced and right hand movement improved at finger and clavicle bone. Although right leg bending was feeble but the feet showed up and down movement.
One day I tried a new thing, I, gave a cup of tea to my mom, in her left hand. She picked it instantaneously and sipped the tea in cup by her hand so fast that she will satiate the long will to take tea by her own hand just in 2 minutes, which was otherwise suspended because of her neural status. From this new achievement, I increased her picking activities.
SITTING BY HERSELF
The tracheostomy was decannulated in Jan 2009. The removal of tracheostomy and Ryle’s tube provided the way to many things since a lot of care has to taken for handling these while doing any new thing. Due to routine physiotherapy and regular chair sitting, my mom’s back got enough strength to sit without support although initially it was for a less duration. I use to let my mom sit over the side of bed with legs in hanging down position, initially supporting her back with pillows as without pillow support she use to fall backwards. I keep on repeating this day to day. Soon her back gained enough strength that pillow support was needed no longer rather, sitting without support was maintained for 2 minutes, then 10 minutes finally up to half an hour. I use to do this 3-4 times a day.
But the whole procedure was not as easy as it seemed. Initially my mom felt pain in back while sitting and use to cry. I tried to divert her mind by counting. I use to ask her sit till I count 100 for 5 times, sometimes up to 10 times depending upon her capacity to sit. This trial was very successful. In fact I was achieving two things this way, one sitting other her mathematics was getting sediment.
ACTIVITY TO INCREASE HAND GRIP
While making my mom to sit over the side of bed with legs in hanging down position, sometimes I used to give few coins in her left hand and asked her to throw these on floor. Initially she was perplexed and was not able to decide whether to throw the coin or not. But slowly I persuaded her to do so. Nearly after 10-15 days she became confident enough to throw the things. This way she learned physics i.e. the effect of gravity. Then I taught her about fixing targets by asking her to pick objects at one point then throwing at specific place just like game of arrow hitting the mark.
Moreover, through this coin picking activity I made my mom to learn about the difference of picking things one by one or collectively. Sometimes I use to ask her to pick 4 or 5 or more coins. One time she was correct other time may make mistake but soon she got the perfectness.
ATTEMPTS TO RECALL MEMORY
We tried many attempts in this regard. I use to show my mom our photo albums. Earlier when the attention was low and eye fixing was not gained even then, we use to show her photographs on the same side where she looked. Not only that but we try to focus her on television also. For this also sometimes she gained attention with television another time no curiosity. But we tried it every day without thinking that we are not getting enough results. Soon just like ripening of crop our labor brought fruit i.e. my mom started focusing on things and gained attention. I use to recall her by pointing my finger to a particular relative and tell about her relationship to that particular relative.
During Jan., 2008, there was persistent bulging of craniotomy flap and my mom got somewhat drowsy. My mom’s neurosurgeon diagnosed it to be hydrocephalous (abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain). A Ventriculoperitoneal shunt was carried out resulting in disappearing of craniotomy flap bulge and my mom became more alert.
To my great surprise, one day a very different activity occurred. When she gained her left hand moment, I asked my mom to find out a particular relative by pointing with her own finger. She did it successfully. Rather she performed a new thing, one day she took the album in her hand (I supported it from other side as her right hand moment was still feeble) and started turning pages of photographs album, flip through each page, as someone does while reading a book. We use to take her to different rooms of our home on wheel chair, showed her objects, her saris and another dresses, almirah, played her favorite songs, etc.
READING AND WRITING HABITS
I arranged charts of week days, months, alphabets, numbers and pasted them on the wall, in front of my mom’s bed so that whenever she would see these charts this would remind her habit of reading. I remembered one event of my childhood when our math’s teacher advised us to make a chart of some difficult formula’s and paste it on wall in front of our bed so that its very presence will remind us the formula which proved to be a very successful advice. I use to bring newspaper in front of her and by pointing with my finger just speak out the headlines. All this strategy really worked.
Regarding writing our speech therapist advised me to teach my mom like an adult i.e. I should not use the method of matching the points to form alphabets as it is done for a nursery child rather I have to recall the things to learned persons. First day I asked my mom to write alphabets. She tried a few. For the next few days I concentrated her on the charts of alphabets and just like a teacher provides her students some homework, I use to ask my mom to write these. Although, initially this was very difficult but with patience and hard work I got the way. Whenever I asked my mom to write alphabets she gave me good results.
But above all these, accident has brought a major change. Before her accident my mom has been right handed. But now because of large damage to left frontal lobe, the movement of right hand was low. She learned to write by left hand. Slowly she started writing words on my dictation and then sentences.
The time has tided me in a new relationship with my mom and the destiny has made my mom to be a daughter of mine.
TASK FOR REMINDING PLACES
As a consequence of tracheomalacia, the tracheostomy was done again as I cited earlier, but nearly after 10 months it was decannulated as per our neurosurgeon’s suggestion.
Thus after nearly 3 years of my mom head injury, the main tubes tracheostomy and Ryle’s-tube were removed but one tube catheter was there. We started a new thing. Earlier we use to take my mom inside home, in our backyard, front yard etc on wheel chair. This proved much useful in gaining sound sensation, alertness and most important an indirect way for exercising her back muscles.
One day I think why not we expose my mom to outside world as the infection causing tubes were not there. Taking her outside on wheel chair was not practically possible, because of left frontal lobe craniotomy. So, we decided to take her outside in car. Although, initially it seemed very difficult as the whole procedure involved firstly shifting my mom from bed to chair, then from chair to car seat and most important the catheter is to be taken care of but carefully and prevention ally me, my father and my brother managed all this.
POSITIVE EFFECT OF OUTSIDE ENVIRONMENT ON MEMORY
Initially on the way I use to tell my mom about the things on left side (like hospital) and right side (like college) and then, on returning from the U-turn I use to told her that the things on left has become right and vice-versa.
I keep on repeating these things. Sometimes we use to jaunt same streets for few days so that she might recall these places. Another time we change streets, took her to market in car to let her explore new places. We also use to go to our village where the old known places and the greenery of field further proved to be a boon for memory.
Finally I got the fruit she started distinguishing between the things on right and left side. When I use to ask her what is on left side, she replied absolutely for instance, she rightly distinguished the left, right and face-to-face location of hospital and college respectively. Not only this but she also use to object when we change the routine roaming track.
After nearly 2 yrs of discharge of my mom from hospital I contacted the speech therapist. Although the neurosurgeon told us about too less chances of speech because of large damage to left frontal lobe but I decided I have to make my mom to speak. We consulted speech therapist. He told me that very first thing I have to do is that I have to try whether my mom will be able to blow in to flute or not as by doing so her vocal cords will be activated. I tried it by fearing whether it will work or not. But by God’s grace the trial was very successful she blow in to flute so nicely. We all were very happy. I told it to therapist. He told me the next step which was to recall my mom, normal things like week days, months, emotional events, like weeping, laughing, etc. For this he provided me a chart where pictures representing normal things like emotions (weep, cry, happiness) and relations (like father, mother, children etc.) were present. I tried all these things. Even I use to read newspaper by placing it in front of her telling her significance of words and pictures printed on it.
After nearly 4 years, on December 10, 2010 suddenly, my mom started uttering some words. I just by chance asked her about my name, her name, our relative’s name she speaks out immediately. I was so happy. In fact every time she spells out exact words. I contacted the speech therapist, he told me to let my mom learn more words. We all practiced own way. What I thought was fact that watching T.V. and reading newspaper in front of her provoked a great impact. Earlier she use to point out relatives in photographs via finger, this time she started recognizing them by calling their name. Soon she started speaking sentences like I need tea, give me breakfast, I want to go outside etc. slowly the pronunciation also got improved.
As I mentioned earlier, I use to count while making my mom to sit. When she started speaking I use to ask her to count for 20, 30 etc. herself while sitting, depending upon her mood, as now she sometimes exhibited obstinate behavior like a child. Sometimes I ask her to tell me tables, week days, months, prayers, songs etc while sitting on the side of bed. She got learned all these things. I feel much delighted on hearing tables in my mom’s voice. Now my morning really becomes good on hearing good morning from my mom.
The God has given us a new ray of life.
One day my brother was listening an old movie song while working on his laptop. Suddenly my mom started singing few lines of that song. We all were too surprised. Then I sung a half line of her favorite song in front of her and asked her to complete as much she can do. She completed some of the remaining part.
Working on this strategy, I use to tell only some part of idioms and then let my mom to complete the remaining just like a teacher performs while carrying out the test for filling the blanks. She did it perfectly.
LEG MOMENT IMPROVEMENT
As I mentioned earlier in order to increase sitting activity of my mom I use to let her sit over the side of bed with legs in hanging down position but with some support at bottom so that legs might not got pain while sitting in this position. I use to remove the support frequently for few minutes in order to enhance strength of her legs. Sometimes I use to ask my mom to move her feet to and fro until I count 10, then 20 or 40 etc. depending upon her stamina to bear pain. As a consequence of this activity her left leg got good strength but right was not gaining much.
Then I bring into being a new idea, I took empty containers of Telkom powder. I filled them with marbles of different numbers in order to create different weights. For the left leg, being good in strength and activity, I took box with large no. of marbles i.e. higher weight and asked my mom to kick that till I count 10 or 20 finally the stamina reached up to 40. She did it very well. I was not expecting that she would perform the act so fluently and efficiently.
The right leg, being less strong than left one, was made to kick box with less number of marbles i.e. lighter weight. Initially it was slow, but with time the right leg also got strength and its pace to kick became fast.
Soon the weights for left and right leg were respectively increased which ultimately gained much enhanced moment of both legs. Moreover, this was indirectly making knee exercise.
PRESENT STATE OF HEALTH
Now nearly after 6.5 years of accident, my mom who has been a vegetative head injury patient with only alertness has come out to be a person with good understanding, speaking ability. The movement at right side is although weak but much improved and the left side has become very efficient. I strongly believe that soon my mom will also start moving on her legs and my very dream to go market with my mom will come true.
Her personality is again getting transition to the original one i.e. ornaments at neck, hands, ears, talking, laughing, weeping and with many other emotion moods. She has become a fond of watching Television and enjoys delicious food. As a chemistry student I can stop myself writing that it has happened like a reversible reaction in chemistry but as 2nd law of thermodynamics says “every process is accompanied by entropy” the reversal in backward direction is not 100% same as for forward direction.
Through my mom’s story I want to tell the whole world that please do not lose heart and courage when your loved ones have to face such a big medical problem. I was at the age of 21 when my mom got accident and during these 6.5 years I have learned the whole life experiences. If we work by heart God will certainly support that. I strongly oppose Euthanasia. I want to share my experiences so that the persons who are already suffered by their destiny should get support from their family. It is really our examination set by God to find how much we are concerned about our loved ones.
My mom’s case is well known to many people in our city. These days many people come to me for their family members who got such sufferings and became bed-ridden, in order to know all what I have done for rehabilitation of my mom after such a severe brain injury. The great scientist “Stephen Hawking” is inspiration to us. At last but not least I want to share a moral which I got from the very famous Thirsty Crow story-“where there is will there is certainly some way –addressed by destiny and constructed by us”.
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.
CrossFit provides forward motion for Severe TBI victim.
By Billy Wilkerson
I have done CrossFit for almost a year and I can dead lift 325lbs. My time for Helen is 11:14, and my time for Murph is 54:13; it is not astounding but according to my doctors I shouldn’t be able to walk or talk normally, let alone write this article.
On July 31, 2011, I was driving with my best friend of 20 years, Ron Bailey Jr., and we were hit by a drunk driver.
We both received severe traumatic brain injuries, my face was shattered and my forearm snapped. After being in a coma for a week and in ICU for 16 days, I was transferred to Shepherd Center in Atlanta for intense brain rehabilitation. When I arrived at the Shepherd Center, I had no idea what the date was, how old I was, how I had gotten there, and was unable to recall my two children who were 9 months and 3 years old at the time.
I was inpatient in the ABI (acquired brain injury) unit for four weeks where I received intense therapies from 7 a.m. to -4 p.m. daily. In September, I was released to go home. However, before my accident we were staying with family while I toured as a percussionist/back-up singer for Levi Lowrey. So in October, we needed to find a place to rent that would enable me to continue a safe recovery. With severe traumatic brain injuries, you are told you will have disabilities. You have to redefine who you are. It takes about two years to get back to near normal.
We stopped our search at the first house we visited. My wife, Jill, said it was divine intervention and we were meant to be there. The house had a fence and behind that a three-car garage. My younger brother, Zach, moved in with us to help Jill and I with our two kids Evie, 4, and Dawson, 1. One morning, Zach saw people working out at the garage behind the house and I told him to go see what they were doing. He found out it was a CrossFit gym called CrossFit Confidence it had just opened up on Aug. 1, 2011.
The day after my accident, Amanda Greaver, the trainer and owner of then CrossFit Confidence, now Orange Beach CrossFit, learned of my story and let us join for free. She wanted to help me in my recovery.
My first day was in November 2011, and I did a baseline that consisted of rowing 500M, 40 air squats, 30 sit-ups, 20 push-ups, and 10 pull-ups. It took me 18 minutes but I finished it -- with a trache in, no less. Yes, you read right, by that time, I had had seven surgeries since the accident and one that included a tracheotomy because they were protecting my vocal cords. And I had two more surgeries left.
Amanda and the other CrossFit trainer, Andrew Forbes, became my new physical therapists. They sometimes were like my counselors because they would always listen to me, help me talk things out, and guide me in positive directions. I always finished last on the WODs, but the CrossFit Confidence community would always cheer me on like I was winning the Olympics.
I got my trache out on Feb. 20, 2012 and had a total of nine surgeries from facial reconstruction to a rhinoseptoplasty. Finished with surgeries, I was able to enter into Beast Mode.
My Doctors were shocked to find out I was doing CrossFit and that I had stopped taking all my medications that included lots of pain pills, sleeping aids, and anti-depressants, and asked how that was possible. I was able to because food became my medicine. Combined with CrossFit, this allowed my body to naturally produce the chemicals the medications were trying to replace. It is common that after a severe traumatic brain injury, your chemistry is thrown off, from testosterone to dopamine. I did not want to pull the TBI card and become the unfit, distant, video-game playing husband who was addicted to pills.
CrossFit has empowered me to make forward motion in the most difficult journey of my life. It has enabled me to become a better husband and father and I am in the best shape of my life. I have been a staff singer/songwriter for Whitestone Motion Pictures for eight years. Now I am adding CrossFit Level 1 certification to my list, and in the spring, Orange Beach CrossFit is hosting a Garage Games and I am going to compete. But most of all, I am becoming a CrossFit trainer to empower people to make forward motion in their own lives.
Sadly, my best friend, Ron, remains in a vegetative state. He resides at a nursing home in Athens. His family is planning for him to return to their home before the holidays this year.
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