My Two Brain Injuries
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.
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.