Debbie Wilson's TBI and Epilepsy Story
It was July 2, 1989, and my family and I had gone to Kentucky Fried Chicken for lunch. As I was walking through the parking lot, a sixteen year old boy driving his grandfather's pick-up truck, decided he was too impatient to wait to pull into traffic. Instead, he put his truck in reverse, and stomped on the gas, just as I was walking behind him. I had approximately two seconds of warning, knowing that there was no way for me to get out of his way in time. The bed of the truck hit me in the face, knocking out three of my front teeth, and then throwing me on the ground on the back of my head. I spent approximately seven hours in a small hospital emergency room. Once they ascertained that I did not have a fractured skull or a broken neck I was released. My husband noticed immediately on the ride home from the hospital that I had no perception of time. I had been at the hospital for over seven hours, and I thought I had been there for forty-five minutes.
July 2, 1989, was the beginning of a nightmare for my family and myself. I could not remember things, and had yellow sticky notes hung all over our house. It got so bad that my husband bought a blackboard and hung it in the kitchen so I could write myself reminder notes. I had unbearable headaches and horrible nightmares. As the nightmares continued, I was fearful of letting myself sleep. As a result of the oral surgery being done on my teeth, it was difficult to eat. I lost weight and became very depressed. I was extremely paranoid and fearful of things that had never frightened me before. I could not cry or feel emotion as I had before. I was constantly anxious about my children, life in general, and myself. I had difficulty processing information. I could not make my hands work right, and could not even fold my laundry or tie my shoes. My balance was off, and I had no depth perception.
I was seeing a medical doctor for some of my other injuries, and when I would tell him what I was experiencing, he just kept saying it was stress and put me on tranquilizers. At that time in my life, I believed that if a doctor said something, then it must be true, however, I was wrong. Finally after living this way for four weeks, my husband convinced me I needed to be in the hospital. When I went to the emergency room, I told the doctor that I had been hit by a truck. I explained that there was not anything wrong with me physically so the symptoms I was having must mean I was having a nervous breakdown. To give some insight on TBI judgment impairment, even though I had been struck down by a truck, it did not dawn on me that I was physically hurt. Luckily for me, the doctor noticed that I was getting my words confused when I talked. When I meant "up" I would say "down", but I could not tell I was saying anything wrong. I was given a full battery of neuropsychological tests the next day.
At the time of my accident I thought I had my whole future planned out and had just completed my second year of law school. I had been working full-time as a Felony Probation Officer. However, when the doctor came to give me the results of my testing, my whole world shattered. I assumed that I was emotionally unstable as a result of being hit by a truck. Instead I was told that I had permanent brain damage and was borderline retarded in four major cognotive areas, and that I would likely never work again. Emotionally unstable seemed like a very temporary problem and something the doctor could definitely treat. However, the new news was overwhelming and did not seem likely remedied by the physician. This assumption was true to a great extent. The physician could do little but help determine the areas I was the most deficient in. This was the beginning of recovery for me. Once a head injury survivor realizes where the problems are, they can begin to try to compensate for them. Though I will never do things exactly the same way as before, the brain is a remarkable organ capable of so much more than most people ever comprehend.
On December 15th., 1991, I was diagnosed with epilepsy as a result of the head trauma. My seizures have thus far been uncontrolled by medication. However, with each new FDA approved epilepsy medication, I have new hope. Due to having four different foci areas, I am not a candidate for surgery.
On July 20, 1996, I sustained my second traumatic brain injury. This injury occurred as a result of a fall while trying a new epilepsy medication. I was unconscious for approximately two and one half hours. I was home alone. Even though I had already experienced seven years of living with a TBI, I had no idea how injured I was. My family was out of town at the time of my second accident, so I was not coming in contact with anyone. There was a few people on my internet TBI support group that suspected I had sustained a serious injury, but I did not want to listen and thought I would know. I was wrong. When my husband returned, he sat me down after spending two days with me. He explained that we must have all of the neuropsychological tests run again. I actually asked him why? That is how distorted my perception was at that time. My husband checked the refrigerator and apparently all the food he had bought for me was still there. I had gone two weeks while my family was out of town without remembering to do basic things, like eating!
This was the beginning of a horror story for me again. I was seven years post my first injury and had gone back to graduate school via "long-distance courses." I was three courses away from my PhD. I started with the usual tests and ended up taking the dreaded neuro psychological test to see how bad I was in comparison to the previous test. In four cognitive areas I scored in the bottom 1% of the nation. Prognosis was less than bleak, since the areas affected were the same as my first injury. I also had specific damage to my left temporal lobe. My seizures that had never been controlled, were now coming in clusters of three or more for hours at a time. I had to start on emergency injections, that were required almost daily for the first eight months after my second injury. My husband had to be taught by the hospital how to give me injections.
My husband was in the US Army at this time and we were stationed in Hawaii. My husband's chain of command, decided that I was unable to care for my children at that time, therefore making him undeployable in the Army's eyes. Even with an incredible plea on behalf of my then wonderful neurologist Dr. Leo Maher, the Army still discharged my husband, due to "lack of an adequate family plan." At this time we were moved 5,000 miles back to the mainland, I lost my wonderful neurologist, and I also lost my medical benefits. I am grateful for the first doctor who diagnosed my brain injury, because that was the beginning of learning how to compensate for the things I could not do. I now use those much needed compensation skills to get through daily life today. However, it has been eight years of frustration, mainly because I could remember how easy tasks had been prior to accident number one and now again accident number two. I have now learned not to try and compete with the "old me" that had different capabilities than the "new me." I did not like the new me, or her capabilities for a very long time. I had no choice but to try and relearn the things I had lost, and practice constantly in my deficient areas. I wanted my life back very badly, even if it would never be the same. I also had to learn to love this "new me". I now consider myself one of the lucky head injury survivors. I am probably not capable of one day working again, and even though I continue to relearn the seizures that affect my body almost daily, have made me face the reality of my life as it is today.
The brain injuries and constant seizures have allowed my children anything but a normal life. Initially they were embarrassed by my seizures. Yes, I feel guilty. I will always wonder how much my disability has negatively impacted my children's lives.
I now have a seizure alert dog by the name of "Harley". Harley is my ever-present companion. He can detect my seizures up to thirty minutes before I know I am going to have one. As a result of this truly miraculous gift in my life I have less falls and therefore get hurt much less than before. I am not afraid to go places due to the embarrassment of never knowing when I will have a seizure. Harley detects and warns me, and we get in a safe place. He watches over me when I am unconscious. There are new seizure medications being FDA approved all the time. Maybe one day, there will be a medication that controls my seizures. I see life as more hopeful, and full of promise than I have yet dared to dream of. I am unable to drive due to the epilepsy. The side-effects of the medication and the continued seizure activity and brain injury have prevented me from working for the past six years.
In the midst of all my pain I learned that if I wrote about my feelings I felt better. As a result of my writing, I have had poems and prose published all over the world. The Brain Injury Association of Hawaii published my first book in October of 1996. My writing is brain injury and epilepsy oriented, in hopes that someone else will find peace and or acceptance. I do not know if I will ever be able to complete those last three courses and obtain my PhD. But I still have that goal. I also still try to dream about new goals in the future.
Since my accidents and post-traumatic seizures I have learned more than I ever did in college and more than I ever had in my entire life. No one can control fate. However, we can learn to set new goals. We can realistically plan a different future. We can learn to love the person we now are. We can see the negative and the failure so clearly, but we must keep our eyes on the positive. Let's give ourselves credit for who we are now, and what we have survived. Remember nobody would have raised their hand and volunteered for this injury. We can use our disability to help others. Be thankful for the incredible gift of life, I know I am.
by: Debbie Wilson