It Really Wasn't a Dream - A Survivor's Story
When I left for Seattle, WA in Jan 95 for a week-long business meeting with Boeing, I gave no thought to the idea of not returning. It was just another business trip, just like the dozens before. I had turned 29 the previous month. I had been married for a little over 2 years and had a son who had turned a year old at Thanksgiving. I had a good job with the Air Force as Lead Engineer for the Air Launched Cruise Missile. I was in good health. I had no signs of a tumor growing in my brain; no headaches, no blurred vision, no loss of balance, nothing.
At the end of the first day of meetings in the Boeing office, just before heading back to the hotel room, then on to dinner, I started seizing. The first medical people to arrive were the Boeing EMT's. They quickly assessed that the situation was not good. A Medivac helicopter was called in to transport me to the hospital. After the helicopter arrived, it could not immediately lift-off because they could not stop me from seizing. At some point, prior to take-off, the EMT's had to resuscitate me. After getting me to a point where they could take-off, I was flown to Harbor View Medical Center.
After arriving at the hospital, the doctors quickly ran their tests, looked at the MRI results and diagnosed a tumor the size of a small lime growing in my right temporal lobe. The answer was to remove part of my skull and cut out the tumor. As far as the neurosurgeon was concerned, this was a relatively straight-forward 8 hour procedure. I was blessed to have one of the world's premiere neurosurgeons, Dr David Newell, operating on me.
The first thing I remember upon waking in the hospital was believing that I was having the most intense, longest dream of my life. I had so convinced myself it was all a dream that even when my wife and parents were telling me it was not a dream, I believed they were just in my dream telling me it was not a dream. The combination of the trauma to my brain plus the pain and anti-seizure medications left me very confused.
I underwent some in-patient rehabilitation while in Seattle. The most important rehab was the memory therapy I received from the Speech Pathologist. My short-term memory was practically non-existent. I would go from one moment to the next forgetting what had just happened to me. I would forget who had come to visit me. I would forget what I had said less than an hour earlier. My Speech Pathologist worked with me to provide compensatory techniques to augment my memory.
After only 18 days in the hospital, I was released to the care of my wife, and we flew home. When we got home, physically I was all right, but my memory was still deficient. My HMO was not willing to pay for any memory therapy. The HMO was unconvinced that memory therapy provided any results. After much research by my wife, helped by the Speech Pathologists both in OKC and Seattle, and after a bunch of arguing, the HMO finally agreed to pay for some memory therapy sessions. This therapy provided me with compensatory tools and did help my memory just as the literature said it would.
Another area related to my memory deficit was the loss of my pathfinding ability. Before the surgery, I could travel all across the country and not get lost. I could recognize landmarks after passing by only once or twice. For example, when traveling on business, I could follow a map from my hotel out to a location where I had never been before. Then, without looking at the map, I could return to the hotel by just "knowing" the route. I could then come back several months later and remember how to get to the location without using the map. That was before the surgery. A couple of months after the surgery, my wife, her family and I went to eat at a Western Sizzlin'. I went to get something to eat at the salad bar and when I turned to go back to my seat, I was lost. I had no idea where our table was. I just stood there looking for them. I have never been so scared in my life. I felt like a child separated from his parents. I became very anxious; my heart was racing. Luckily, my wife saw me from our table and knew something was wrong because of the way I looked. She stood up and waved to me. The table was not that far away, but until she waved, I had no idea which direction to even begin walking. Even today, I avoid going to the salad bar unless someone else is going. I still do not like to go to the restroom in restaurants because I am afraid I cannot find my way back to the table.
About three months after the surgery, I developed an allergic reaction to my anti-seizure medication (Dilantin). I itched all over and it felt as though I had severe arthritis in my joints. I visited my primary care physician, who consulted with a local neurosurgeon and took me off Dilantin cold turkey. My wife questioned this because we had heard that I needed to be weaned from the medication and not just suddenly removed from medication. However, the doctors assured us that with no tumor there would be no seizures. This was both good and bad. Almost immediately after quitting Dilantin, the confusion I was fighting abated. That was the good. The bad was the fact I still had a seizure disorder because of the scar tissue in my brain left by the surgery. I would be going through the day and would have a sudden, funny feeling that would come and go in the blink of an eye. I could describe it only as "that was weird". This was later attributed to "sparking" caused by the scar tissue. Then, prior to my return to work, while I was out at work visiting my friends, I had a full fledge seizure. After this, I was placed on a different anti-seizure medication.
I also went through what the majority of traumatic brain injury (TBI) patients go through. At first, I believed that I was more capable than I really was; that I had lost no mental capacity. When I discovered that I was not as capable as I believed, the pendulum swung to the other extreme. I believed that I was less capable than I truly was. During this time, I received some counseling for depression resulting from my loss of self-esteem. It was also during this time, that my wife and I attended our first support group meeting. The support group really helped. It was helpful knowing that others had and were still living with the after-effects of a traumatic brain injury. It was helpful knowing that there could be a good life with a TBI. In addition, the education my wife and I received from the professionals who volunteered their personal time was invaluable. Because I spent so little time in the hospital, where the primary focus had been on getting me well physically and assessing my mental condition rather than performing long-term rehab, and with no help from my HMO, the support group was where my wife and I learned the most about the effects of a traumatic brain injury.
About four months after the surgery, I slowly started back to work by working a couple of half days a week, moving to a couple of full days a week, then adding a day a week until about six months after the surgery, when I was back to full time. By then I was back to traveling on business as if nothing had ever happened.
In October 95, I had another seizure. This was very disappointing because I was looking forward to being able to drive again in January. The loss of my driving privileges had been one of the toughest things. It was hard on my wife because she was having to do all the driving and I could no longer run out to get something from the store or to eat. It was also hard on me because I had to swallow my pride and be dependent on others for a ride to work, to go out to eat for lunch or to go to the doctor. After waiting another year, my driving privileges were returned to me. It is like being 16 all over again and getting a driver's license for the first time!
People who did not know me before the surgery probably do not know I am struggling with a TBI. I have no visual indications of suffering a TBI. Also, I have learned to hide my deficits. I tend to hang back and follow people instead of admitting I do not know which way to go. I talk in generalities when I have forgotten the specifics and hope that others will fill in the blanks. These are just a couple of examples of how I cover my deficits.
People who knew me before the surgery notice my deficits. My deficits, especially in pathfinding, have become a joke at work. I was the one who started the jokes as a defense mechanism. It was easier to poke fun at myself and laugh with others than to be embarrassed when I could not find my way back to my desk from the restroom. Even as I laughed with the others, I was still hurting. I was a grown man who could not find my desk, the restroom, or the copier and fax machine which were right around the corner. I was a grown man who would have someone give me instructions then turn right around and forget everything that was said to me. It was very embarrassing. This is an ongoing struggle which I face on a daily basis. The feelings of embarrassment have been a self-inflicted punishment. My co-workers couldn't care less about my pathfinding deficits. They were happy just to have me back at work even if I could not find my desk.
Today, despite my deficits, I have all the responsibilities at work as I had before the surgery. I am grateful to my boss and my boss's boss. Both, but especially my immediate boss, showed confidence in me when I returned to work after the surgery. My boss allowed me to return to work at my pace. He allowed me to fail without retribution and learn from my mistakes, as I discovered my true mental capacity and as I experimented with varying compensatory tools. Even now, I am not completely back to my pre-surgery self. I now have to take many more notes than before the surgery. I have to be reminded to do things more often now than before the surgery. I cannot "multi-task". That is, I cannot do different tasks at the same time, such as talk on the phone and type a letter at the same time. Before the surgery, I could do more than one task at the same time. Now, I have to focus on a single task and finish it before starting another.
On the personal side, I have continued on with my life. Since returning from Seattle, my wife and I have traveled to Arkansas, California, Colorado and Texas for vacations. We now teach a 12th grade Sunday School class. In Oct 96, my wife gave birth to a beautiful baby girl. We have come to accept my deficits as just being a part of me. We have not, and do not, let the chance of tumor re-growth dominate our lives. We have lots of living yet to do. If you had asked me before the surgery about the odds of surviving a brain tumor, I would have replied zero. There was no way the words "tumor", "brain", and "still alive" could be said in the same sentence. I now know that medical advances have not only allowed for survival from a brain tumor but have also provided for a good quality of life after a TBI.
The efforts of the Brain Injury Association of Oklahoma have gone a long way in improving the quality of life for survivors of a TBI. My wife and I attended the 1997 Winter Symposium and medical conference hosted by the Brain Injury Association of Oklahoma. We were impressed to see the number of professionals coming together and sharing information about head injuries in order to better serve TBI survivors and their families. At the symposium, I got to see, for the first time since leaving the hospital, the neurosurgeon who performed my surgery. I had been back to Seattle a number of times on business since leaving the hospital, but had not been able to meet with Dr Newell. When my wife and I saw that Dr Newell was one of the lecturers for the symposium, we knew we had to attend. I had been wanting to see him in order to thank him and let him know that I was enjoying a good life because of his surgical abilities. When we finally got the chance to talk to him, it was a great feeling to see again the man who had saved my life.