David Scott
Headline in the Associated Press on January 8, 2011:
Gabby Giffords, a Democratic member of the United States House of Representatives, was shot in front of a Safeway supermarket where she was meeting publicly with voters. Gabby Giffords was critically injured by a gunshot wound to the head. Six other people were killed.
This story was shocking to the world, but I was even more interested in this story as I am a 25-year survivor of a TBI (traumatic brain injury). When Congresswoman Giffords arrived at the hospital, a neurosurgeon named Dr. Kim performed a lifesaving procedure of draining fluid from her brain that occurred in the aftermath of the injury. On March 12th, about two months after the shooting, Dr. Kim was interviewed in the Associated Press to report how Congresswoman Giffords was doing. He said that she was “progressing in leaps and bounds and that she was starting to walk and show an ability to express herself that was a constant and wonderful thing.”
All of the reports were so upbeat in describing how well she was doing. I realized that Congresswoman Giffords was moving much faster in her recovery than I did. After all, she was in a medically induced coma, which means the doctors give her morphine to allow her brain to rest. When the doctors stopped her medication, she was somewhat responsive. I was also put in a medically induced coma and received morphine when I arrived at the hospital, but when the doctors stopped my medication, I did not respond like she did and stayed in a real coma for eight weeks.
If anyone read the ongoing good-news stories, they would believe Congresswoman Giffords would make a complete recovery and return as America’s Congresswoman again. This didn’t make sense to me. Even though she was never in a real coma, knowing what I know about head injury, someone whose brain had a bullet pass through it would experience extensive damage no matter how fast the recovery. From all that I now know, it would be highly unlikely she could return to the way she was before.
I was hoping my assumptions were wrong, but they weren’t. The tone of the story soon changed. In a copy of Newsweek on April 18, 2011, the same doctor who said she was “progressing in leaps and bounds and what was happening was a wonderful thing” was again interviewed. This time, he said more realistically, “I can understand how somebody listening to us might say they expected her to show up and be normal. But if you polled a bunch of neurologists or neurosurgeons as to what we were saying, they would understand exactly what we were describing and what we think a good recovery means.” Kim added, “There is a bottom line for all such patients, no matter how fast their recovery is. If somebody has a severe brain injury, are they ever going to be like they were before? The answer is no. They are never going to be the exact same person.”
On CNN, Sunday, May 15, 2011, Dr. Sanja Guptha had a program on Congresswoman Giffords to report her progress. He showed what happened to her brain, how they had to remove a large part of the skull to make sure the swollen brain did not touch the skull, and then showed the intense therapy schedule she was taking. I noticed they only showed a blurred distant picture of Gabby Giffords going up the stairway to the spacecraft in which her husband was about to take off. Although this was an amazing display of her recovery, between all of their upbeat optimism they snuck in a not-so-upbeat statement. Dr. Peter Rhee, Chief of Trauma at UMC in Tuscon who treated her when she was first admitted to the hospital, said, “There is permanent brain damage that will never come back.”
I am so amazed as to how little the world knows about what happens to someone who goes through traumatic brain injury, no matter how quickly the recovery rate seems to be going. For me, 25 years after a severe motorcycle accident where I hit an oncoming car with my head, I am faced daily with the many changes in thought, speech, and behavior. Even though I now function at quite a high level and am considered a “miracle” based on how bad my brain was damaged, I am definitely different than I would have been without the motorcycle accident.
When people talk about reentry, they often use it as a term that implies it has a start and a finish. My experience is, reentry never has nor ever will have a finish.
People who haven’t seen me for a long time and know about my accident greet me and say, “Hey Dave, how are things going?” And then I say, “I’m just fine.” Then they all get excited and happy to know things are going so well for me. Then they ask the “predictable trio,” one after another: “Are you working?” “Are you a father yet?” “Are you married?” When I say “no” to each of them, one at a time, I am then forced to wait through the dead silence. People think whenever I say, “I’m just fine,” they assume I’m back to the way I used to be.
After 25 years, I still cannot hold a job. I get close, but my memory problem often interferes. I always tell an employer that I have a severe brain injury, and I get often hired to fill their “disabled” requirements. However, because they do not understand my permanent memory deficit that comes with my TBI, I still get the same three warnings, and when I forget for the third time, they conclude that I don’t care enough to remember their instructions.
After 25 years, I still cannot hold a lasting relationship. I get close, but my temper often interferes. It is difficult for me to keep calm when I am frustrated, and believe me, relationships bring much frustration. My relationships often end because my partner believes that I could have controlled my temper if I “cared enough.”
My mother wrote a book about my eight-week-long coma, called Reconstructing David. We have gotten very positive comments on the book, and we have had a few book signings with some very good publicity on the book. But when people finish it, they want to know more. They want to know what happened when I went into therapy, what happened through therapy, and what my life is like now.
So my mother and I have decided to write a second book, which we are in the process of writing right now. We decided instead of her writing the second book alone as she did with the first, we would write the second book together. Our plan is to structure the book in two parts. In the first half of the book, my mother will detail the stories from rehab to school, to work, to dating. In the second half of the book, I will delve deeper to find out more about why an injured brain causes you to think, speak, and behave like I did.
My job will be to do some research, read some books, talk to doctors, and look up things on the Internet to help me understand why I think, speak, and behave the way I do. I am finding that learning the “whys,” not just the “whats,” helped to change my view of myself. The more I learned, the more I understood my “oddness.” I learned I am not “odd” because I am doing something wrong, but because I learned that’s the way my brain rewired itself and I couldn’t have helped it. This new understanding built my self-esteem. I remember my grandfather’s words. He was a successful lawyer and always gave me the desire to become a lawyer to follow in his footsteps. He used to often say, “knowledge is power.” I now know what he meant. The more I understood why I was so odd, the less odd I felt.
I no longer focus on the life I would have had without the accident. I no longer yearn to be the athlete I used to be. I am burying the fact I was accepted by two Top-Ten Universities to follow my dream to become a lawyer — yet, I never had the chance to attend either of the schools for even one day. I no longer define myself as what I would have been. I now concentrate on finding a sense of accomplishment and achievement in realizing how far I have come from the beginning of my accident. Most people, especially competitive people like me, would have become depressed when they realized there’s no finish line. Not me. I figure if I just forget about my life before the accident, I will have a much easier time focusing in on things that need to be looked at much closer. I will never stop working on improving the new me. I am now energized by my next challenge. I see the world as an amazing place. I feel blessed with the fact that I am still alive. I now believe success isn’t how far you’ve gotten, but the distance you’ve traveled from where you’ve started.
My hope is to share my stories, my experiences, my learning, and my renewed thinking with the 5.3 million people in the country who live with disabilities from brain injuries. I hope it will take them less than 25 years to find a sense of pride in knowing that life with traumatic brain injury does not leave you odd. It leaves you unique. Perhaps people who live with traumatic brain injury should not be called “victims” nor “survivors,” but rather, “conquerors.”
All changes, even the most longed for,
have their melancholy;
for what we leave behind us is a part of ourselves
we must die to one life before we can enter another. — Anatole France
To order Reconstructing David, e-mail dss993@comcast.net or write to:
Reconstructing David
1459 Eastwood Avenue
Highland Park, IL 60035