PARALYSIS...MY WORST ENEMY

August 17, 1999

It has only taken me almost 14 years to finally address the dark side of this paralyzing experience, but I believe I am ready now. What I am about to share with you is coming straight from my heart, as do all my writings. My intention is simply wanting you, my friends, to understand, to the best of your abilities, what saddens me, frustrates me, depresses me, and angers me about paralysis. It is not meant to generate sympathy or compassion. If you feel that way then that is your choice and it would be quite natural, but please understand that I am not seeking to elicit a response from you. My belief is that the more you are informed about the emotions wrapped up with my situation coupled with statistics on paralysis worldwide, the more you may be able to heal your own insecurities and wounds, if you choose. 

For my friends out there who are addressing their own physical challenges, please try to remember, this is my experience. I am in no position to analyze how someone else who is paralyzed is feeling, coping, adjusting, etc. If there are no two spinal cord injuries alike, how could I even begin to comprehend what it is that makes you tick? Each and everyone of us is on his or her own personal crusade towards healing and I, for one, am not about to pass any judgement. So, without further delay, here is my story, or shall I say nightmare.

While sitting on a plane headed towards Rome, Italy, I pulled out my journal and began to list all the negative ingredients contained in my paralysis. Considering that I am basically a happy person at the moment, it was very difficult to construct such a list. I had to dig a little bit deeper to summon the necessary pain. Suddenly waves of emotions began to fill my mind. Since I was on a plane, I could not simply release all of these "unfriendly" emotions, so I channeled them into writing a pretty detailed list. My energy level began to drop as did my integrity. In terms of my integrity, I felt as if I had fooled everyone in my life beginning with myself. Scott has always been known as the kid who always has a smile on his face, who overcomes all obstacles, and the kid who never lets anything bother him. Oh, if you could all have seen me on that flight and see me now writing this. I don't want to hide or be dishonest anymore. It doesn't serve you nor does it serve me anymore. If something about my paralysis or anything else for that matter is disturbing me, you will be able to sense it now. Trust me! Why hide it and have to deal with it later? It's time to feel your feelings without feeling that someone is going to leave you, that you will be judged, or that you are weak. Let's go!

Before I became paralyzed at the age of 15, I had dreams and aspirations of either playing basketball at The University of North Carolina - Chapel Hill or venturing down to Oklahoma and running the wishbone offense as quarterback for the Sooners' football team. One way or another, I was determined to get there. Those dreams faded on December 28, 1985. I had dreams of dunking a basketball, walking along the beach with a wife and children, going out to clubs and dancing, and many more "simple" things that one usually has the opportunity to pursue and possibly achieve. Never would I have ever imagined that my legs would be "still" during such an important time in my life. I can still recall telling myself two years after I was paralyzed, "It's still temporary, it will go away!" There is still a part of me that believes this is all just a dream and then I look at a calendar and I am really awakened. All of those dreams are just dreams. That saddens me. It still moves me when I think back as to how my family was affected by my paralysis. First of all, you think I had dreams and aspirations, well my parents had just as many or more for me. Witnessing firsthand how physical movement represented so much vitality in my life, my parents were shocked by my experience. They had even been told that I may die. When I first became paralyzed, doctors were uncertain as to what was the cause. Finally, they suggested exploratory surgery and explained the risks, even possible death, to my family. The news hit them hard. It didn't phase me. It hurt me more to see them struggle for answers. To this day, seeing someone else coping with my situation affects me more than addressing my own challenges. Another challenge for me was to help my brother understand that I was not suffering. I informed him that it would be best for all of us if he went back to college and focused on his studies. He has always been one of my greatest fans, yet I know that my paralysis still affects him deeply on some level. Up until that day in December of '85, our relationship focused mainly on playing basketball, throwing a football or baseball around, or wrestling somewhere in the house where we were not supposed to be. I don't know how I would have been if this had happened to him. In regards to being a parent, how would I react if I was told that my son would never walk again? It still saddens me when I think of all the pain that my paralyzing experience has caused them.

From time to time, I think of the pain that paralysis has caused my friends. As was the case with my family, I assume a feeling of helplessness overcame then and still may to this day. Though my old friends are still by side and support me wholeheartedly, I still wonder how I would have been if the tables had been turned. I could only hope that I could offer as much strength and support that they did and still do. But I know it still moves them to tears sometimes. I recall the early days of paralysis when the phone would ring and friends didn't know exactly what to say. Normally, we would jump in a car, go shoot a few baskets, chase some girls, or some other crazy high school or college normality. There were times when I knew what the "boys" were doing and I could not join them, nor would they call fearing that I would be upset because I could not join them. Another story which will always be a part of me takes me back to the early days of paralysis again when a football teammate of mine came to visit me in rehabilitation. I felt his pain, frustration, and sadness. He could not even look me in the eye. Our connection was out on the football field which was no longer possible. I understood, but it hurt. It still hurts.

While I am sharing deep-rooted feelings from the early days of paralysis, I might as well share some stories about old relationships. Back in high school, I recall attending a friend's party and he introduced me to his cousin who lived in a neighboring town. She sat down next to me and we began to talk for a couple of hours. It was not on my mind at the time, but looking back at that evening, it didn't appear that my wheelchair was even an issue. So I asked her out on a date, she accepted, and we were off to the movies. We had a great time, I believed, and talked the next day on the telephone. Immediately, I sensed hesitation in her voice and she appeared a little withdrawn, but I did not have a clue as to why. So I asked her if there was anything wrong or if I had done something. She replied, "No." Following my instincts, I pursued the matter. Finally, she told me that she did not feel it was right for us to go out again. I was stunned even though it had only been one date. Her reason...she could not handle my being in a wheelchair. I guess the novelty wore off. That saddened me.

The second relationship story I would like to share with you involves a woman I dated in college. After about two weeks of dating, she invited me over for dinner. So I drove over to her house and began to take the wheelchair out of the car when I saw her motion for me to wait a minute. She asked if we could go for a ride before dinner. Quite strange, don't you think? Anyway, we drove off down the road and again, my instincts got the better of me. After about two minutes of telling me that nothing was wrong, I pulled the car over and demanded that she explain what was going on. Do you have any ideas? Well, her father could not "deal" with my paralysis and informed his daughter that she could do much better. "Ouch!", did that hurt! I drove her back home and told her I would talk to her later. That event was a reality check for me. For one of the first times in my life, I saw myself as being paralyzed and wondered how others viewed me. I'll never forget that long drive home because it was filled with so much pain, anger, frustration, and sadness.

Let's bring you up to speed to August 17, 1999. Since I began to take a journey inwards and rediscover who I really am and what I want in this life, I have found that paralysis affects me more than ever. This can be a good thing and a not so good thing! What bothers me now? I have sexuality issues which begin with not fully accepting my body. To be quite honest with you, I don't know if I have ever been accepting of my body even before my paralysis. I have been quite judgmental of it. That saddens me. Not being able to be as present "physically" with my wife all the timefrustrates me, depresses me, and saddens me. Not being able to go to the bathroom on my own frustrates me, depresses me , and saddens me. I have to catherize myself or if that term is not in your vocabulary, insert a foreign instrument that allows me to urinate. And let's not forget the spasms. For those of you who are unaware of what a "spasm" is, it is an involuntary muscle movement, similar to when your eye twitches and you are unable to control it. On many occasions, when I sleep, my legs and abdomen shake and will jar my upper body to the point where no matter how tired I am physically and/or mentally, I still can not sleep. How's that for lack of control!! Time constraints bother me at times. Getting dressed, showering, getting around, all take me a little bit more time than they did in the past.

Yesterday was one of my inspirations for writing this story. Pat and I went to the famous Colosseum here in Rome, Italy. Let's just say that it is not the most accessible tourist attraction in the world. I was limited to moving around in a small section of the ground level tier. Since Pat was so excited to be there, I suggested she take a tour of the amazing structure and meet me back in my little world on the lower level. As I sat there and surveyed this popular tourist site, I felt a deep sadness overcome me like
never before. I looked up and saw Patti with our video camera, panning the entire structure and absorbing all that the tour guide had to say. I was thrilled that she was able to have that experience, but I wanted to have it as well. For the first time in my life, I really felt as if I was missing out on something because I am confined to a wheelchair. I wanted to climb those stairs and hear more about the gladiators fighting, why this part of the Colosseum looked this way, and all the other fascinating stories surrounding this work of art. I felt all alone for that brief moment.

If this story could not get any more depressing, I am currently coping with intense pain in my left hand. I have had this pain before, but not to this degree. It is from overuse. How do you tell someone who relies on his hands to do just about everything, that he needs to take it easy for a day or two and relax his hands? Better yet, how do you tell yourself. It is another sign of how my paralysis affects me negatively. This is pain from which I can not hide. Every time I go to push the wheelchair, it is waiting for me. Every time I transfer from the wheelchair to the bed, or to the toilet, or to the shower, or into a taxi cab, it is waiting for me. Every time I change positions in bed while sleeping, it is waiting for me. I can't walk with my electric stimulation system because it is waiting for me.I am not afraid of pain, but instead of ignoring it, I am choosing to feel it for a change...and it saddens me.

Now, before you tell yourself that this is one of the most depressing stories that you have ever read, please know that my next story is entitled, "Paralysis...My Best Friend." There are always two sides to everything in life. How would we know light if we did not experience darkness?. How would we know that something was cold if we did not feel heat? How would we know a sunrise if we had not seen a sunset? I think you understand what I am saying. Don't worry, I will survive, just as the 500,000 individuals who are paralyzed worldwide will survive, I believe, if they choose to accept their situations and understand the pain and pleasures it carries. Every hour of every day, another man or woman becomes paralyzed from a spinal cord injury which at sometime in his or her experience, will generate some form of pain, frustration, depression, and anger. But if one chooses to do so, he or she can find a silver lining on that cloud and experience the gifts that paralysis or any other illness for that matter, also manifests. I'll share more about the gifts of paralysis with you very soon!

Thanks for listening!
Scott

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