Paralysis - My Perspective

February 19, 1997

The other day when I returned from a chiropractic and auricular therapy session, both of which I will discuss with you in another journal entry shortly, I decided to soak in a jacuzzi for a while. At that very moment, I thought to myself, "What impact would my journal entries have if nobody knew what my experience of being paralyzed was like?" It's important that you get a general sense of my condition so that you can relate on some level to my trials and tribulations during the course of my journey. Now for those of you who are also vertically challenged, please remember that this is my perspective and that each paralysis case is different. 
It was on the night of December 28, 1985, when I first came face to face with paralysis. If you recall, I woke up that morning with a numb big toe, similar to the feeling you get when your foot falls asleep. I generally refer to that sensation as pins and needles. Anyway, it was not at that moment when I began to have my movement taken away from me. That night when I woke up in the middle of the night to go to the bathroom, still very much asleep and groggy, I swung both legs out of bed and proceeded to the bathroom. As I attempted to take a first step with my left leg, it did not respond and suddenly I felt myself falling, face first onto the wooden floor. Crash! My face slammed to the floor with my hands absorbing some of the fall. There I lay, crying on my bedroom floor, thinking, "What is happening to me?" Quite to my surprise, my parents did not hear my fall in the next room. Slowly, I pulled myself back into bed, using my right leg which was still at full strength. There I lay, examining my left leg, massaging it, pinching it, and finally just staring at it. It was at that moment that I first felt detached from my body. No matter how hard I tried to move it, no matter how hard I willed it to move, no matter how much adrenaline I had boiling inside me, it did not matter. It was as if my left leg was now on autopilot. That night in December was probably one of the scariest nights of my life. 

Twenty-four hours later, I recall lying in a bed at Mountainside Hospital in Glen Ridge, NJ, and looking down at my legs and saying to myself, "They're taking a break, you guys rest." I had really pushed myself hard up to this point in my life, and I thought my legs just required some time off. At 16 years of age, never did I think that this was permanent. It was about a month later that my mother approached me at the Kessler Institute for Rehabilitation in West Orange, NJ, after returning from a visit with my doctor and just looked at me with tears filling her eyes. I said, "What's wrong, Mom?" She looked me straight in the eye and said, "The doctors have diagnosed what has happened to you and said that you will never walk again." I embraced my mother as she cried. For some strange reason, my tears would not flow. About 5 minutes later, I asked her if she was alright and told her that I was late for therapy. As I pushed my wheelchair towards the exercise room, it hit me for the first time. I was paralyzed. Thoughts of never being able to run up and down a basketball court ran through my mine, never being able to run up and down the beach soon followed. As I entered the exercise room, my therapist and now one of my best friends, Lisa Crilly, greeted me with her soothing smile. She knew something was up. When I told her, I could tell that she was upset, but she understood paralysis much better than I did. That's when I put my game face back on and engaged myself in the game of life once again. It was one of many challenges to come. But as my friends will tell you, I thrive on challenges. 

Eleven years later, I still have no movement in my legs, but still tolerate the pins and needles. When I first described that sensation to doctors, they suggested I take some medication to numb the intense feelings. Since I told them that the sensation was about ten times more intense than when one's foot falls asleep, they probably wanted to spare me of the constant pain. I, on the other hand, did not view this as pain. On the contrary, this "electricity" represented messages still getting through my spinal cord to my legs. Why on earth would I want to suppress this feeling, any feeling. If I really focus on the pins and needles, and nothing else, then it can become quite bothersome and painful. But there are too many pleasures in my life to let this sensation control me. So I control it. The pins and needles can also be analyzed as a protective mechanism. On two occasions, while transferring in and out of my wheelchair, I have twisted my ankle. How did I know? Well, I did not know that I actually twisted an ankle, but on both occasions I felt an intensity in the pins and needles and it alerted me to a problem in that area. Pretty strange, huh? In 1987 during an electrical storm, the pins and needles became so intolerable that I was rushed to the emergency room. During the storm, my legs were bouncing and dancing all over the place. I felt as if Freddy Kruger was inside my body. Once again, my body was on autopilot. It was going to do what it had to do. As the storm passed, the pins and needles returned to their normal intensity, and once again my legs were motionless. Maybe I should have entered a dance contest for that brief half hour! Just kidding! 

Now when I look at my legs, I see them as a part of me. Everything is there except muscle tone. If you have ever been bed-ridden, or have not worked out a significant period of time and saw your legs or even your arms atrophy that is what it is like to look at my legs. The blood is still circulating, the bones are still in tact, the tendons still need to be stretched. The signal from the brain to that area of the spinal cord that controls leg movement has been disrupted. My friends at the Miami Project to Cure Paralysis best describe the spinal cord as a telephone cable. Once that cable is damaged, the messages can no longer get through. So you may be saying, well, a telephone cable can be spliced back together. Yes, that is correct, but the spinal cord can not be fixed that way at this time. But trust me, they are making significant strides in reconnecting the spinal cord. 

Paralysis has also affected the rest of my body. Thankfully, the progression of my paralysis stopped just about an inch above the belly-button or the T-7, T-8 section of my vertebrae. Back in 1985, doctors were afraid that the paralysis would spread to my respiratory system and thus, forcing me to be on a ventilator. Fortunately, it had run its course and I was spared any further loss of movement. Considering that out of the twelve cases ever documented back in 1985, seven of the cases started in the brain and moved downwards, I was very lucky, very lucky to be alive today. Since I am paralyzed from T-7, T-8 down to my toes, I do not have control over my lower abdominals, thus, my balance and mobility in my waist is also limited. For example, when I am lying flat on my back and want to sit up, I must grab onto the bed to help lift myself up. My upper abdominals are strong, but the lower ones allow you to execute this motion. Needless to say, I can be pushed out of my wheelchair quite easily. That's a good thing to know if I ever get you upset! 

Now let me ask you. When you see someone in a wheelchair, what do you think his or her limitations are? I know not all people in wheelchairs are paralyzed, but let's just say we are focusing on those who we know are paralyzed. Correct me if I am wrong, but you probably say that person just can't walk. Not to say "just" can't walk as if it were no big deal, but simply that's what his or her limitation is. Well, in my opinion and of course I can not speak for everyone, but that is the easiest part about being paralyzed. The simple act of walking is important to me, but not as important as being able to go to the bathroom on my own or have my own children someday. Unfortunately, these normal human functions are altered as well. They have not been totally taken away from me, but have been altered. Thankfully, given my particular situation, I have not been totally stripped of these freedoms. Knowing that someday, I might be able to father my own child is of utmost importance to me. 

Children are the meaning of life! But because these freedoms have been altered, they serve as constant reminders that I am paralyzed. Climbing into my wheelchair every day, driving with hand-controls, sitting in a chair while showering, asking for help in the grocery store, allowing more time to get dressed and undressed, or any other adjustment to life that paralysis has produced has not altered my life dramatically. Yes, they are more time-consuming and sometimes a little more strenuous, but they are day-to-day rituals that I have accepted for eleven years. If I am affected negatively by any one of those acts that my paralysis has produced, I simply say to myself, "Scott, there is always someone worse off than you are, so learn something from this experience and move on." My dear friend Marc Buoniconti, a quadriplegic since 1985, has served as an inspiration for me and often comes to mind when I am having a bad day. You see, Marc is paralyzed from the neck down to his toes. He has no movement in his arms or legs. But you know what? He has one of the biggest hearts and most incredible minds I have ever known and therefore, in my book, he is complete. Thoughts of him will be a source of energy for me along this journey. That is a given! 

I am hopeful that by this point, you have a better understanding of my particular situation. If you do not, join the crowd. Not a day passes that I am not amazed by how my body feels or reacts. If you want to know what a paraplegic, like myself, has to go through during the course of a normal day, try these simple exercises: Getting dressed in the morning without moving your legs, borrowing a wheelchair and going to the grocery store, swim without moving your legs, shoot a basketball in a sitting position, or simply try sitting for just ten minutes without moving your legs at all. These are just some exercises you can do. But just remember, once you have completed one or all of these exercises, you will go about your normal business. For me, they have been daily exercises for eleven years. But you know what, I am going to change that! Thanks for listening! 

Scott.

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