Spina Bifida 101

As I have mentioned before, I don't believe that my disability defines me. It does shape some of my perspectives, but it is not my identity. But, I have mentioned it in several blog entries thus far, and I wanted to explain, to anyone reading this, why I am in the chair.

I'm actually faking it for the parking, but don't tell anyone. :) I have a shirt with "Just in it for the Parking" on it, and I love to look at the reactions that I get from people when I wear it.

One of the reasons that I am going indepth about my disability has to do with a blog entry that I have planned for tomorrow. I have very few topics that I have planned out, and I'm actually being very stream-of-consciousness with how this blog will go. But, I have a very special entry planned for tomorrow, and an explanation of my disability will help you understand that entry.

I have always been disabled. I actually am very happy about that, because I have never known any other way of doing things. I didn't have a car accident, diving accident, get shot, etc. Actually I can't imagine how life-changing one of those experiences would be, and I am so thankful that I never had anything "to lose."

I was born with a birth defect called Spina Bifida....it is Latin for "open spine." Even though it has a very strange name, Spina Bifida is actually quite common. It occurs, to some extent in one out of every 1,000 births. Many people can have the mild form of Spina Bifida and not even know it--or show any symptoms.

Some people with very mild cases of it include--Hank Williams, Sr., John Mellencamp, and former Dodgers pitcher, Orel Hershiser. It is actually believed that Hank Williams, Sr. had more than a mild case of it. Some people believe that is why he was in constant pain, and why he became addicted to painkillers.

I'll try to explain my condition without getting overly technical. When I was born, one of my vertebraes was not fully formed. As you might know, the vertebral column protects the spinal cord. Well, a part of my spinal cord stuck out of the opening in the vertebra. When it stuck out of the opening, it created some nerve damage.

Spina Bifida is a strange birth defect, because it can affect people in so many different ways. The severity of the condition depends solely on where the lesion occurs on the spinal column.

Apparently my impairment is somewhat rare. Most people with my level of Spina Bifida are completely paralyzed in both legs. I, however, am only paralyzed in my right leg. I can't feel it, move it, or do anything with it. But, I have complete function in my left leg.

Having the ability to use my left leg has opened up so many things to me. I don't have to use hand controls in my car. I drive with my left leg.My car has two gas pedals. I use an aftermarket one that is located on the left side of the brake. When I push down on that one, a bar that is connected to it pushes down on the factory gas pedal for me. That keeps me from having to use my left leg on the regular pedal. It wouldn't be safe or comfortable.

I'm also thankful for being able to use my left leg, because I do have the ability to use crutches. I don't use them as often as I would like, but that is one of my goals. Also, being able to bear weight on my left leg makes it so easy to transfer in and out of my chair. I actually feel quite blessed that I do have those abilities.

But my right leg is basically dead to me. So, I do have to be very careful. In fact, I broke my femur when I was in college. I knew that I had done something very bad to my leg, because I heard a loud pop while I was stretching it. It also went into a position that a leg shouldn't go into.

I went to the health center on campus, and the doctor did not even x-ray it. He told me that I just tore some ligaments in my knee, and everything would heal in time--especially since I didn't walk on it.

That night my leg made a "clicking" sound everytime I rolled over in bed. When I woke up that morning, I had a huge bruise up and down my right leg--from the internal bleeding.

I went to see a "real" doctor, and he took an x-ray of it. He told me that I had snapped my femur in a pretty severe break, and that I needed surgery that day. My mom didn't want me to have surgery 3 1/2 hours away from the family, so my dad drove down to Springfield, MO to get me. Later on that evening, I had surgery on my leg.

I DID NOT FEEL ANY PAIN THROUGHOUT THE WHOLE EXPERIENCE.

A lot of people have the perception that people with disabilities are sickly. I have had many operations, but I feel that I am quite healthy. Fortunately there has never been a time where my parents thought that they would lose me and that I would die.

I had my first two operations the day that I was a born. The doctors had to close up my back, and then they put a shunt into my head to drain off excess cerebrospinal fluid.

Since that time I have had issues with my kidneys, which is quite common. So I have had many urological surgeries. Fortunately, my kidneys are actually much better than they were in the past. At one time, I was on a pathway to needing an eventual kidney transplant.

I have also had many issues with wounds that do not heal. This has to do with poor bloodflow to my legs. Some of the most emotionally trying times in my life have dealt with this aspect of my condition. In the late 80's, I had about 6 operations on my left foot. There was even a time where I thought I might lose my foot---and most of my left leg. And this is my GOOD leg!

I have a lot more that I can mention, but I have to mention the best comment that I have EVER received from a student. This came from an 8th grader who was TROUBLE with a capital T. But, she and I had a wonderful rapport, and I didn't have any problems with her. She said, "You know Mr. K, whenever I saw you last year, when I was a 7th grader, I would feel sorry for you. Now that I have had you as a teacher, I don't feel sorry for you anymore."

I got that comment about ten years ago, and it still makes me smile. THAT IS EXACTLY WHAT I AM GOING FOR. :)