Before I start writing my little essay I would like to make a couple of things clear: Firstly, I accept the fact that I must use a wheelchair. My explanation to people who ask why I am in a wheelchair is simply that I have multiple sclerosis—an accident of life and nothing else. Secondly, and for me something that is obvious, is that I would much rather not have to use one. I don't feel sorry for myself; I would simply rather not be in my present physical state. I accept the reality of my state of being but that does not mean that there are not times when I look back to when my method of locomotion depended on flesh and blood rather than rubber and metal. Over the past years, there were times when I felt as if I was someone out of some Kafkaesque novel, where the character wakes up one morning to find his legs have changed into wheels.
Of course, that's not what happened to me. The change was gradual, a sort of devolution. My family and friends have seen the change and understand what has happened to my body. All of the questions have been asked and any of the unease has melted away. I have developed a rote answer to the question, “How are you?” I find it far easier to simply say “all right” rather than get into a description of the fairly constant discomfort I feel. While the question as to how I feel may be a show of genuine concern, there is no point burdening people with an answer that has in and of itself no solution. If I were to tell someone that there are nights when I'm unable to sleep because of leg spasms, what possible use would it serve? I do what I can to alleviate the symptoms of my disease. I see no dishonesty in my responses. I find it a lot easier putting people at ease by, at times, making light of my situation.
It's very odd, but it seems that some people I know have more difficulty dealing with the fact that I have MS than I do having it.
People seem to apologize for no reason at all. I can be wheeling down the aisle of a grocery store, and simply say excuse me to someone who is in my way. More often than not, that elicits a response along the lines of, “Oh I'm so sorry.” It is as if someone had just done me some great injustice. I can tell that the apology has little to do with the incident and more to do with my being in a wheelchair. Why a total stranger would apologize for my having multiple sclerosis escapes me. Perhaps I've become inured to my condition and see it simply as a part of myself. Getting into my wheelchair in the morning is a routine that I see as part of my getting dressed. It is as significant, or perhaps as insignificant, as putting on my socks.
I had hoped to finish my little story much sooner than this, but events outside my control made that impossible. I spent the last two weeks at a local hospital getting a rather large kidney stone dislodged. I hadn't planned to have any landscaping done around my house this summer, but with my new collection of stones I thought I might put up a garden wall. My kidney stone wall in the yard—I thought it would be kind of unique…
Now back to the wheelchair.
This essay came about as a result of my watching a PBS show, which had as its focus people who have “made the best” of physical shortcomings that occurred as the result of either disease or accident. The individuals who were on the show performed far above what would be expected for any able-bodied person. For the most part, the program dealt with individuals who use inner strength to overcome physical handicaps. I have to stop here for a second. The use of the word “handicapped” seems to fall under that sometimes very stupid umbrella of words or phrases that may be considered politically incorrect. If I say that I am unable to walk because of paralysis is there something wrong with that? Should I instead say that I suffer from a motion deficit? Why is it so difficult to state the obvious? Your state of being and how you deal with it are two very different things. Self-pity or bitterness is a waste of both physical and psychic energy. Do the best that you can with whatever resources you may have. Everyone also has the right, even in the most limited way, to control their own destiny. Sometimes it becomes necessary to decide whether or not one chooses to live a life where true physical suffering far outweighs the mere act of taking a breath. Of course that's a personal decision, and I believe everyone has the right to make it.
Sometimes, what is needed is help that lies in the background. Jerry Lewis poster boys are an insult. An individual with a disability, no matter what the type, does not need to be treated as if he or she is an alien being visiting this planet. What he needs is to be given all the tools necessary to allow the individual to develop as a human being. Why is it that there never seems to be a show on TV celebrating the lives of common men? Everyone seems to be marginalized by the way they are categorized. “Special needs” is a phrase that seems to appear everywhere. My name is not “Special Needs” it is Brian Segal. The fact that I do require assistance at some time or another is immaterial. The chromosomes that make up my genetic makeup are almost exactly the same as any other person on this planet.
Most people are not “special.” They're like the vast majority who occupy this planet. Sometimes all that people need is to be treated like anyone else. That, more than anything, can make you special.
I apologize for the somewhat disjointed nature of this short essay, but like the old Russian peasant proverb says, “Life is very very hard, but fortunately, it is also very very short.”
Brian Segal is living in the country north of Montréal. He was diagnosed with multiple sclerosis about 16 years ago and, when asked, tells people he is retired (It sounds a lot better than telling people you are on disability insurance). He is happily married, no children, but one very friendly husky cross. He also has the good fortune of living in his own home, not a home.
Also on Irked: If you enjoyed this essay, you might also like…
My Four Weeks on Another Planet, by Brian Segal
Some Musings on Using a Wheelchair, by Brian Segal
Miracle Cures! by Brian Segal
Too Tired For Insomnia, by Brian Segal
My (Mal) Adapted Van, by Brian Segal
