Gregory Freeman: A Form Of Muscular Dystrophy Is Making Changes In My Life - But The Pity Party Is Over. StL P-D 9/3/2000

Headline: A FORM OF MUSCULAR DYSTROPHY IS MAKING CHANGES IN MY LIFE - BUT THE PITY PARTY IS OVER
Reporter: By Gregory Freeman

Publication: ST. LOUIS POST-DISPATCH
Last Printed: Sun., Sep. 3, 2000
Section: METRO, Page: C3, Edition: FIVE STAR LIFT

If someone had told me 10 years ago that I was going to become disabled, I would have disagreed vehemently.
   Just 10 years ago, I could climb several flights of stairs without skipping a beat. Just five years ago, I could go for walks on Sunday mornings all the way around Forest Park.
   Today, I have difficulty climbing steps, and if there's no handrail, I can't climb them at all. I can walk for about a half block before my legs tire out.
   I've developed a form of muscular dystrophy, called limb-girdle muscular dystrophy. It affects me mostly when I walk, try to climb stairs or stand from a seated position. I can do all of those things, but they take more effort than they used to.

It's taken me a while to come to the realization that I am disabled.
Part of the reason, I suppose, is that I don't want to be pitied.
The other part is that our society looks at people with disabilities as broken people. Because you can no longer do one thing, people sometimes erroneously assume that you can do nothing. I can do just about everything I could do before, although I sometimes have to approach the task a bit differently.

For a while, I tried to hide my disability. When someone once commented that they had noticed me walking with a limp, for instance, I told them I had taken a fall. I preferred for them to think I had fallen than think that something was wrong with me.
I have taken to occasionally using a cane, but I tried to keep people from knowing it. The only time I would use it was when I was in places where I thought no one knew me. God forbid anyone should know that I needed a cane. I'm still a bit self-conscious about that cane, but I use it when I feel I need it.
When I talked to my doctor about getting a disabled hang-tag for my car, I was disturbed when he suggested a disabled plate instead. A hang-tag seemed temporary; there was something permanent about an actual plate.

My disease is genetic. Although no one in my family has had this, my parents apparently had the genes to carry it. And unlike the muscular dystrophy that we generally hear about that children are born with, this type often doesn't affect people until they're at least 30.
   I first noticed my trouble seven years ago. I remember having some difficulty climbing stairs. I pretty much ignored it.
   Over time, though, other things started happening. It became difficult to put my arms up over my head. My right leg felt a little weaker than my left one. Something was wrong.
   Doctors took a couple of biopsies, but were unable to diagnose my disease until recently, when new tests enabled them to determine what I have.

No one was more shocked than I to learn that I had muscular dystrophy, although you can believe I'll be watching those annual Jerry Lewis telethons much more closely from now on.
From what I've learned, there's not much that can be done for me right now. No pills, no shots. My only hope is that scientists someday develop a protein that could limit the disease. Until then, the disease could remain at its current level or continue to attack my muscles to the point that I'll need to use a wheelchair.
The good news is that it doesn't affect life expectancy, and doctors doubt that it will affect my hands or fingers. So I'll be able to type, no matter what.

As you might imagine, I sank into a real depression while the news sank in. I started eating less and often drifted into deep thought.
Why did this happen to me? I asked myself. Was it something I did when I was younger? Should I have done something different? Were my parents to blame?
I ultimately decided all of those questions were off-base. The disease is genetic, so there's probably nothing I could have done to stop it. And while my genes came from my parents, I certainly don't fault them - after all, without their getting together, I wouldn't be here.

But becoming disabled has heightened my sensitivity to the issues often advocated by disability activists.
I look for curb cuts. They make it easier for me to step onto a street. When I enter buildings, I look for elevators and am chagrined when some buildings don't have them. I'm grateful for parking lots that have accessible parking.
I was aware of all these things before. But my awareness has sharpened because of my own disability.

After throwing a brief pity party for myself, I've concluded that I'm not going to let this disease control me; I'm going to control this disease. I've always enjoyed being busy, and I'm going to continue to do that.
I've got a lot more living to do, and a lot more stories to tell.
Life for me is changing, but, fortunately, it goes on.

Daniel Schesch - Webweaver

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