April 28, 2001
Everyone always told me I looked just like my dad. And now, sadly, I knew I did.
All it required was slipping into a wheelchair. As I gulped deeply for air, fighting off the panic, I wondered if that's what he had done his first time.
I knew this would be hard. I didn't know it would be quite this hard.
I was participating in a program the National Multiple Sclerosis Society calls "Adventures in Accessibility." It was one of those awareness exercises, in which you walk in the shoes -- or, in this case, wheel in them -- of someone with a disability.
I had some awareness going in. My dad had MS, in its most virulent form. Listing only the worst symptoms, he was blind, couldn't walk and eventually even lost much of his cognitive ability. It may not surprise you that on some mornings -- not every morning, but just occasionally -- I hold my breath until I successfully swing my legs off the bed and walk away.
During my simulated MS adventure -- you haven't lived until you've ridden the RTD in a wheelchair -- I was struck by more than the fact that city sidewalks slant so that, in a game you may not want to play, your wheelchair is always in danger of heading directly toward the traffic.
What I kept coming back to, with each nuance I learned, was that my father and I had never discussed what it was like for him. Or for me. In those days, I guess you just didn't.
In fact, I did something else entirely. When I was 10, my father came home from work with a cane. And I ran away.
It wasn't only that I couldn't stand to see my father -- brilliant, funny, strong, completely unwilling to lose at anything -- as somehow no longer invincible.
It was -- I think I have this right; remember I was only 10 -- more that I knew he couldn't stand for me to see him that way.
Eventually my mother explained to my sister and me that my father had MS and that it was a disease with remissions and that he might soon be better.
He wasn't ever better. There has been much progress in treating MS in recent years, particularly with medications that help prolong remissions. MS is a progressive disease in which the immune system attacks the central nervous system, but as many as two out of three do not lose the ability to walk.
In my father's case, he moved quickly from cane to wheelchair, from wheelchair eventually to a life spent mostly in bed. When I would read him the newspaper, we would never quite mention that he couldn't see. When my mother and I pulled his wheelchair up the front-porch steps -- it was another few years before we got a house with ramps -- he would politely thank me and I would not know how to reply.
Over the years, as he grew increasingly fragile, we talked about everything -- books, politics, sports -- except MS. We laughed some. We never cried.
Maybe that's why I decided to do the MS-awareness trip. Nearly 30 years after his death, I'd at least start the conversation.
We were put in teams of three. One person had MS. The others, a volunteer and a media person, were given MS-style symptoms. I couldn't walk, thus the wheelchair. My vision in one eye was blurred, with the help of Vaseline smeared on my glasses. I had trouble holding onto things, which I simulated by wearing baggy garden gloves.
Our mission was to get on a bus to go to the post office to mail a package. We were to cross the street to a gas station to buy orange juice and make a call. We were to get another bus to the YMCA to retrieve an item from a locker and to discuss exercise programs. We had two hours. If I had been alone, I'd still be out there.
I was lucky enough to already know the important stuff. Even before I met teammate and guide Kay Stewart, who rode in a scooter and was diagnosed with MS 15 years ago, I knew that people who couldn't walk were simply people who couldn't walk, that people with disabilities should not be objects of pity or objects at all.
But I was struck by a couple of things. People stare. Many offer to help, whether you want them to or not. When I used the lifts to get me and my chair on the bus, both drivers were helpful and friendly and didn't seem to mind that I was putting them behind schedule. I couldn't help feeling guilty. And a little helpless.
Also, you can't always find ramps. And that at the top of steep ramps, you can't always open the door. Put yourself in a wheelchair, and it starts to seem like a bad joke. At the YMCA, we had to take a one-chair elevator to the basement, go through a maze of narrow passageways, until we found the exercise room. Since I was using a manual wheelchair, I couldn't help asking whether the trip was the exercise.
When the two hours were up, we sat down to lunch and discussed our day. One guy even ran into a street preacher who wanted to heal him. But I knew I wasn't healed.
As I pushed out of
the wheelchair, what I couldn't push away was the image of my father and
me. On the other hand, this time I didn't run away.
Mike Littwin's column appears Tuesday, Thursday and Saturday. Call him at (303) 892-5428 or e-mail him at firstname.lastname@example.org.