Chronically-ill People Are More Than Our Disease

When I was in DC in May for ALS Advocacy, we had a candlelight vigil at the Washington monument our first night there., I, along with other delegates from the New York area, met up with Richard Cohen, Cohen is the husband of the Today Show's Meredith Vieira. Richard was in the process of writing his book, which is now released. Called "Strong at the Broken Places", it is an account of five people who are living with chronic diseases. Richard himself has multiple sclerosis.

One of those five people, Denise Glass, is living with ALS. You can watch a video online about the book, and Denise at http://www.msnbc.msn.com/id/21134540/vp/22537340#22537340

The Today Show has been profiling the five people from Richard Cohen's book all week. According to Cohen, the book shows that chronically-ill people are not their disease and should not be defined by a set of symptoms. He also says that, although the book deals with the changes that come about as a result of a chronic diagnosis, the person inside is still there. Amen!!

I have been living with ALS/Lou Gehrig's Disease for almost four years now. I am in a wheelchair and talk with a computer - I type the words and the machine speaks for me. I admit that those who interact with me need to have patience. For one thing, I am often five minutes behind in any conversation. Although I have gotten pretty fast with the computer, my mouth used to run about 100 times faster [I was a fast New York talker, I admit] When I eat, I limit myself to soft foods, and I have trouble pushing the food around in my mouth. Oh, and I do that slowly too. So when I do go out to eat, I try to order smaller portions than everyone else,. Otherwise, my dining companions are finished about an hour before me, and have to keep ordering extra drinks while I "catch up"

But, inside, I am a person like everybody else. True, I can't go to the gym or do a lot of the things I used to do. But I can do a good many of the things I used to, and a lot of the things my friends are doing. I can still go to just about every movie house, theater, restaurant, bar, store, and museum. I follow popular culture, news, and the upcoming election. And just as before, I can still listen to others' problems, gripes, and gossip.

And yet, I have lost most of my friends. And the ones who are still in my life, treat me differently. They walk on eggshells around me. They have said things like "I don't know what to say", or they go out and do things as a group which, in the past they would have included me in. But, suddenly, I am the sick friend. If they do come to see me, they rush in and rush out, usually on their way to or from somewhere else. Oftentimes, they are so nervous and fidgety that I don't know who is more ill-at-ease - I or my visitor. Sometimes they are shocked to hear that I have gone out to the store, or even that I am out of bed and fully dressed!

Yes, I know. It's they that have the problem. I know that I shouldn't worry so much about how other people feel around me. I am supposed to understand that it's tough for them to see me "like this". Well, it's hard for me to be "like this". And it's even more difficult to deal with the loneliness and isolation because other people "can't handle" my illness.

I am not my disease! I do not sit around talking about my ALS, unless people ask me. As a matter of fact, I would rather talk about almost anything else but my ALS. I go to two monthly support groups and I talk to other ALS patients by email, and in online groups. And one thing people fail to realize is this - the less you see me, the harder it gets. I find that the few friends who see me the most are the ones who feel totally comfortable. They come, go to Starbucks with me, and together we explore the issues of the day - the election, the news, our favorite movies and TV shows, among other topics. And we even have fun!

I have always been a very social person, and that hasn't changed. What has changed, however, is that I have had to stop driving. The easiest way to get anywhere too far to drive my motorized wheelchair, is by paratransit van. This service is available to me in New York City for a reasonable fare, and I can even bring a guest. There are wheelchair lifts on the vans, and on all city buses. It is really not too difficult and it lifts my spirits just to get out of my tiny apartment. I just wish other people could see it that way. I wish more people could see the person in the wheelchair.