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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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  Home> Publications > QUEST >Vol 3 No 2 Spring 1996
UNTIL THE DAY I DIE
by Frank Davis

My name is Frank Davis. I've been working in the streets of Atlanta as a paramedic for 19 years. It's not an easy job. You get used to it.

That's not what I want to tell you about, though. I want to tell you about MDA, how I got involved, and how it came to be one of the most important things in my life.

About eight or nine years ago, I was watching the Jerry Lewis Telethon. Now, I don't have any family that have muscular dystrophy or anything like that. But I saw this story on the Telethon about MDA camp and somehow it got to me.

I called up the local MDA office and said I wanted to get involved, and my life hasn't been the same since. A lot of things have happened to me, including serving as president of MDA's North Georgia Chapter Executive Committee and heading up security at the local broadcast of the Telethon.

But the thing that had the biggest impact on me was being a volunteer counselor at MDA summer camp.

Having been a medic, I was used to being around people in wheelchairs. But this was something different. First of all, I had to learn how to "get past the chair." That means you stop thinking about the wheelchair and get to know the person. You don't feel sorry for them. You relate to them like any other person.


HOOKED ON CAMP

The first two summers, I had Tim. Tim was 15 and had Duchenne muscular dystrophy. I took care of him. Taking care of him means you're with him the whole week, eating with him, helping him shower, and sleeping nearby in case he needs something during the night.

Something about the experience just kind of got to me.

In between camp sessions, Tim and I would write letters to each other. The third summer, in 1988, the day before we went to camp, Tim died.

I still went to camp that year, but I'm not ashamed to tell you I cried all week. Tim had really hooked me. It was like if you lost somebody that you loved very deeply and you knew they were never going to be there again.

I had a new camper that week, Joey, another teen-ager. He and Tim had been friends. Joey was also in a wheelchair and had Duchenne. He saw how I was feeling and came up to me and said: "I know I can't give you a hug, but you're welcome to hug me if it will make you feel any better."

So that week, I took care of Joey physically, and he took care of me emotionally. We became very close. As with Tim, it was a year-round relationship.

I had Joey for three years. But eventually the disease got him, too. He started going in and out of the hospital for long stretches. On the weekends, I would go spend the night with him in the hospital room. He knew he was going to die. We even talked about his funeral, and that was one of the hardest things for me.

Once at camp we made nametags out of leather to wear around your neck. I gave Joey mine and told him, "when it gets too bad, I'll be here."


EXTRAORDINARY SPIRIT

A couple times, Joey's mom said to me: "Joey just loves you so much. He doesn't want you to feel bad for him." I guess that was the biggest thing about him, his spirit and the strength that he had. The same way with Tim.

I got a call early one morning from Joey's uncle. He said, "Frank, Joey died this morning at 5:30." I'll tell you something. Even when you know it's just a matter of time, it doesn't make it any easier when it actually happens.

When I looked at Joey in his casket, he was wearing my name tag from camp. When the casket was lowered, I became mad, angry, upset. I started kicking the dirt and throwing rocks. I'm sure people thought I was losing it.

As a paramedic, I've had quite a few conversations with God. This time, I was angry and hurt, and I said: "You got to do something about this disease. I am sick and tired of going through this. What are you going to do?" Later on, I told God: "I apologize. But this just ticks me off to no end."

I was just so enraged at what this disease did to Joey. There is a fire in my heart that wants to meet this terrible thing one on one. Sound crazy? Maybe. But then I've heard "Love Conquers All."

A lot of things happen at camp, things I'll always remember. Jokes. Tim used to like to put shaving cream in my ear while I was asleep. My thing was always to have a rubber snake. And then, of course, there's always somebody to stick a water balloon under your pillow.

Sometimes the kids get really ticked off at each other, bumping their wheelchairs into one another. Some of the new counselors are surprised to see that. "Look what they're doing!" they say. But I say, "They're human beings. They're just mad at each other." We've all been together so long, that if they get mad at me, they'll roll over my feet. If they roll over both feet, I know they're really mad.


A SPECIAL WORLD

Last year at camp, the kids gave me a collage of pictures of me over the years at camp and a card with a picture from "The Lion King." At the top, it said: "To the King of our jungle." I thought that was special, since our jungle consists of chairs and wheels and batteries.

Now they made me head male counselor, so I don't have any one person to look after. What my job consists of now is making the Gatorade and running around and making sure everybody has what they need. At the same time, I get to spend more time with all the campers.

Camp is that one time a year when you're in a world where there's no hate, no greed, no killing. Your back hurts and your feet hurt and sometimes you don't get much sleep. But when you ask a counselor "Why do you do this?" and they say "I don't know," then you know they're committed. It's just a feeling we have for these kids that's hard to explain.

I have told them I will always be there for them, through good and bad. They're part of me, and I'm part of them, until the day I die.

 

 
     
     
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