Get uncomfortable: Join the battle against MD
January 5, 2005
I am glad that you will never read the versions of this column that I didn’t finish. I tried about a dozen different ways to approach the subject. None of them came close to the objective.I started each attempt with the best of intentions. I was just going to get straight to the point. Then, a few paragraphs into it, I would verge sharply away from where I needed to be heading. I vowed to do an interview, but couldn’t. The young interviewee was willing; I didn’t have the strength, which is ironic and pathetic as you will see. When I was first presented with the idea a few weeks ago, I knew I was going to write about it, there was no way I could not. But, three weeks of contemplation have resulted in nothing, except tears. The problem is that this is one of those topics that is so terrifying that you can’t bring yourself to talk about it, because it’s a real thing. It’s an awful thing that does happen. It could happen to you. And, as I recently found out, it happened to someone I know. And, that person just happens to be a child. And, the next person it happens to will be a child, too. And, when a child is sick, it is devastating to a family at first, and the community they live in next.My friend Ian Sharp has muscular dystrophy. He’s eleven.I’ve known Ian’s parents for a long time. I got to know Ian a little better this past summer when a few families went on a camping and fishing trip to a cabin in the mountains above Ruedi Reservoir. Ian’s a good kid. He’s intelligent. He’s funny. He’s got a big heart and a kind soul. Other kids like to hang out with him. He smiles a lot. He reminds me of another little boy I knew when I was just a boy myself. He was my neighbor, John Keleher. He had muscular dystrophy, too. John was a few years younger than me. I remember when he first moved into the neighborhood he walked with a limp. He told us that he had muscular dystrophy. It didn’t mean anything to us, because it didn’t seem to mean anything to him.As time passed, John needed crutches to help him walk. Crutches weren’t unusual for kids our age. It seemed somebody was always hobbling along with a sprained knee or twisted ankle. We knew he wouldn’t need them for long. Unfortunately, we were right. It wasn’t long before John graduated to a wheelchair, and then to a wheelchair with a motor. It was then I realized how serious his condition was. I remember one Labor Day weekend around that time spending hours watching the Jerry Lewis Muscular Dystrophy Telethon. It was an event I was sure would help them to find a cure to get John out of that wheelchair. I watched the dollar counter rise as the pledges came in. I cheered quietly as a new record was set for funds raised. In the days that followed, I waited and watched the news for the story telling us that they had used all of that money to discover a cure. Eventually, I lost interest waiting for the news that would not come.One of the last memories I have of John is baby-sitting him and his younger brothers. I despised baby-sitting and refused to do it, except for them. It was the only thing I could think to do that might help. I remember lifting him into bed that night. He didn’t have enough strength to move his own body into a comfortable position. With the help of his brothers, I arranged his arms and legs at his direction. We tried to arrange his head comfortably on the pillow. He was frustrated and I was frustrated, but he kept on smiling. I felt completely helpless. I should have counted my blessings. He was completely helpless. But, he had learned to live with it. In all the memories of my youth, very few come back to me with as much clarity as the one I just described to you. I’ll never forget that night and I’ll never forget John’s cheerful disposition despite the lack of fairness in the world. That’s the scene I recalled when Ian’s mother told me her son had MD. That’s the reason tears filled my eyes when I read over and over again in doing useless research for this story that – “There is no cure for muscular dystrophy. Treatment is based on controlling the symptoms of the disease, thereby allowing the person to have the best quality of life possible.” That’s not acceptable! After half a life not lived ago we are still limited to making people comfortable with this disease. That is not possible! Unless you just ignore it, nobody can be comfortable when an incurable disease exists that affects mostly children. Nobody can be comfortable when a family suffers in uncertainty. Nobody can be comfortable when a child’s mind, imagination, and soul explore all of the magical paths through youth and an unwilling body refuses to follow. Ian’s mother told me that there is incredible new research being done on MD. Some of the brightest minds in the world are focused on finding a cure. There is hope. But, it will remain only a hope as long as we all are comfortable with that.Next weekend you have a chance to be a little uncomfortable. The Hike for Hope is a race/walk up Buttermilk beginning near Bumps restaurant that will be held on Sunday morning at 7:30 a.m. The organizers will have a float in the Wintersköl parade with a silent auction and cocktails to follow at Vectra Bank from 4-7 p.m. on Saturday.I hope to see you. You will hike because it is fun. You will hike because a lot of your friends and neighbors will be hiking. You will hike because you can. Most of all, though, you will hike because there is a kid out there who can’t. Roger Marolt believes we can make a difference. Please make your tax deductible contributions to Hike for Hope – 24 Hours of Aspen Foundation, P.O. Box 9306, Aspen, CO 81612.
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