Tuesday, January 10, 2006


Ten years ago, today, I lost a cousin to Muscular Dystrophy. He was 20 years old. I'm not quite sure what to write yet about him, so I'll just share bits of an essay I wrote about him a few years back:

I can’t remember ever not knowing that S had MD. As I understood it, his muscles didn’t work and it would probably get worse. My cousin R was the one who told me it would be fatal. “He probably won’t live to be older than 18,” he explained as we played catch one afternoon. I didn’t believe him. After all, R was prone to cuss - strange for a 9 year old - and punch me for no reason. When I asked my parents about it, they confirmed that people with S’s type of MD usually didn’t live long into adulthood. Suddenly, there was an expiration date for him stamped into my mind.

S had MD, but MD never had him. A speaker at his funeral commented that you’d enter a room S was in feeling sorry for him, but you’d leave the room feeling sorry for yourself. He was more than delighted to meet anyone who crossed his path. Rarely was he ever without a smile – unless, of course, he was quarreling with his sister. He was radiant, ready to discuss anything, play anything and full of jokes. If his outlook was ever dim, he hid it well. His favorite animal was the eagle. He tracked pro and college football with only slightly more diligence than he memorized biblical scripture. He enjoyed volunteering with, and participating in, Muscular Dystrophy Association sponsored activities. During his life, he befriended the head coaches of both a major pro football team and of a university football powerhouse; visited tourist cities on both coasts; sold concessions at PGA tours and worked as a representative of his city in the 1994 World Cup Soccer Championship. All this he did without being able to move his legs or upper body.

He had a great sense of humor. Some afternoons, he and his father would flip on Comedy Central for a few hours of “Mystery Science Theatre 3000”, just to add their sarcastic comments to the tasteless, low-quality films the TV show specialized in. Once, when I was visiting his family with my grandparents, his sister and I slept on the floor in S's room. With the lights out, the three of us talked in the dark about fire safety for some reason. We discussed emergency procedures. “But how would S get out?” his sister asked. You could hear the good-natured grin in his voice as he responded, “Just throw me out the window!” We all laughed so hard that my uncle had to tell us to quiet down.

The legacy of my cousin S inspires me to fight against nagging fears of incompetence, pain and against laziness. Though I may not be graceful, when I dance, I dance with joy and abandon, because I have been blessed with full motion of my body. When S laughed and loved, he did so with joy and abandon because he was blessed with full motion of his heart. Because I have been lucky enough to have a healthy body, I have begun taking care of it better. I even ran a marathon. On days when the run was difficult, and the weather was defeating, I'd imagine S on the sidelines cheering me on. He loved sports so much, and he would have been proud to see me run: particularly since I was always too insecure to pursue athletics, growing up. When a wheelchair-bound neighbor of mine missed bus after bus because none of the wheelchair lifts work, I e-mailed the city transportation system about the problem. Because my cousin S lived with dignity, I want everyone who is overlooked, to be granted the dignity a human deserves. Though there is an overabundance of enriching experiences to cram it all into one lifetime, I am learning to seek all of them that I can. I travel, I go to the theatre, I read books, I run, I swim, I act, I write, I volunteer. If my cousin could do so much, and enjoy so much, then I have no excuse not to.

... I never really wonder what his life would be like if S was still alive. I do wonder what his life would've been like if he had never had his affliction. My grandparents think he would've been the same person. Maybe. But I kind of doubt it. We are shaped by our experiences. If he had been healthy and ambulatory, he may have ended up just as whiny as the rest of us walkin' folk. I'm not glad my cousin was stricken, but I am glad for how his life touched mine.

When he died, all I could think to do was just be in constant prayer for about a day. I kept praying over and over to God: Thank you. Thank you for his life, thank you for his death. His death has really made me think of my own death and the eventual death of those I love a lot in the last 10 years. My cousin needed to die. At the time of his death, I was emotionally prepared for my own and for that of those around me. We like to think of death as a bad thing but it's not always. But, now, pushing 30, I find I fear death more than ever: both my own and that of my loved ones. Probably, because ten years on, I now have to take care of myself more than I did in 1996, and because I have a mate to care for. I want to learn how not to fear death. I want to learn to embrace it when it comes, whether it's a slow, painful encroachment or whether it's swift and unexpected.

Until then, I want to learn to live with the unfettered happiness of my all-too-fettered cousin.

1 comment:

fitnessinstructor said...

After reading your blog discussing this post I thought you might like to see my resources on wheelchair accessible apartments in cambridge ma