Spondylitic and down on his luck
For its fundraising campaign for its Good Neighbours Fund, the Roanoke Times profiles Ricky Stallings, a 44-year-old man with ankylosing spondylitis whose life story is the ne plus ultra of worst-case scenarios: he had to stop working, got divorced and ended up homeless, on disability and unable to give music lessons because he pawned all his instruments. I'm uncomfortable with uplifting stories about the disabled because I think it's inappropriate to draw inspiration from other people's suffering. This story doesn't even qualify as uplifting. Granted, it's meant to be a case study for a good cause, but my first reaction was to take offense. Now that I've thought about it, though, I may have been offended by Mr. Stallings's condition, not necessarily how he was portrayed: I'm angry that this happened to him. And, at the same time, it hits too close to home for me: "there but for the grace of God" and all that. It scared me, pure and simple.
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I understand the fear. Early in my disease, when I still had a bamboo spine that made most people think I just had a stiff neck and incredibly good posture, a man with more advanced AS approached me in a mall just to say hello and express camaraderie. I chatted with him, learned from him and actually appreciated knowing I wasn't alone on one level, but I also had an upwelling of uglier emotions. I was horrified that he could tell I had AS, terrified that I might become like him, bent over and barely able to walk even after hip replacement surgery. He had the consolation of being able to bike ride.
Fifteen years later, I am bent over, often unable to walk, and unable to ride even a recumbent bike. I can still work however, and although my personal life was severely damaged by the disease at one point, I have the love of family and friends as well as the respect of colleagues. I have even been able to travel across the country alone, something I never thought I would get to do.
I suppose the lesson in all of this is that we have to keep looking for daylight, no matter what our circumstances are. Even if our worst fears come through, it's only the end if we stop trying.
Posted by
Professor Kim (1/25/2005 7:45 AM)
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