Sunday, February 1, 2009

What if?

I love learning new things. This weekend I had the chance to go to a 10 hour workshop on using video in religious services. My two companions were taking the audio workshop. Early Saturday morning, we made our way to the breakfast buffet. The sausage tasted a little funky, but I thought maybe it was turkey sausage and that accounted for the strange taste. I had a few bites, asked one companion to taste it, and we agreed maybe the sausage needed to go into the circular file! About an hour into the workshop I felt dizzy and headachy and nauseous. I put my head down. Someone asked how I was feeling and I muttered that my head hurt and put my head down again. My team went out to make their 30 second commercial to get people go come to a church work day but I stayed behind, head on the table.

By the time we got to break it was pretty clear that breakfast was on its way back up. Mission accomplished, I felt a tad better but decided to nap in the car for half an hour and then return to the workshop. The leader asked how I was, and I said cheerily, “Well I lost my breakfast and think I will live.” Later, when the groups were editing, the leader dropped by where I was sitting and complimented me on “being a trooper.” I replied, “Well, I have lupus and people with lupus and other chronic diseases are used to feeling lousy, so we just keep going. After all, the alternative is to give up and I am not about to do that.”

When I was at my sickest, I was lupus. Linda ceased to exist. Slowly, over a period of six years, I created a new identity. A small part of that identity includes lupus. I have become something of a one woman lupus awareness campaign. But this was different. I realized that maybe lupus has a little bigger place in who I am that I would like to admit. Tonight is Super Bowl Sunday but I am watching a House Marathon. Football is not my cup of tea, even though Super Bowl is happening just 2 miles from my apartment in Tampa. One of the doctors told a patient that she was letting her illness define her. These two things-what I said to the workshop leader and that line from House-made me stop and think. What if my or your disease got taken away today? How would you define yourself? We struggle through all these stages of loss and grieving to come to a place of acceptance and even transcendence when it comes to disease. Knowing that our condition is forever, we find ways to integrate it into our lives and personalities. I suspect that if we were miraculously cured, we would have to rebuild our identities yet again.

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