No One Wants Scleroderma
Today was the 12th annual, Stepping Out to Cure Scleroderma walk by the Southern California Chapter of the Scleroderma Foundation. It was a roaring success. I am in awe of these amazing people who get together every year not just to walk, but encourage those fighting and remember those we have lost.
This year, I arrived at noon. I could see people dressed in teal shirts hugging their goodbyes and packing their camping chairs and tarps into their cars. Once again, the walk was a wild success.
I met up with some friends I only see at walks. It was great to see them and was really the only reason I went. But isn’t that why everyone goes? To show support for each other and visit? My feet had been hurting, and I didn’t feel much like walking. Yet I still took a walk through the park with my dog, Murphy. I felt guilty about not coming to the walk earlier, because as much as my feet hurt this morning, it felt good to be walking. As I walked away from the festivities, I felt better. Then, I realized my true reason for not getting to this walk on time. The truth is, I don’t want to be there.
I enjoy the people. I enjoy the food. I just don’t want to be there as a scleroderma patient. And this doesn’t feel like a pity party, it just feels honest. Look, no one there wants to be a patient, or know someone who has it, they just handle it more socially than I do. And friendlier. And less whiny-er.
I don’t like walks because I don’t want to be a patient. Maybe it’s more about my social skills. Or that most of my life involves doctor appointment. I have missed so much time with my son because of appointments and tests. This is the last week of school for my son. I won’t be able to attend his awards ceremony because of one of four appointments I have this week. Yet, I’m still able to make time to do stand up comedy. It’s really the only thing I have been doing not related to medical appointments, without my son.
It’s funny because I go to my classes, and perform to get do something not related to scleroderma. Guess what my topic is in my routine? Scleroderma. WTF?? I have to talk about it because my hands are obviously damaged and it needs explaining. And I have to talk about it because it is at the forefront of my mind. I’ve gotta get all of this our of my system so I can talk about something else, for corn’s sake! But in order to talk about something else, I suppose I should do something else.
If you skipped to the end…
I don’t want to have scleroderma, or live with the damage it has done. I would like to change it. I hope I don’t get snubbed at walks because I hate going. It’s really not about the event itself. Not liking to be at events is about not wanting scleroderma. Duh. No one wants scleroderma.