I can’t believe it’s been so long since I have posted. I have been writing posts, but they have been a bit angry. You see, I prefer not to talk about having scleroderma, or living with it. I prefer to write about it, but then I get on stage and make fun of it.
I recently told a fellow scleroderma patient on FaceBook, that I don’t think of scleroderma as a terminal disease. After reading it, I felt like an a**hole, but I guess denying the death part, helps me get through living with it for so long.
For years, I was in pain. I kept asking for it to be over. Then I realized scleroderma would be gone when I’m dead. I rather enjoy being not dead, but who doesn’t?
Then I see patients who are dying wearing oxygen canula, and I think to myself, “I’d rather die than do that.” Then, I remember the people who love me and I wonder what I would really do. I talk a good game. I don’t think I would have the ovaries (or balls) to live with major obstacles that would make me walk slow, or have someone else help me. Well, I could walk slow, but I couldn’t live with someone who took care of me. I’d have to have someone help me, but not be my friend. I once had a caregiver help me, when I got out of the hospital last year. I had her stop coming because her uniform and face, represented my need to ask for help.
I think that I could not so those things other patients do, to stay alive. Then I remember that I hate it when people tell me that they aren’t as strong as I am, and they couldn’t hack scleroderma. When someone tells me that, in my head I hear a voice that says, “Bitch, please. A trained monkey could do what I do, with the resources I have.”
Now, I’m the person saying to the scleroderma patient, “I couldn’t do what you do.”
We never know how really strong we are, when we are face to face with a challenge. I will still continue to believe that I’m not terminal, because I’m not. But I will stop thinking to myself that I would rather die than need and ask for, help. Okay, you and I both know that’s bulls**t; but I will stop thinking to myself that I would rather die than ask for help with my activities of daily living… for five minutes. Maybe I will think about it for five minutes once a day, but don’t rush me. I’ve got other things to do, not related to scleroderma.