Monday, August 30, 2010

The Gimp Parade

Kahlo was born with spina bifida and polio at age 6 damaged her right leg. As a teen, she was involved in a major motor vehicle accident.

Neurological Deficits in the Life and Works of Frida Kahlo
"After initially seeming to make a full recovery, Kahlo began to suffer from frequent pain in her spine and right foot. She also felt permanently tired. An x-ray examination performed 1 year after the accident revealed a number of displaced vertebrae."
The medical evidence "strongly suggests post-traumatic causalgia (complex regional pain syndrome type II) or another closely related syndrome, reflex sympathetic dystrophy (RSD; complex regional pain syndrome type I)."
* * *
I, too, have 3 fractured vertebrae which were not discovered for years; it was easier for doctors to relate my complaints of pain to being divorced than to do x-rays to find the real cause. When a chiropractor finally did x-rays and put my spine back where it should be, the pain and fatigue started to ease up a bit. That was about 5 years after I first complained about unrelenting pain and was summarily dismissed as "just depressed".
I can't draw for beans, but I can write. There were times at the worst of this relapse that I laid in bed with the lights off, my eyes closed, and the laptop balanced on my upraised knees, touch-typing. (Thank you, Ms. Booker!) When I could bear the glare of the screen for a few minutes, I'd edit/proofread what I'd written "typing blind". Ridiculously, this ability to type lying down a few minutes per hour was used to support the statement that I could work full-time in an office setting if I just tried a little harder!
At the time, I was working with a friend on a website startup. Because I could type, but not look at the screen to websurf, she became accustomed to getting informative articles with numerous notations [INSERT LINK HERE] or [CHECK STATISTIC]. Yes, I was producing work, but hardly in a form that any employer would accept, since it was not a finished product. She had to spend a lot of time filling in those blanks, but the important part was that I felt like a productive citizen, I wasn't just lying in bed feeling sorry for myself.
The same has periodically been true of this blog. I'll have a severe headache where I can't lift my head off horizontal or open my eyes without making it worse, so I'll type lying down, in the dark, with my eyes closed, trying to describe the experience for people who may never have had a disabling headache. Or write about something else entirely, trying to take my mind off the headache. And eventually, I'll pry one eye open, take a quick proofread, and post it ... and then deal with people who assume that my ability to blog lying down in a dark, silent room means that I could have been sitting at a desk in a brilliantly-lit office with people and ringing phones all around.
That sort of thing hangs over my head 24/7/365 -- how long before I return to that level of disability? How long before my damaged leg/hip (in my case, it's the left side, and an athletic injury, not polio as Frida had) rebels and I need surgery because home-based rehab exercises are no longer enough? How long before, like one of my fellow activists, I'm in a wheelchair and on oxygen? (Unlike her, I don't have a husband to push the wheelchair; I'm on my own.) How long before the Sword of Damocles falls and "life as we know it" changes for the worse, permanently? Those are the questions I live with and no one can give me answers to.
Pop a couple Vicodin and try to hold out a little longer.

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