A few things:
First, thank you. The outpouring of response and support as I face this is really beautiful. A little overwhelming, actually. And lots of “whatever you need let me know” offers. Being pathologically independent (like a lot of handicapped folks) it’s a little hard for me to think of what to do with that.
Materially, I think I have it covered. I’ll be staying out at my parent’s place for a few days after both surgeries. Otherwise, all blessings are accepted: prayer, meditation, good thoughts and wishes. Someone wanted to send me healing reiki energy… sounds great.
If the surgery is successful, I may gain weight. I am forty years old, five foot eight, 135 pounds, and I can eat almost anything I want, and not gain weight. I weight about the same as I did in college. That is (at least in part) due to my condition. Excess muscle tension–that’s what dystonia is–elevates my metabolism. I’ve talked to a few folks who have gained as much as thirty pounds.
Now, I do limit my indulgence: there’s more to a healthy diet than controlling my weight. But this may entail some adjustments. I’ve never had a weight problem before. I hope I can address it more through exercise.
Also, one of the side effects of the surgery is something they call the honeymoon period–brain swelling gives some short term relief from dystonia symptoms. It’s a good sign–means they got close to the right area–but it passes. The lasting results come after the process of adjustment.
I am participating in research. This surgery is not fully approved by the FDA–they call it a ‘humanitarian exemption.’ Meaning insurance does pay for it, but you have to be part of a trial. There are two groups: the experimental group and the control group. Both get the full surgery. For the first three months, they pretend to turn on the control group’s stimulators. After the trial period, they video you, and compare with video they take before the surgery, try to isolate the placebo effect, record the results… oh, and they turn everyone’s stimulators on.
So it’s fifty-fifty: I might get the benefits of surgery right away, or I might have to wait three months. I’m OK with it… it’s for science, after all.
Infection is a whole different animal when you have foreign objects in your body, especially your brain. Especially wires going into your brain through holes in your skull–it’s like a little germ highway. So for example, if I want a tattoo, it’s now or never.
Well, it’s now. The good folks at Chicago Tattoo hooked me up, recommended by a woman named Lauren who had cool–and well done–tattoos. Went with Matt Ziolko. As of this writing, it’s not done, but I’ll post pics when it’s ready. The experience is a whole post unto itself.