January 16, 2010

"First things first, but not necessarily in that order." Dr. Who

It's funny how the brain works.
Got my MRI results last week. Apparently all is stable, the two black holes I have are small (the concept of any still fills me with an unnatural fear that all of my brain is going to be sucked into them - I mean, couldn't they come up with another term for these areas of permanently dead tissue?), and there is no sign of active disease in the form of glowing lesions. This is all good news. My increasing leg symptoms are due to the old lesion on my spinal column and some spinal compression located right around it (how convenient - sheesh!) and there is not much they can do about this.
Anyway, filled with so much relief that I am actually not shifted into progressive MS, I immediately started exercising like a madwoman and followed that up with a rash of job applications. Of course I still can't see when I am tired, and I tend to burst into tears when challenged, but heck, bring it on!
I feel as if my life could have meaning again.
In the cold clear light of day, it occurs to me it probably wasn't wise to apply for the full-time management position. But heck - the lure of money was intoxicating, especially after arguing with my ex over whether he had any responsibility to look after the kids now that they were over 18. We differ on this and it is at these times that I vow I will have money again, if only to help the kids out. And the job was the kind that would use all of my experiences and the wisdom I gained through working through this diagnosis. I'm much more patient now, less snarky, less prone to judge. Few things seem as momentously important as they did before, and my experience at the hands of the health care system leads me to believe there is too much that needs fixing, right down the line, for me to fix it. I've learned that your heart may be willing, but other factors may make things impossible. I've learned that bureaucracy is an output of the banality of evil, that people use it to dilute responsibility, but also to ensure that things are done according to plan, reducing the risk of abuse. (While also freezing the system dead.) I can deal with it now, having wrestled with it in the past. I am filled with the patience needed to cope with line-ups, bad meals, octopus-like paper trails, snarling service people. I've learned the value of a smile at difficult moments, a pocket with enough to share, a touch, even if you can't feel it.
Of course, I'm dreamin'.
I couldn't work full time. I am only so mellow because I can rest when I need to, organize my day according to my state of mind and body. It's hard to be reasonable when pain is shooting up your face, and your leg is dancing solos, you can't see for the fuzziness creeping in from the outside, you feel incontinence coming over you like a wave, and you can't think of words to say to save your life.
But for a mad, wild, free moment after hearing about my MRI, I pretended it would all go away. I like these journeys into a fantasy world with no MS. It's like when I heard about CCSVI, and thought briefly, fleetingly, about being healthy again, and what that would mean. At both times, I became almost irrational in my hope. Now, as my legs jump about more and more, and as it becomes apparent that CCSVI may not "liberate" MS Sufferers as well as they hoped, rationality eases over my brain.
It's funny, but I can still write, like today, when my mouth is not working. Perhaps that's a sign.

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