I am so, so lucky. My lesion is at the C1 vertebra - technically the C1 has no 'body' but forms the joint between spine and skull. One half a millimeter difference in the shape of my lesion and instead of dealing with varying levels of numbness/tingling in my arms and occasionally feet and legs, I could be wheelchair-bound, breathing only with the assistance of a ventilator.
Not to say my life hasn't altered, it has. For one, I worry now about my health. Suddenly 41 doesn't seem so young. But temper that with the fact that TM can strike anyone, at any age from infancy on, and it's a small price to pay for what I've learned.
I've learned to cry when I need to, and on any available shoulder. Just not too often. The price you pay for being the center of attention during the diagnostic phase is suddenly not being the center of attention once you have your diagnosis. It's tempting at times to wrest the spotlight back but I've found it's best to let it be. Your loved ones do not love you any less now that they're reasonably comfortable that you're "ok" (whatever that may be!), they are simply less afraid for you. Dragging the focus back only serves to scare them again. I don't hesitate to voice when I am frustrated/angry/scared - but I've learned to try (try again) to keep the drama at a minimum. As much as my general nature will let me.
My TM is a very quiet little disease/disorder. If you are as lucky as I have been... nothing looks all that different. So I try to keep that in mind when I'm having a "bad TM day" - my family or friends can't read my mind (thank goodness!) and sometimes a gentle reminder that something's amiss is enough to convince someone else to grab a knife and chop those potatoes for dinner.
I don't have a magic wand and can't change the past or predict the future, but I can say that I'm learning more about this disease every day, and about myself.
I guess that's about as many angels as you can count dancing on the head of a pin: there's no answer, only questions.
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