Friday, April 20, 2012

WEGO Health Activist Writer's Challenge Month - Day 20

 I'm participating in the WEGO Health Activist Writer's Month Challenge. Today’s topic: Miracle Cure. If a miracle cure came what would it look like?

When I looked at the list of topics for this blog challenge this one made my heart hurt. An invisible hand reached inside, ripped something loose and held it up in front of me Aztec style. I want a cure. Not an imaginary one. I want a real one. I am too tired inside to wonder what it would be like to have a cure. I am exhausted in places I didn't even know could hurt or be weary.

I got sick April 15 1997. I woke up and couldn't see. Every tiny muscle in my eyes went haywire. I couldn't focus. I had double vision and I couldn't control the way my eyes moved. I went to bed April 14, 1997 living a fairly ordinary life and I woke up the next day in a nightmare. I want this nightmare to end. I do not want to pretend it is over. Pretending just makes me sad.
Myasthenia gravis. Then thymoma cancer. Then my thyroid. Then diabetes. What next? I don't want a cure as much as I just want the elevator to stop free falling. I would like to stop a moment. Just for a second. But, of course... what I want doesn't matter.

Last night MG went bananas. In the middle of eating dinner I couldn't chew anymore. I couldn't swallow. I couldn't speak without slurring my speech. Did you know  I am talented enough to be able to slur my speech two different ways? Sometimes I slur my speech because my lips and cheeks fail to move correctly. My tongue extends too far and I sound a lot like Sylvester the Cat or Daffy Duck. The other way I slur my speech, and what happened last night, was due to tongue fatigue. Tongue fatigue prevents me from extending my tongue to my teeth. It pulls it backward so it only reaches the middle of my hard palate. If you pull your tongue all the way back as far is it will go and try to talk, you'll sound like I did last night. Only of course I couldn't make it stop.

This all happened during dinner. My tongue forced food out of my mouth instead of bringing it back to swallow. Since I gave my insulin dose in a shot, I once again had too much insulin and no way to eat. I couldn't chew and couldn't coordinate a swallow. Juice was out of the question. So, I went for emergency cake frosting just to make sure I didn't go low. 

Not that I had to worry. 

My blood sugar shot straight upward, way higher than it should have considering the carbs I ate. I've eaten cake frosting many times and didn't have that reaction before. Yesterday my body threw a tantrum. I figured out I'm on the edge of getting a cold, which will make MG and diabetes go crazy. Understanding why things fall apart helps me deal. 

Another thing that helps me deal is NOT thinking about a cure. I spend my energy getting through the day and doing what I need to do. If I think about a cure I get depressed and my heart weighs me down. I'd like to switch it off. I can't. Thinking about doing something I can't do distracts me from doing the things I can do.

I can deal with MG and diabetes with help from my friends and family. I can be nice to myself when I'm sick. I can rest and recover my strength. I can do these things. I can also blog. I can work on my next book. it's another essay collection like the essays in Life Music. I can tinker with a novel that is just on the edge of being born. I can play music and video games. I can care for my pets. I can do so many things with my life that give me joy and pleasure and meaning. This is where I lead my thoughts because they fill me with hope. Real and tangible hope that I can hang onto right now matters to me.

If a cure comes I'll enjoy it. If not... If not I choose to enjoy my life anyway. Even with MG slurring my speech and making it hard to speak. Even with diabetes giving me high blood sugars in the middle of the night. My life. My dance. This is what I choose to do.

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