Friday, August 18, 2006

To stray off the topic a little ...

The CDC found a genetic basis for Chronic Fatigue Syndrome! You can read about it here at Science Daily.

I read it first in Oprah’s magazine today. I had/have chronic fatigue syndrome. I try not to tell people, because I get the impression that people think I was lazy, or that I just didn’t have the wherewithal to just ‘get over it.’ It comes as a surprise to some people, but believe it or not, it is not socially acceptable to be sick in our society.

I didn’t help matters. Since there is no cure and no treatment, my last resort was to ‘will’ it away. I’d read all the miracles. There are people who have thought enough happy thoughts, breathed deeply enough times, or just been plain lucky enough for their cancer to just up and disappear. For their body to perform its own triple bypass operation on itself.

So I spent the majority of my energy trying to pretend, or at the very least, trying to appear normal. Happy. Energetic.

I would sit in my chair with a smile pasted on my face. I swear to God, I may have nodded and smiled, and said halfway-right things when people talked at me, but my entire focus was on the floor.

And how I was going to prevent myself from laying down on it.

Imagine, having a conversation with someone in public and they just get up and lay down on the floor. Wouldn’t that be nuts? I somehow managed to make it through eight years without embarrassing myself that badly.

Even worse was when I was going through the day, and I would suddenly realize that I hadn’t had a thought for hours. You know that mental mind chatter? Now my brain is constantly at work, often in my character’s lives, but also in my own. What time is it? I wonder what I’ll eat for dinner? I have celery and salad and fish and fruit, but boy, wouldn’t that frozen pizza be good with some ice cream for dessert? Why’s this car so damn slow? Doesn’t she know it’s 45 mph here?

I went through my life, constantly yelling at myself to think. And my brain would sit there stupidly, staring back at me blankly. They call it “white” something. White brain, white mind, something white. It’s because your body is sending all its blood to your body to protect and heal your vital organs, thinking takes a backseat in the priorities of survival.

Even worse, is that everything became my fault. I didn’t dare eat anything but healthy and organic. I did everything in my power to get better. Did it help? Nope. I carried my will to control and master the disease way too far.

I once got cut. A little cut on my pinky. No big deal, right? I called up a friend completely panicked. I was sure that the little cut was going to be the last straw that would tip me back in bed for weeks on end. My body was so completely out of my control that I actually had a panic attack and hyperventilated over a stupid little cut that didn’t even need stitches.

But I’m a million times better now. It always hovers though, ready to take over my life again if I don’t do yoga and eat healthy and just … I don’t know.

The CDC finding a genetic marker—it’s like vindication for me. I wish I could take the article and shove it in the face of everyone who didn’t understand, who looked at me like I was lazy, who thought I was just a failure.

Not that I blame them.

Because the person who least understood, who kept yelling at me to just get over it, and who thought I was a total failure, was me.

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