A New Lens for an Old Life

When you’re sick, you spend a lot of time thinking about being sick.

Do I have the flu?

This sucks.

I need to drink more water.

Which medicine is actually the best for this?

I’m not really feeling up for that thing I planned. 

I want to sleep.

Maybe a heating pad will make that body part feel better.

This sucks.

I hope I feel better tomorrow.

Unfortunately, when you’re chronically ill, this is every day.

Being sick isn’t something you forget. You can get really good at it, recognizing the body’s warning signs like a trail guide reads the weather, but you don’t get over it. Even if you do feel better tomorrow, you will feel worse again soon. That’s your life now.

This is why a lot of my personal blogs will deal with chronic illness. If you’re not here for that, that’s okay. There are lots of other fun blogs you can go read instead. I just wanted you to understand.


 

Lately, I’ve been thinking about my past.

The sun has been coming out, and I’ve put on a lacy tank top and hobbled out to the balcony to squint at it, trying to remember what my life was like before getting sick. My life has not yet been long. Hell, it may never be. But in the time I’ve had, I remember doing more than this.

I went to punk shows and learned to spin fire. I worked for the Vermont Conversation Corps, digging ditches and building rock walls. I went to comic conventions in Portland, Oregon and sang to coyotes in Tucson, Arizona. I had a life once. Now I walk with a cane and desperately try to gain back the weight I’ve lost. I’m an amalgamation of bones that writes books. I am, as of this week, 29 years old.

I’ve been diagnosed with fibromyalgia, plus a heart defect and some other assorted junk. Some people can divide their lives into before and after diagnosis. I am not one of them. This is why I’ve been thinking about my past.

I don’t know when I started to get sick.

I was diagnosed less than six months ago, but it was almost two years ago that I became too sick to work and had to quit my day job. Before that, three more years of abdominal pain and weight loss. Before that, migraines since puberty. I have always been the first one to need to sit down for a while. I have always overslept. I have always had to physically work very hard to do things that other people handled easily. Somehow, I just assumed that these difficulties were normal and everyone else was hiding them better.

Now, I don’t know how many of these things were just life, and how many were illness.

On one hand, I feel like I should go back through most of my adult life, apologizing to people. I’m sorry I was so fuzzy-headed that day. I’m sorry I slept through that thing that was important. I’m sorry I couldn’t work harder. I’m sorry, I’m sorry, I’m sorry. I didn’t know. I didn’t do it on purpose. I wasn’t myself. Maybe I never have been.

Wasn’t I, though? If having a defective body has affected so much of my life, isn’t it just part of who I am? I suck at math, too, and I’ve accepted that as part of myself. A wonky heart valve isn’t so different from the shape of my ears or the weird bend in my little toes. Who knows where sickness ends and I begin? Or any of us?

I had a solid crying session over this whole mess before coming out the other side laugh-crying and giving my lucky stars an ironic salute. If I’d never gotten severely ill, I wouldn’t have written all these books (which sounds like a pretty ridiculous thing to say, but it’s true, because I never would have quit my day job of my own volition.)

Sometimes I hate it. Sometimes I feel disjointed. But it’s all me. It’s really no more or less than anyone else gets.

And to the extent of my ability, I’m gonna run with it.

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