10:47pm April 25, 2013

"I won’t let my body win."

Forget where but someone said that about their chronic illness.

I can’t… I just can’t do that. Can’t think that way. I don’t know if I ever did. But I can’t anymore certainly.

I wish I knew how to explain. I keep coming up with a blank when I try to think of good words for this.

I can’t see myself as at war with my body.

My body is important.

My brain is not separate from my body. It’s a part of my body. It’s an organ like any other organ. My brain is not my identity.

My body is an amazing collection of cells each with their own kind of intelligence each working together with the others to make things work. Trying to cooperate. I am a collection of microbes that have figured out how to live together symbiotically. Microbes have awareness and intelligence of their own whether they are involved in my brain or not. A brain creates a specific kind of intelligence but it’s not the only kind. Every living thing has awareness of its surroundings, ways of making its way through the world. Not just living things with brains. Animals, including humans, are not just living things, but collections of tiny living things all living together. And this is amazing and wonderful and cool.

I feel a duty to the tiny living things that make up who I am, that don’t, alone, have a voice in most of what human beings have to say about ourselves, even though without them we wouldn’t exist.

I feel a duty to all the symbiotic organisms that live within me, making it possible to do things like digest food.

These things don’t lessen just because my body doesn’t always work the way I want it to work. To be at war with my body is to invite an early death. I might die early anyway. But I mean an earlier death.

I am amazed by my immune system. By the way all those little tiny cells know exactly what to do to fight things off. Even if, like much of my family, they occasionally attack the wrong parts of me, that doesn’t mean they’re useless or bad. I’m amazed that they get things right so much of the time.

Yes, lots of parts of my body don’t work well. They hurt. They go numb. They fire off when they shouldn’t and fail to fire off when they should. They deteriorate when they need to be working. They make me feel like throwing up most of the time. They don’t let me walk much or do a lot of things most people can do.

But for the most part I don’t hate my body for it.

My body will lose eventually. The day my body loses is the day I die. The day I die is the way my body, and possibly my soul, get absorbed into the rest of the world, to become part of everything else, fuel for other living things. And that is amazing and wonderful in its own way.

But I think it’s better to be alive. And letting my body win, temporarily, means staying alive. Human beings aren’t Vulcans, we don’t live in little receptacles where our minds remain forever. We live in bodies. And in general it’s best for us to live as long as we can. Best for ourselves, and best for others, because we are a social species that rely on each other for survival. Life is temporary enough that every moment is precious.

As a physically disabled and chronically ill person, I hear all the time, as Harriet McBryde Johnson has pointed out, people pressuring me to divorce myself from my body. People saying my life should be all mental not physical. Even people acting like mental isnt physical, like the brain isn’t part of the body.

Way too much experience with severe delirium has taught me that my mind is very dependent on my body. That if my body gets sick enough, my mind stops functioning too. The two are absolutely interconnected. The brain is one more body part and it can do bizarre things when other parts of the body start malfunctioning. I will never forget that terrible feeling where my mind feels as if it’s being ripped apart at the seams. Not even at the seams. The seams would be too tidy. Ripped apart in random places in terrible and painful ways. Thrown into fragmented hallucinatory worlds that make no sense yet consume everything in their path. Wondering every time I regain a little bit of lucidity, if I will die sometime in the more heavily delirious state when I’m too unaware to even comprehend death coming. If each lucid moment will be my last. I wouldn’t wish it on anyone.

That’s what happens when your body starts losing. For real.

I want my body to win for as long as it can. Eventually it will lose but for so many reasons I want to put that off. Because I love life. Because I feel it’s my duty to stay alive as long as I can. Because life is temporary and death is permanent and I want to get everything out of life that I can, before experiencing death. Because I feel like I owe it to all the microbes that make up who I am, that don’t always get a say in how things work because they aren’t in ultimate control over my body except in smaller ways. So many reasons to keep living. I don’t mind putting my life at risk to help others, but that’s different.

So I will le my body win. For as long as I possibly can. I can’t use “my body” as a shorthand for everything difficult about my physical existence, because it is and always will be so much more than that.

It’s weird how I set out to write these things thinking I can never put them into words. And then, even if I can’t put everything into words, suddenly words happen. Of course every time words don’t happen, you guys don’t see it. You only see when they do happen. That can create a lot of illusions. But nonetheless I often end up being able to write things even though before I put my hands to the keyboard, I was certain nothing of value would come out. And even though I’ve had to fight my way through typing gibberish or automatically back spacing every time my brain decides to check out on me. I still did it. And that’s sometning, whether it feels like it or not.

Anyway there’s a lot of things I have to fight against, even in order to just type this — as I said my brain likes to check out and make me type gibberish or hit backspace over and over. And I have to struggle against that in order to write sometning need. I am struggling against it as I type this.

But that is my body malfunctioning. And a malfunction isn’t the same thing as my body. My body is much more than that. My body is a beautiful and amazing place where microbes have figured out how to live together and work together to create something much more than the sum of its parts. And therefore my body is something I respect. I want my body to win because human bodies are amazing, whether they also happen to do things we hate. So I will let my body win, for as long as it can. As much as I joke about wanting a new body at times, this one is all I’ve got and it’s pretty cool regardless.