2:59am July 5, 2013

Why my body is the center of a giant ear?

Some days, I can just feel my body not functioning right. I’m exhausted, my stomach feels all wrong, and everything hurts.

Of course my body is trying very hard to function, or I wouldn’t be here at all. That’s where I differ from people who, trying to be inclusive towards disabled people, make sweeping statements like “Some people have bodies that just can’t be loved, because their body is trying to hurt or kill them.” Because for every person who hates their body for “trying to hurt them”, there’s a person with an identical body who loves their body because they know it’s doing its best with what it’s got. That rather than their body trying to kill them, their body is trying very very hard to stay alive despite malfunctions that could harm or kill them.

I don’t place any judgment on individual people for hating their bodies, but I hate listening to people say that anyone with their body would have to hate it because it’s just not true. There’s no such thing as a body everyone would hate, because lots of things go into whether we like our bodies, beyond our bodies themselves. There’s cultural factors, emotional factors, spiritual factors, cognitive factors, philosophical factors. Your body itself is only one of many factors in how you feel about it, and it’s kind of insulting to reduce everyone’s feelings about something to what kind of body they have. It feels as icky to me as generalizations about which autistic people do and don’t want a cure based on what autistic traits we have. As if a complicated opinion can be reduced to a few traits of how your body works.

That’s not my main point though. I just want to explain that part so nobody will make unfounded assumptions about how my body functions.

So I have a really intense attachment to my body and always will, regardless of what problems it has or develops. Even on days like this, there’s a feeling of depth associated with just sinking into my body as far as I can. Connecting to it as much as I can. Regardless of pain or exhaustion or nausea.

And I feel so weird I don’t even have words for it. I try but none of the words work. I feel so connected to the world and everything around me, my body just being one part of it. Everything seems important. So important I could cry.

And that sense of precariousness to my health and even my existence, seems to only heighten the importance of everything going on around me.

But what is going on around me? Most people would look and see nothing. They see me lying in a bed doing nothing with nothing happening around me. But that’s not true.

My heart is pumping blood, and my lungs are moving air (helped by the bipap), and my digestive system is doing its best to move along, and my stomach is draining into this bag, and food is coming into my jejunum through a different tube, and neurons are firing everywhere. And that’s just what’s happening in my body.

The world around me is just as alive as the world inside me. Both at a small level and a large one, everything is moving all the time. And things are connected to each other, there’s no clear boundary between in and outside. And even though the window is closed I can see and feel all kinds of things happening outside it, because things are connected that way and my brain sees patterns on a sensory level better than it does things most brains seem good at.

So I’m constantly connected to my body. Not just connected to it. I am it, there’s no person separate from it, at war with it, or anything like that. And through my body I am connected to the world around me. I can perceive things I have no name for, patterns I am connected to and flow in and out of constantly. Even though I look like I’m just curled up in bed.

The world doesn’t go away just because you never leave your house. It’s still there and you are still part of it. And everything in it remains connected to everything else.

And that connection is everything. Once you can find it, even a little, then a lot of other things don’t matter as much. I really do feel like the entire world is visible from one place, and I can’t explain it or describe it or tell you what I mean. It’s just there. I can feel so many things about the world just by curling up in bed and listening with my entire body.

Maybe that’s why I can’t dislike my body, too. Because it’s how I connect to things. It doesn’t matter if it’s malfunctioning or falling apart, it doesn’t even matter if I’m in the middle of a medical emergency I might not recover from, my body is still the way I connect to the world around me. In fact, sometimes on my worst days, on the days when I’m in the hospital struggling to live, that connection is only heightened. Like my body is trying to get as much as it can out of the world around me.

It’s like the way Momo listens, only for me it’s more tactile or kinesthetic than auditory. Like movements and gravity-like sensations mixed with colors. But here’s the way it was described in Momo:

~~~~~~~

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed to hear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think listening isn’t an art should see if they can do half as well.

~~~~~~~

That’s exactly what it’s like.

And often I feel like my ability to listen to the world in this way is enhanced by everything my body has gone through. It’s not some kind of saccharine platitude meant to make me feel better about being sick, it’s just the truth. As my body has been through more trouble, it’s also experienced a strange deepening process I’d be hard pressed to describe. And part of it is my ability to connect with everything around me.

And when I connect more deeply with my body, everything inside me screams at me that this is the way I’ve been built. That the things that go wrong are ways that very deep aspects of my physical being manifest. They may not always be pretty, but I’d be someone else without them.

That doesn’t mean I don’t want treatment or anything. It just means…I’ll have to quote Harriet McBryde Johnson:

“But to me, my disability is – I mean, it is part of my DNA. It’s in every – every – would you say "molecule” of me? I don’t know enough about the biology. But I mean, you know, at the tiniest level, the disability is part of who I am and, you know I really have no interest in changing that. It seems to me much more interesting to figure out what to do with this kind of body and this kind of life.“

And… I feel the same way about things being in every molecule of me. It doesn’t, in my case, always mean I don’t want a cure. Some things I very much want a cure. But no matter what it is, whether I want a cure our just treatment or no treatment at all… I’m still very much aware of how these things are an outward manifestation of something embedded very deeply in who I am as a physical human being. I can never forget that. And I can never wish that I had never existed, that I’d been someone different with different kinds of molecules or whatever you’re going to call it. Even when it’s things that may well make my lifespan a good deal shorter than average – Harriet always knew she’d probably die young too, and she died in her forties (much later than she expected), but she still felt her disability was so much part of her she’d change nothing.

And that’s kind of how I feel. I might want treatment for things that already exist, but I’d rather have existed with all these problems, than to either not have existed, or been someone else entirely with all these things tidied up and made into someone else. Because you can’t alter things such a deep part of a person without making changes that you didn’t necessarily expect. So I’ll take Mestinon, but I’m very glad my mother didn’t have the option to detect and alter my neuromuscular condition before I was born. I don’t know who I’d be without it. And I don’t think anyone can truly know every effect that genetic illness has on their life, because one gene can do so many things. And even non-genetic illness can have all kinds of effects, both good and bad, that aren’t immediately obvious.

And in my case I feel like something about illness has affected my ability to listen and connect to my body and the world around me. On nights like tonight, when I curl up and feel my body working (and not working, as the case may be), it’s obvious there’s a connection between that and feeling what’s going on out in the world where I can’t directly see what’s happening. I can’t name what that connection is, but it’s plainly there. And it’s important. And it’s overlooked by most people.

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