One thing about checking Site Meter, you see the referral links that brought people to your site. This means that you are reminded of posts that you had completely forgotten about. In this case, it lead me to a post of my mom’s that I hadn’t read in some time.
This particular post is called “You Can’t Even Tell Perfect Bodies Apart,” which is a reference to something I wrote while in the hospital. In it, she talks about her hopes and dreams for me and how they changed as I slowly came to accept my disability.
Reading it made me tear up again. Mostly because she’s a damned good writer and is excellent at subtle tugs on the heartstrings — which is only forgivable because she’s doing it out of honesty rather than manipulation.
But it also reminded me just how far I’ve come in my struggle to accept my disability. I read her account of how she and I both fought to understand and accept my limitations. Her struggle wasn’t out of meanness. In fact, she never showed anything but support. As a mom, she wanted me to have a full, happy life with opportunities and possibilities. It’s hard to see a life dependent on an SSA disability check as anything but obstacle-ridden.
I wasn’t much better in my own outlook. I worried about who could love someone who couldn’t “pull her own weight.” Seriously. It makes me shake my head, sad for the girl who truly thought that way. And maybe give her a hug.
Even after 8 years of having these limitations, I was so very far from understanding myself as a whole person. I looked at things as before and after. I looked at my body as alien to me, as a source of constant disappointment and failure.
Nowadays, I’m still irked when I’m low on energy. But I don’t think of it as a failing. I think of it as part of my disability. (Words I can now say, by the way, without wincing or faltering in any way.) A lot of that is therapy and the right medication levels. But a lot of that is also finding a wonderful man who puts up with my depressive spirals, my freakouts and my harsh self-criticism — all with a patience that I can never understand.
He chides me to be nice to myself, reminds me that he’ll love me however I come (both in physical ability and in weight, which also sometimes gets me down) and generally is there to tell me to knock it off when I get too down on myself. He sits around telling me he loves me until it really begins to soak in that you don’t have to be perfect to be worthy of love. And that I’m actually kind of awesome. Luckily, he’s pretty awesome, too, so we make a good pair.
I still don’t like the limits I have, don’t get me wrong. I’m not peacefully accepting things. I’ve never been great at that. But I don’t think of it as restrictions that my body is placing on me or limits that have been imposed on me by the universe. Instead, I think of it as limitations that come with my disability, since I am disabled.
In accepting that, a lot of pressure has dropped off. I don’t feel the need to constantly fight my limitations. Instead, I try to find ways to work within those restrictions and make the most of what energy and capability I do have on a given day. I don’t feel like some huge injustice has been visited on me — at least, not unless I’m low on one of my meds — but instead that this fatigue is a fact of my life now.
That doesn’t mean that I’ve managed to see the beauty in every aspect of my life or that I’ve accepted this is part of some larger plan for me. No, the limitations still suck. But I think of them less as an external force and more as what they are — a physical fact. One that isn’t going anywhere, no matter how hard I rebel against it. Which, by the way, is an excellent way to use up what little energy I do have.
I think it comes down to Cartesian dualism. Descartes was really revolutionary in getting us to think of the mind and the body as separate identities. It’s something many of us now take for granted. We joke about someone loving us for our bodies. But isn’t that part of who we are? Maybe not the most salient part, but part of us nonetheless.
We divide the mind and body as though they were something that could be separated. As though the body were really just molding clay that happens to house the brain.
We constantly talk about bodies as somehow external to us, as though our brains weren’t simply part of that body. We “get” wrinkles. We “lose” our hair. (I’m pretty sure we know where it’s going, guys.) Our backs or knees “give out.” All this wording to convey a single idea: It’s us versus our bodies.
Hey, I would love to lose 40 lbs. I’d be much healthier if I did. And I still fight not to see an idealized me within my current body — as though my true self is thin and this current size is just a bad costume I can’t get off.
There is no idealized me who is thin and has a perfectly normal amount of energy. True, if I lose weight, I’ll gain some energy. But I will always be a disabled person. I will never have the same amount of energy as the average person does.
The body that is doing the typing right now — that’s me. I am my body as much as my body is me. Which sounds both obvious and hippy-dippy. But most of us have divorced ourselves from, well, ourselves. Until we reunite body and mind, we will never be able to accept ourselves — positive or negative.
And trust me when I say that fighting against yourself is exactly as exhausting as it sounds.