Thursday, September 11, 2014

Invisible Illness Awareness Week Sept 8-14

I bought a cane yesterday.

The amount of emotional waste that results from a change in the abilities of one's meat suit is difficult to quantify. My feelings about now occasionally needing a cane are mixed and layered, like a 7-layer-bean dip from Safeway. No matter which way I try to sort my feelings, identifying with and picking out the bits I like, scooping aside the ones I don't: it's still going to make me shit my brains out for several days. All in all, it's a pretty good metaphor.

I am glad I got the cane because it's making going up and down the stairs in our home a lot easier to deal with (I have a lot of empathy with my nearly-14-year-old pug regarding those stairs); and my son is going to make me a nice wood one that he assures me I will be able to beat people to death with*. And I've got a snappy little retort on how I'm pretty damn sporty for someone nearly a thousand years older** than most of the people I know.

But it's a blow. I like to dance. I like to move my body, even tho it hurts sometimes, even tho it's slow sometimes. I think the cane will help me walk more, but there's more going on with my illness than just mobility issues. I have a low-grade fever. I can't fall asleep naturally: meaning I need chemicals *and* exhaustion to lull me into unconsciousness and this never happens before 3AM. In the morning I am sore from sleeping on my nice, cushy, comfy, supportive, technologically advanced bed with the prescription pillow; and my shoulders feel like Atlas'. Don't even get me started on what gets me out of bed in the morning [see metaphor above, but without the metaphor].

During the day, I might be able to accomplish a few things, but even tho I slept until noon, I'm done by 5PM and need a nap. If I don't leave the house, as I haven't been able to since Tuesday, I might eek out a couple more hours of focused productivity, but I'll have to take a break every half-hour or so to lay down, collect my thoughts, and remember that I'm broken. All of this interferes with my job, my social life, and how comfortable I am even around my partners and closest friends. I've been keeping to myself a lot more lately because I just can't handle how badly misrepresented I am in the minds of people I care about.

It's really not asking that much when a person who is not currently able-bodied asks someone who is to have a little bit of empathy. Any one of you reading this right now could very well end up with an illness like mine. It's not like I did something to deserve this, and don't think I don't do as much as I possibly can with it. It's just my lot in life, and I manage as well as I can. That thought you just had about whether I've tried X, Y, or Z; if I should exercise more and lose some weight; if I should stop with the chemicals and lights at night; if I should stop eating all sugar; the assumption you just made about my physical abilities, and that I'm too broken to enjoy something like Burning Man because "it's so much work". Put yourself in my shoes, live the day I just lived, and then tell yourself those things in the tone of voice you use to be "realistic" or "helpful".

When people I know wander thru life pretending that my body works just as well as theirs does, I want to scream at them. From strangers it's annoying and stupid, but if you spend any amount of time with me, you know better. However, acting like I don't know how functional I am is demeaning, and a GIGANTIC peeve of mine. Both attitudes are different sides of same ableist coin and if you're working either extreme, you'd better stop right now. All I want is for people to be mindful and listen to me and accept my experience of my body. Not just because I have this horrible illness that steals my life and prevents me from doing things and spending time with people I enjoy; but because it's the right thing to do. Because I listen to you when you need it.

And when you listen to people who have chronic illnesses, you're going to learn a few things: we know what it's like to feel boxed in by circumstances. We know how frustration and anger feel. We know how grief feels. We share wonder at the smallest things, and joy at the larger things. We are clever. We have ideas. We observe and listen, not because we're furniture with mouths, but because we care.
I only ask for empathy from those I believe capable of it. And I find out by listening to you. It's only polite to do the same.

*He's such a good son.
**In Timelord years I'm one-thousand-and-none-of-your-business

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