Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong
shadesong

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The things I cannot do

I got more disability paperwork today. The work history will be a bitch - I do not remember my hourly wage from 1990! The description of my seizures will be easy.

What kicked me in the gut was the "function report".

I don't often think about what I can't do. There is, of course, stuff that's part of my life every day - the fact that I can't really drive, the fact that I need to allow myself two to four hours after taking my meds in case of Bad Meds Days, the fact that I just can't plan multiple activities for any given day. And that's okay. That stuff... allowing for med metabolization and napping and the like, that takes up a third to half of my day.

But then I get to decide what to do with the other half.

I have had some bad things happen in my life. The one people think of most is the rape. Time and again I hear how strong I am that I'm still psychologically functional, that I'm sex-positive, that the rape did not destroy my life - and I'm always perplexed. I've said this before, and I'll say it again:

When something like that happens, you can either curl up and die inside, or you can get up and keep walking. And to me, giving up is not an option. Get up. Keep walking.

And I've come to realize that how I handle things with my body is much the same. I have half a day. Now, I can either curl up and wither, all pissy and/or depressed that my body doesn't work, or I can get off my ass. I can write. I can do fun house stuff. Lacking bigger pleasures, I can either cry about the lack of bigger pleasures or recognize the small ones - morning fog. Lots of cheese samples at Whole Foods. Surprise wine tastings.

Get up. Keep walking. (Just rest when your body craps out.)

So I spend my time focusing on what I can do, with the obvious exceptions of the glaring and unavoidable things. So I don't tend to focus on the stuff this Function Report brings up.

What were you able to do before your illnesses, injuries, or conditions that you can't do now?

It all opens up before me.

Do you need help or reminders taking your medicine? Yes.

Do you prepare your own meals? No. Not unless they're cereal or sanwiches.

If "no", explain why you cannot or do not prepare meals. During a complex partial seizure, the patient is not conscious/in an altered state of consciousness, and the brain cannot process information from the pain receptors. Lacking proper input from the brain, the patient could, say, rest her hand on a hot stove burner for the three to five minutes that the seizure lasts, causing third-degree burns. The patient is cautioned not to cook. Or iron.

Money.
The money section kills me. I've always been the finance person here; my previous husbands both bounced checks like crazy. Adam had trouble with money management. I cried when I handed the checkbook over to him. Not because I feared he'd fuck up - he hasn't - but because it was a Me Thing, yet anothe Me Thing I had to give up.

Are you able to: pay bills? Count change? Handle a savings account? Use a checkbook?
No. No, I'm not. I used to be Wile E. Coyote, super-genius - but now I can't count change. And now I look at the check register and the numbers swim around and I can't make them mean anything.

Do you need to be reminded to go places? Do you need someone to go with you? Yes. Yes.

For how long can you pay attention? Five to ten minutes.

How well do you follow written/spoken instructions? I cannot follow a recipe (their example) anymore. I look at it, and things just swim around. I can't do the paper-folding trick Elayna tried to teach me. She tried.... told me, showed me, several times, but if you give me a list of five items, #1 will have slid from my brain by the time you get to #3.

My brain cannot hold things anymore. And I feel myself losing them.

I don't think about this stuff on a day-to-day basis. If I did, I'd break! I work around it, or most of it; I try to. Adam helps. He sets out my meds; he reminds me when Elayna's getting out of school at a nonstandard time. I've set up my own framework - notes to myself all over, lists, bulletin board. My dozens of crutches, just to make me feel/seem functional.

And I've pretty much adjusted to seeing that as my new normal.

But reading this thing reminded me, very sharply, that that is not normal. Reminded me of how much I cannot do.

Nothing more I can say about that right now.
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