You know, sometimes you forget that you have a permanent impairment, especially if your disability is what is called an invisible disability. Sometimes I even forget there's a problem myself.
This has been going on for years, now. At first, I coped with the help of a very good friend, who had a physical problem: I helped him out with his body-stuff, he helped me out with my head-stuff and for a couple of years there you'd swear we were two functional people because no one ever saw how much help I gave him and he gave me. Both of us were proud - it worked for both of us to keep it that way.
Then, on his death, it became very much more difficult. I had forgotten how much I relied on him: to remind me to leave the house, to remind me what I was doing two minutes ago, to remind me that Thursdays are garbage-night and sometimes rent-day, to remind me who I said I was going to visit.
My affairs seemed to be plunged into immediate chaos. I screamed for services, and in a while did, in fact, find a service provider that I was eligible to use. I resolved to request the minimum possible help that I could get away with, being as I was still proud, and that being as independent as possible is a big part of my self-esteem. I may be dependent on others, but I can choose to be more dependent or less dependent - and every atom in me screams to be less dependent!
Gradually, over time and lots of home visits and lots of paperwork and lots of trips out, my affairs were more-or-less sorted. I developed a rigid set of routines, because I function much better with regular hours and activities than doing things at random. I've locked myself into a pattern that distributes itself identically over every fortnight.
To some people, that might sound scary: where is the room to move? And a few years ago I would have been in that camp. But now it is comforting: I can be reasonably sure the garbage will get put out and the rent will get paid, to look back to the examples I cited earlier. I am not bored: I am bordering on secure. To me, that is valuable, even if I have become exactly the kind of person I was most contemptuous of when I was younger and more able.
The down-side is that I find it terribly hard to schedule in the one-offs that are needed: my home visitor told me on her last visit that I've been complaining about a particular ailment for her last two or three visits, making it four or six weeks, and apparently back then I was talking about seeing my doctor. Have I even made an appointment? I just haven't gotten around to it yet. It would be easier if I just squeezed a regular doctor's visit into the fortnight every fortnight at the same time on the same day, but I can't imagine anything worse than going along to the doctors just-because, only to tell her that my state appears unchanged and I don't really want her to do anything, on most visits. There's a limit to the amount of my doctor's time I'm prepared to squander for no reason.
Way back a few years ago when the stroke-or-whatever-it-was happened, I was assessed by a ... neuropsychologist? neuropsychiatrist? We played games with blocks and bits of paper, and my mathematical ability and linguistic ability were tested. I remember very little about it, but I do remember that the block test was so frustrating that I ended up in tears, gathered the blocks up in my hands, and threw them against the wall. Sadly, the wall I chose to throw them against was directly behind the practitioner's head. Don't worry - he ducked. He also realised the need for me to escape outside at that point for a breather, to calm down.
I don't remember much of the report he sent to my GP either, even though she let me read it, and I remember that a few things outraged me. The only think in the report that I remember now - and this didn't outrage me at all because I knew it to be true - was that I displayed irrational anger and distress and a lack of impulse-control. When I read that, I remembered the block-throwing incident, and suddenly realised that it must have looked like an act of personal aggression against him.
That was ages ago, and what my settled and repetitive routine hasn't enabled me to manage better is my impulse-control. And it's still getting me into trouble.
For instance, some time ago (weeks or months, it still feels lividly recent because of the emotions surrounding it), the young child of a friend told me something personal. It didn't even occur to me that it might be in confidence - they seemed very comfortable telling me, and they knew I was very close to their mother. In fact, I assumed that the mother already knew. The very next day, it came up in conversation with the mother. I blurted it out, any kind of impulse-control completely beyond my abilities at the time. The mother was surprised - she hadn't known at all. And now the child won't talk to me because the one adult they thought they could trust, betrayed them to their mother. I love the child and I love the mother, but I've lost the friendship of the child completely, and I feel uncomfortable around the mother because of it.
And very often at times when I should keep my dignity and just smile, I insist on chattering away, talking about whatever happens to be on my mind at the time. My lack of impulse-control strips me of dignity, and has people seeing me as a clown, and probably, as that child now does, as untrustworthy.
But in the adult world, I think it actually makes me much more trustworthy! How can you be more trustworthy than someone who calls it exactly the way they see it, one hundred percent of the time? If something's on my mind, the people concerned know about it. Does that make me untrustworthy - or does it just make me super-honest? Because around me, The Truth Is Out There, and has been consistently out-there for several years. When you don't do impulse-control, there's just no hiding a truth under a layer of politeness or silence.
Sounds great? Yes. But practically, in our society which is built around the silences and lies that we refer to as "diplomacy" and "politeness", it is the most visible part of the disabling handicap I will have to deal with for the rest of my life.
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