as small as a world and as large as alone, It’s extremely hot and I have thick, bushy hair...

12:46am July 31, 2015

It’s extremely hot and I have thick, bushy hair especially in the humidity. Even with the hair oil (and the daily spray I made out of it) it’s still a lot of hair and it gets hot. So I did this:

Two side braids, ending in rubber bands.
Then I pulled them back until they met in the middle
Tied them together with a rubber band.
Unbraided all hair below that point, removed two rubber bands.
Began to divide up the hair into three pieces, below the rubber band.
Took off the rubber band.
Braided the remaining hair as tightly as I could manage.
Rubber band added at the end of the braid, now the only rubber band in any of this at all.

And now I have two braids going around the sides of my head and meeting as one braid down the back.

I used to do all kinds of strange things with braids, this is nothing. I used to make small braids and then bobby pin them into spiral shapes then hang earrings off them. That was during a time in my life when I considered my body to be a good place to hang as many stimtoys as possible, in the form of jewelry mostly.

It’s also the age when I started learning that when you alter your appearance, everyone else thinks you’re doing it to have some effect on them. Which seemed laughable but people would literally walk up to me and say “You must want attention really bad to wear earrings in your hair.” No, I just liked the way they looked. I had no idea the attention they would provoke and actually found that really annoying.

With this hairstyle, I likewise do it because I like how it looks. Not for other people to look at. The selfies are obviously for people to look at, but more as a means of self-expression than a statement that I’m “trying to be different on purpose” or something.

I have talked to other auties who did the jewelry-as-stimtoys thing and to a one we all had people assume we did it for its effect on other people, rather than because we personally happened to like it. It always struck me as weirdly self-centered that so many people assume that every random person is vying for their attention so badly that they’d risk ridicule to get it. (This goes double when the people assuming that are institution staff whose attention everyone is trying to avoid. They seem to assume a lot that everyone wants them to pay attention to us, which is bizarre given the power dynamics involved.)

Oh and the heat right now? When I’m not in front of a fan, my entire body gets sweat pouring down it, everything but my armpits themselves (strong antiperspirant, I know it’s considered bad for you, I still do it because otherwise my BO is intolerable, and it’s not like it stops sweating anywhere else besides my armpits). I think I got heat exhaustion tonight (because I got a thing so I can now watch Netflix and Amazon Instant Video on my TV instead of my computer, and I stayed out there too long as a result), and I definitely started showing signs that caused a staff person to administer dexamethasone in a hurry. Which helped. She says whenever she sees me drooping, shaking, and panting, she knows I’m probably having cortisol problems in addition to whatever just happened. And so far I always feel better after she gives steroids, so I feel lucky she’s around so often. She notices before I do when I’m starting to have trouble.

Last time she did this was the time I bruised my ribs really badly. Minor injuries like that can still trigger adrenal crisis, in fact one of the common ways adrenal insufficiency is diagnosed is when someone has a relatively minor injury, but collapses, and ends up either diagnosed in the ICU or the morgue. I was told I should have been in the ICU sometimes, that I’m lucky to have survived those times, and that had anyone been paying closer attention I would’ve been diagnosed a lot earlier. By the time I was diagnosed, I was collapsing every night in my sleep and waking up too limp to move and unable to stay conscious very well, and very glad that my bipap’s central apnea mode (AutoSV, see link for details) kicked in whenever this happened and acted as basically a makeshift ventilator.

Anyway, hair. I like this hair. I like that the hair that isn’t in the braids is mostly the really obviously curly hair, that is normally hidden by the rest of my hair.

As for the heat, one of the other things I want to do is crochet myself a vest with lots of big pockets the size of ice packs, and then wear that. I can’t do air conditioning until my house is much cleaner than it is and I’ve unpacked everything, and realistically I won’t manage that in the kind of time I could manage to crochet a vest in.