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12:46am July 31, 2015
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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.

1:16am July 27, 2015

Was trying to get more hair pictures now that my hair is fully dried (and super shiny), but Fey had other ideas, still does (she’s blocking my view of the screen even now).

Argh, I tried to tag this #elderly cats and somehow got #elderly citizens.  It seems like tumblr is autocorrecting a lot of my tags in messed up ways lately.

4:13pm July 26, 2015

So I finally had a chance to do something I’ve been meaning to do all summer – an oil treatment on my hair.  (Don’t worry, I never do hot oil treatments and I only shampoo my hair at all, if I’m doing an oil treatment and need to get some of the oil out of my hair after.  So basically all I put into my hair generally is very occasional oil, and then the mildest shampoo that will still rinse the oil out enough for my hair to dry properly.)

My mom had sent me what she called a “conditioner”, but it’s actually just nearly every kind of hair oil imaginable, combined into one bottle.  There’s no other ingredients but various plant oils and possibly shea butter.  So I decided to try it out.  (Normally I wet my hair, put on coconut oil, rinse it out, put in olive oil, rinse that out, and shampoo if necessary.  And I also have a spray I’ve made out of coconut oil and olive oil and water that’s much milder and helps moisturize my hair in between oil treatments.)

So I used the multi-oil-thing, and then I left it on for a few hours, and then I shampooed my hair with the mildest shampoo I have, which is SheaMoisture Coconut & Hibiscus Curl & Shine Shampoo.  And this is the end result so far – long, soft, shiny, wavy/curly hair that’s much less frizzy than it started out,  It’s no longer trying to stand on end sideways, either.

1:12pm July 10, 2015

More summer hair.  This is AFTER staying up most of the night detangling it and brushing/combing it through so it’s straighter than it normally would be and the oils are distributed properly and stuff.  (I didn’t have the energy to do the oil treatment that people keep reminding me I should probably do.  Doing one of those requires enough energy to keep washing the oil out all day if necessary.) And I swear it’s actually frizzier than when I started (at which point it was incredibly tangled, I lost a lot of hair just getting the tangles out).  Also it’s getting really long.

3:53am June 29, 2015
Summer hair.  Seriously this is what happens.  (And no, I can’t write much longer right now.  I’m still doing a couple big crochet projects and my brain seems to have switched off certain language functions to allow for that.)

Summer hair.  Seriously this is what happens. 

(And no, I can’t write much longer right now.  I’m still doing a couple big crochet projects and my brain seems to have switched off certain language functions to allow for that.)

12:38am April 27, 2015
melbaggs: My hair, altered by photo manipulation to look how it often looks to me, despite actually being quite dark. Also there’s something in here of how the world visually looks a lot of the time. Textures, not objects.

melbaggs:

My hair, altered by photo manipulation to look how it often looks to me, despite actually being quite dark. Also there’s something in here of how the world visually looks a lot of the time. Textures, not objects.

2:52pm April 25, 2015

Hair’s gettin’ so long I can barely stretch my arms out long enough to capture all of it in a selfie. And I’ve finally recovered from the disastrous case of bedhead I got in the hospital. Even though it required shedding enough hair I could have built an entire cat out of it. (One of these days I should learn hair art instead of just throwing it out.)

12:15pm April 16, 2015

Every grey hair is a sign I’ve made it this far. I hope they all turn grey one day.

9:05pm March 30, 2015

Is it really that surprising…

…that over the course of seven years, someone’s hairstyle would change at least once?

Not trying to put CI on the spot for mentioning it. It just feels weird to get questions about why i ‘changed my hairstyle’ when my hair has been slowly (okay, actually my hair grows faster than normal) and steadily for years and years now.

Of course I did spend a lot of that time with it braided and up under a snood and a scarf, so changes could look more abrupt than they were.  But I’ve literally done nothing to my hair other than letting it grow and trying to keep it untangled, and doing oil treatments when it goes dry.

ETA: Plus I have a friend who decided to grow hir hair at the same time,and we like comparing notes

10:57pm March 13, 2015
What an overly polite nurse described as the most free spirited hair she’d ever seen. Then asked why I was “braiding” it. I had to explain I wasn’t braiding it, I was removing hair ties before they needed cutting out. Then a very blunt RT came in and told me she’d never seen such bad bedhead in her life. I’m not sure which was more amusing.

What an overly polite nurse described as the most free spirited hair she’d ever seen. Then asked why I was “braiding” it. I had to explain I wasn’t braiding it, I was removing hair ties before they needed cutting out.

Then a very blunt RT came in and told me she’d never seen such bad bedhead in her life.

I’m not sure which was more amusing.

11:26pm January 30, 2015
My hair grows fast.  Also I’m becoming rather attached to my dad’s orange Sawtooth Mountains, Idaho shirt.  Not least because getting my dad’s clothes has shown me how many colors I’ve ignored as possibilities, that I actually look pretty good in provided it’s the right shade.I still have a closet full of brown, yellow, and blue, because that’s my favorite unobtrusive colors, the ones that don’t bother my eyes. But I’m also adding all my dad-clothes to that closet, and they come in all colors, although he seems to favor dark versions of red, blue, and green (and others I’m forgetting because I’m in the bathroom, not the bedroom) for the most part.  I like the dark colors he likes, they remind me of nighttime.

My hair grows fast.  Also I’m becoming rather attached to my dad’s orange Sawtooth Mountains, Idaho shirt.  Not least because getting my dad’s clothes has shown me how many colors I’ve ignored as possibilities, that I actually look pretty good in provided it’s the right shade.

I still have a closet full of brown, yellow, and blue, because that’s my favorite unobtrusive colors, the ones that don’t bother my eyes. But I’m also adding all my dad-clothes to that closet, and they come in all colors, although he seems to favor dark versions of red, blue, and green (and others I’m forgetting because I’m in the bathroom, not the bedroom) for the most part.  I like the dark colors he likes, they remind me of nighttime.

9:12pm January 20, 2015
This is possibly my favorite childhood picture ever (it ties with one where i’m climbing a tree… maybe).  We were in the woods, and my mom had put flowers in my hair and wanted to photograph them.  Meanwhile I was staring at the hillside, it was na overwhelmingly reddish-brown color and I was losing myself in that, as my mom snapped the picture.  And apparently playing with my hair.  It reminds me strongly of a photo of Donna Williams as a child where she was standing ‘staring at nothing’ and playing with her hair. My parents were inclined to describe my staring at nothing as “thoughtful”, but it was more the absence of conventional thought, and a whole lot of sensing.  I guess I like the photo because it reminds me of that time, and because (to me) the presence of that sensing mode of thought is so abundantly clear here. But I couldn’t explain why.

This is possibly my favorite childhood picture ever (it ties with one where i’m climbing a tree… maybe).  We were in the woods, and my mom had put flowers in my hair and wanted to photograph them.  Meanwhile I was staring at the hillside, it was na overwhelmingly reddish-brown color and I was losing myself in that, as my mom snapped the picture.  And apparently playing with my hair.  It reminds me strongly of a photo of Donna Williams as a child where she was standing ‘staring at nothing’ and playing with her hair.

My parents were inclined to describe my staring at nothing as “thoughtful”, but it was more the absence of conventional thought, and a whole lot of sensing.  I guess I like the photo because it reminds me of that time, and because (to me) the presence of that sensing mode of thought is so abundantly clear here. But I couldn’t explain why.

1:45am January 13, 2015

upside-downchristopherrobin replied to your post: Actual conversation between me and a h…

What colour did you want, just out of curiosity? :)

Green, blue, or purple, but ones that faded in specific ways and not others  (preferred purple to fade to blue, rather than to hot pink, for instance).

8:52pm January 7, 2015

clatterbane:

coffeepotsmokin:

This is all painfully accurate

My life is so much better now that I know to keep combs and brushes away from my (curly) head.

CW for TMI:

They forgot two of my pet peeves – finding 8 or more inches of hair and pulling that much out of either my stoma (while cleaning it) or my butt (in the shower or bathroom).  I’ve pulled stoma hair out in front of people before (sometimes with bile and crud clinging to it) and after they get past grossing out, they go “HOW!?!?!?”

3:30am December 31, 2014
Among the belongings sent to me after my father died, were his handkerchiefs.  I wasn’t really sure what to do with them.  I didn’t want to blow my nose into them.  So I decided to wear them in my hair instead, like my mom does when she’s doing heavy-duty house-cleaning.  And I really like the way it turned out. Every piece of clothing you see on here is my father’s except the jeans, which are mine.  I’m wearing my father’s handkerchief, my father’s suspenders, and my father’s ultra-comfortable flannel shirt.  The necklace is a see-through stainless steel locket with his beard hairs in it – I will treasure that forever above all of my other jewelry combined.  (And I’m so happy it’s stainless steel, something my body can’t corrode!) I am realizing from the sheer comfort level of his clothes, the sensory sensitivities we must have shared. There’s all these little things, including things about his autism, that I never put together until after he died, or shortly before he died.  They’re maybe things I should’ve known, been more observant, but somehow never did know.  Like the way he and I see rocks is very similar.  When I showed him my rock friends, he understood, and picked out more rock friends for me to send after he died. I have a lot more to say about what wearing his clothes means to me, but right now I lack spoons to do it, and I’m supposed to be taking my meds right now so I’m going to go off and do that.

Among the belongings sent to me after my father died, were his handkerchiefs.  I wasn’t really sure what to do with them.  I didn’t want to blow my nose into them.  So I decided to wear them in my hair instead, like my mom does when she’s doing heavy-duty house-cleaning.  And I really like the way it turned out.

Every piece of clothing you see on here is my father’s except the jeans, which are mine.  I’m wearing my father’s handkerchief, my father’s suspenders, and my father’s ultra-comfortable flannel shirt.  The necklace is a see-through stainless steel locket with his beard hairs in it – I will treasure that forever above all of my other jewelry combined.  (And I’m so happy it’s stainless steel, something my body can’t corrode!)

I am realizing from the sheer comfort level of his clothes, the sensory sensitivities we must have shared. There’s all these little things, including things about his autism, that I never put together until after he died, or shortly before he died.  They’re maybe things I should’ve known, been more observant, but somehow never did know.  Like the way he and I see rocks is very similar.  When I showed him my rock friends, he understood, and picked out more rock friends for me to send after he died.

I have a lot more to say about what wearing his clothes means to me, but right now I lack spoons to do it, and I’m supposed to be taking my meds right now so I’m going to go off and do that.