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3:04pm
May 18, 2015
This one won’t embed, so I’m sending it as a link, and lyrics.
@feliscorvus
Not everything Planet P Project does is strictly science fiction. This one is personal, I’m sure, taken from the singer’s own experience with cancer. It hits home in all the right places for anyone who’s gone through a long illness where the outcome of life or death is up in the air. It also reminds me of my relationship with Anne (especially as it plays out in medical crises) – although Tony Carey is clearly making it a romantic relationship, my relationship with Anne is no less intense or loving for being platonic, and everything he says in the song applies to us. And I imagine something similar went on and is continuing to go on between my parents as they deal with life-threatening illnesses. (Just because my dad’s dead doesn’t mean he’s lost any connection with my mother but the physical one, and that’s almost the least important part of a relationship like theirs.)
So it won’t embed, so you have to go watch the song on YouTube. But I’ll post the lyrics here, again from memory:
When I was just lyin’ there
Poison in my blood runnin’ everywhere
I could feel you
I could feel youI didn’t see the lightning
Didn’t hear the thunder
Three little words
And the rug pulled under me
But I feel you
I stillI feel youHallelujah
Hallelujah
I could see you
So I’m aliveHallelujah
Hallelujah
I will be with you
Until we dieNow all I’m missing is a little bit of hair
But other than that baby I’m all there
And I’m there for you
I’m there for youLookin’ out the window at a hundred rainy days
All I can say is I was never afraid
Cause you were there for me
You were there for meHallelujah
Hallelujah
I can see you
So I’m aliveHallelujah
Hallelujah
I will be with you
Until we dieAnd if the same thing happened to one of you
I’d be out of my mind, I’d probably be wasted too
I don’t know if I could be as strong as you
Through the long blue
Till the light shone through
HallelujahI will be with you
I will be with you till we die
I will be with you
With you till we dieHallelujah
Hallelujah
I can see you
Baby I’m aliveHallelujah
Hey, I can see you
So I’m alive
6 notes
8:51pm
April 28, 2015
Mirror
I accidentally took a peek
At myself
Through your eyes
Right at the moment
You took a peek
At yourself
Through my eyes
Are we two people or one?
And are our eyes windows
Or are they mirrors?
3:32am
March 7, 2015
Anne was right to warn me to be cautious.
I aspirated tonight.
I’m about to go back to sleep. I can already feel the infection and/or irritation (aspiration pneumonia and/or pneumonitis, in other words) starting up. I don’t want to wake up the way I woke up a few hours ago, but I want to sleep, too, and I’m exhausted.
I don’t know what this could be linked to. I didn’t eat or drink just before bed. I burped my g-tube. I had my drainage bag on.
Cut for semi-graphic description of GJ-tube bleeding and the taste of bile.
9:40pm
January 16, 2015
AnneC.
You get my computers, and my laptop, if I die. Not that I’m planning on it soon, butyou’re the only person i’d trust to understand what’s in the computer.
Go through my Evernote folders in particular. There’s a lot in there that hasn’t been published, or that’s sat in half-finished form, or is just a title without any text. Do anything you want with it. Use it as writing prompts (you can credit me with partial credit if you want). Publish it online if you think it’s a good idea, or Lulu it, or do whatever you want. Publish it as a collaboration, I’d be honored.
But whatever happens, AnneC gets my computers – and paper stuff of the same ilk, in fact all my loose papers, papers in general, go the same way – Anne. She’ll know what to do with them. She also gets all my art of any kind. (Just be aware that the one painting of a woman under the moon with a blue background, is by Donna Williams, not by me. I don’t know why people mistake her paintnings for mine, other than that we both paint from sensing, but who knows
I need to write a will, really. I have a living wil but that’s not the same. I’m thinking about all this because of what my dad left for me. There are other very specific things I want to leave people. I’m not trying to be morbid though. Just practical. And I would love to do for other people what my father did for me – send me such the right thing that it’s almost magical.
Of course what would be even more magical would be for Anne and me to be 80 years old and reminiscing over all the wonderful times we had, and all the bad, and how wonderful it is to be alive when at times we never t
1:47am
January 3, 2015
Did you ever just feel so lucky for knowing someone you met online?
Like.. I was one click away from not following you. I was one second away from never even knowing of your existence.
I would never have been this happy.
If I’d never met AnneC, my life would be so different, and so much worse, I can’t even explain. She’s my most intimate friend now. (Intimate cognitively and emotionally, not romantically or sexually.) We’re pretty sure we met in person before we knew each other, but we can’t prove it, but it doesn’t really mater.
3:51am
December 25, 2014
And to Anne in particular
Strangers passing in the street
By chance two separate glances meet
And I am you and what I see is me
9:43pm
December 4, 2014
Lolo reminds me of Coal. feliscorvusLolo, a black jaguar, licks her spotted cub. Photo by Ali Jarekji/Reuters:)
10:09pm
October 6, 2014
➸ Existence is Wonderful: Conceptualizing Autism (autistic history: 2008)
To read the whole article (including a wonderful, wonderful graphic I have never seen the like of before or since) click the link at the top. The following is just the introduction:
This piece of writing is an attempt to explain my current conceptualization of autism.
I come at this subject both as someone very interested in neuroscience/cognition and as an autistic self-advocate.
Since being diagnosed myself, and entering public discussion (initially just to find out if there really were people who shared certain experiences with me), I’ve often found myself in the midst of discussions where the question “what IS autism anyway?” goes round and round and back and forth but never seems to be satisfactorily resolved.
Lots of theories and abstractions and oversimplifications get thrown about, and it can be quite a confounding thing indeed to even determine if the people involved are even talking about the same thing.
And yet, those of us who live every day of our lives as atypically-brained persons somehow manage to concretely exist; we are in no way dependent on the speculations of others to actually see and feel and experience reality the way we do.
This disconnect – that gulf between the very real experience of existing “autistically” in the world, and the various attempts to define autism from the outside – has long confounded me, and I would guess many others as well.
This writing has been a long time coming – over the past few years I’ve read many papers and studies, communicated with other autistic adults (and a few children and adolescents), and just generally tried to hash through all the weird linguistic and cultural matter surrounding neuro-atypicality in its various manifestations.
Basically what I want this article to be – and what I hope it at least marginally succeeds at being – is something I can point people to when they want to know what I actually think autism is.
The ultra-short version is that I think autism is best understood as a cognitive style, based on biological underpinnings pertaining to brain development, connectivity, and structure. Like any human attribute fitting these terms, autistic brain wiring can lead to both strengths and weaknesses, ability and disability, good experiences and bad ones.
If you want to know why I think this to be the case, you’ll need to read the long version – that is, the rest of this article.
Anne C., Existence Is Wonderful. Her blog is defunct now but it contains a rich amount of history both in terms of autism and in terms of life extension research. Don’t forget her easily.
(And she’s still around tumblr as feliscorvus. She and I have both discovered tumblr to be a much lower-pressure place to blog than on our main blogs. Something about writing on a “real” blog brings out our Inner Editors and we get nothing done.)
8:36pm
October 6, 2014
The one aspect of not driving that really bothers me
…is the fact that I can’t get my cats to the vet without asking someone I know, and who is local, for a favor.
My partner and I live together so he is usually able to provide transportation (and he doesn’t mind this or even see it as a favor; he’s the cats’ human too, after all!).
But I would have no guaranteed way of getting them to the vet in an emergency if my partner were on work travel or something. Or even of he just wasn’t home yet. I would basically have to go around frantically knocking on my neighbors’ doors hoping someone could help.
There really should be a pet ambulance service. Or cat-friendly taxis or something. There really should be. :/
YES PET AMBULANCE NEEDED BADLY.
Seriously.
6:27pm
September 26, 2014
The stress and being sleepy thing
Someone (youneedacat, I think?) wrote recently about getting really tired as a type of stress response. What IS that even about? Because I am pretty sure that happens to me, at least some of the time.
Right now I am effing exhausted despite having slept a decent amount and being adequately fed and coffee-enabled and everything. (And I don’t have a fever, I checked). And I think it’s because I’m stressing out about my senior cat (who is probably having surgery next week to remove a suspicious mass that could be feline breast cancer, basically).
And it’s making me remember this thing that used to happen to me in school. Where essentially, I’d get to class and find myself just feeling overwhelmingly sleepy. Sometimes the stuff I did that I got in trouble for (like getting up and wandering around the room, reading unrelated books under my desk, etc.) was stuff I was doing *just to stay awake*, because trying to sit at my desk made me feel like I was going to fall asleep any second. The weird part was…basically as soon as I got somewhere quiet or with less people in it (like if they sent me out in the hall due to fidgeting) I would have a ton of energy again. o_0 So now I’m thinking maybe the tiredness was a response to overload, because I also used to get it when I was out with my parents. Like when we would go to amusement parks and stuff…after a few hours I’d basically get super “draggy” and would want nothing more than to go back to the hotel. I would sometimes get so “tired” that I’d start feeling nauseated just from walking. But again, as soon as I got somewhere less overloady I’d feel much better.
The thing that puzzles me about this is what the mechanism could possibly be. I mean is it due to certain brain chemicals being depleted by stress and then restoring their usual levels when the stress is reduced? How can that even happen that fast? I guess it could be one of those things where a sensation of one thing manifests in a weird way because autism, but it would be interesting to know how the hell this even works because I’m sure it’s a real thing.
Oh wow – all of that is true of me as well, by the way, including getting sleepy in classroom situations and doing weird things to try to keep myself awake and getting in trouble and everything.
Although when I have a really severe sleepy-stress-response I don’t bounce back very fast at all. But then I don’t make cortisol anymore.
3:26pm
September 26, 2014
I can’t afford one of these things anyway but I don’t think I would get an iphone 6 plus even if I could! That is my (admittedly small, but fairly proportional for a short human) hand trying out the demo model at the local apple store. The screen is nice but the whole thing falls into this weird limbo between “large phone” and “small tablet”. The regular iphone 6 is a much more reasonable (for me) size but I can’t afford that either, so kind of a moot point. :p
Holy crap with the size my hands are I’m not even sure I could hold that thing WTF.
2:34pm
September 25, 2014
IT IS ACTUALLY RAINING IN CALIFORNIA. This makes me happier than you can imagine. Droughts suck!
Yes they do. My parents had to evacuate for awhile because a forest fire went right past their house. Rain is a good thing.
2:33pm
September 25, 2014
IT IS ACTUALLY RAINING IN CALIFORNIA. This makes me happier than you can imagine. Droughts suck!
2:24pm
September 25, 2014
“
Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.
Brooke doesn’t look up. She doesn’t stop stripping her stick.
Dig. Pull. Dig. Pull.
Our visitor reaches out a hand and cups it below Brooke’s chin.
I freeze. Oh God.
She uses the hand to pull Brooke’s head up by the jaw.
A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …
She does scream, but not in the way that I expect.
“I HATE BEING TOUCHED!!” she shouts.
I am flabbergasted.
Words. Self-awareness. Communication. Self-advocacy.
I know the sentence will need to be reformatted. But I am drenched in pride.
I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.
Our visitor is undaunted.
“I just want to see that beautiful face,” she says. “Lift up for me.”
I am stymied by etiquette. By deference to our host. By generational difference. By convention.
Brooke is not.
She lifts her head as instructed. And growls.
” —This has probably been posted before, but this knocks me for a loop - a blogger and her autistic daughter had the opportunity to meet Suzanne Wright of Autism Speaks, and this is how one of the noisiest voice in the autism community treated her daughter.
What knocks me for a loop isn’t so much Wright’s awful behavior. It’s the unbelievable strength and self-advocacy that the blogger Jess’s daughter, Brooke, shows when someone violates her personal space. It’s her mother backing her up for making sure someone knows that they are not permitted to touch her unless she says it’s okay. Honestly, it’s heartening. I hope Wright felt real fucking uncomfortable. She should.
(via chantrykomori) YOU GO, GIRL!!!!! (via primadraggle)
I really look forward to seeing what a child this strong will be when she grows up.
(via iamthethunder)Wow. ALL the respect for Brooke!