I appreciate all the offers of help, both personal help and also offers to help with the overall situation affecting lots of people. I appreciate it and am more aware of it and grateful than you may know.
I am able to write exactly what I write, when I write it, where I write it. Sometimes it looks like I should be able to respond. If I can I will. I’m operating at top capacity. I can’t do more. I have reasons for every way things end up. But I don’t usually have lots of choice how things end up. So I can’t always respond even when I want. And most things I want to write for any reason go totally unwritten. Or written wrong.
So here is what I have.
Please contact my DPOA (Durable Power of Attorney for Healthcare) Laura Tisoncik. Her email address is tisoncik@gmail.com. Also the Autistic Self Advocacy Network (ASAN). Or possibly Anne Corwin who is my other DPOA.
I’m putting all my effort into communication right now. What you get is my best. My brain works how it works. Not always to my own wishes or benefit let alone someone else’s. I can’t do more. I wish I could.
So please contact these other people if you want to help me and others. I am sorry I can’t always reply more directly, individually, quickly, or effectively. All these things are part of having developmental disabilities. Some of them are other things too. They’re part of why people like me have trouble getting help when we’re in trouble. Everything is designed like the obstacles we need removed don’t even exist. Then people expect us to function in ways we can’t.
Anyway I’m exhausted and want to write more but need to post this. Thank you.
Anne, Mel, and Igor, all with the same expression somehow a bit and looking kinda cattish.
It’s good to see friends.
I remember what’s underneath the visit.
I remember pain and stuff.
I remember emergency speech.
I remember what’s underneath though.
And that’s what matters.
Underneath there’s me and Anne and everyone.
I love Anne.
I love Cal.
I love Joelle.
I love Ruti.
I love Laura.
I love lots of people I haven’t named.
I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.
I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.
I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”
It’s okay to want to socialize.
It’s okay to socialize.
Never let a label determine what you think you should want.
Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.
Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”
I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.
Anyway.
It’s okay to want people in your life.
It’s okay to need people in your life.
Both of these things are equally okay.
It’s okay to like people.
It’s okay to love people.
It’s okay to socialize however you want to as long as everyone involved is really okay with it.
There’s a terrible kind of isolation very few people admit exists.
In systems like the developmental disability system sometimes all the people you ever see are staff.
For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.
And sometimes every single person I interact with for months is staff.
I actually usually like staff.
But.
They’re not the same as friends.
Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.
But it encloses you in the agency.
It wraps around you.
If all you see is staff.
All you see reflected back at you has an agency distortion.
Even if every single person individually sees you as a person.
This still happens.
It’s just not the same as having friends.
And.
I started having friends again.
Ruti. Joelle. Cal. Anne.Paragraph
And.
I was a person again.
And.
I realized I wasn’t anywhere near a horrible a person as I thought I was.
Lots of other things too.
I realized my love meant something to other people and that other people loved me.
Both of those things are important.
So many things about myself and my friends and friendship and being human.
And I started to feel human.
A little bit.
I felt like I’d woken up from a weird sleep.
It’s how I feel around people who just want to be around me and I want to be around them.
That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.
This picture isn’t just about pain, it’s why I wanted to post it again.
It’s about love.
It’s about being human.
I have a different kind of relationship with each of my friends.
With Anne it’s partly built on so much of our lives and brains working the same way.
If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.
Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.
And for that friendship that’s how it works.
So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.
And CATS.
Those are all in there too just as much as pain is.
I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.
And so many more things I can’t name.
There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.
Anne and Mel and Igor in Mel’s apartment.
The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.
I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.
Untreated, these compression fractures hurt worse than surgical pain. I had been telling anyone who would listen, including Howard Center employees, for a long time. In those words. Over and over.
I am not a lightweight when it comes to pain. This has been kicking my ass.
I don’t know how good other people are at detecting pain in my posture and stuff, but this is a picture of me shortly before my hospital stay.
From left to right: Anne, Mel, and Igor. Several people have commented that we all have the same expression somehow.
I’m the one in the middle.
Anne said that the whole time, I was standing up to avoid the pain of sitting down, and that I was moving as if my entire back and torso was one unit, like not twisting or bending at all.
This was maybe a week or a few days before the hospital.
I was in a metric fuckton of pain already.
So just to be clear: This stress fracture shit hurts worse than surgery.
And it’s not just the broken bones themselves, it’s all the muscle groups attached to them and all kinds of other shit involving how you move your body. And it got much worse than the day the photo was taken. I kinda wish someone could just draw me out a good diagram of what is even happening inside me. Because it’s really confusing. I’m good at understanding the mechanics of things, I just need some kind of reference point and I don’t have one other than this hurts like fuck.
And it hurts in new ways. Things my body isn’t used to at all. Some of them come with warnings. I can’t understand sometimes whether the warnings are saying “Hey you broke your back” — the obvious — or “Hey there’s something still going on that you need to pay attention to with this broken back of yours” — less obvious and more important to pay attention to. I can’t tell which is which here.
I’m used to broken and bruised ribs. This is way worse.
I had a roommate in the hospital who was very open about expressing how much pain they were in. I’m not always so good at that. But it seems important to document that this hurts like fuck, it has been hurting like fuck, it will probably continue to hurt like fuck, and that without the amount of meds the hospital has me on, I probably wouldn’t be functioning half as well. And even with the meds, it hurts like fuck. The meds just dull it enough that I can function through it some of the time. But it still prevents me from doing a lot of things I can normally do. And I think because I’m not good at expressing it, people don’t get how much it’s affecting me unless they’re perceptive enough or know me well enough to just know how much this hurts by how I’m behaving.
So, like, Anne (the one in the picture above) can see perfectly well just by looking at me how much pain I’m in. But a lot of people can’t. So it just gets overlooked a lot or underestimated or something. This happens to me a lot. Even around well-meaning people.
The most I’ve expressed it is by the noises I make when I stand. I don’t make them as much anymore. But they ranged from grunting or screaming, to “Shitfuck,” a word that keeps happening in these situations for some reason. Some of the nurses are really amused by the word “shitfuck”. Not that I blame them. Yes, I know I have a foul mouth, where do you think this blog got its name? Cussing happens. According to a friend of mine, cussing even actually reduces pain. So maybe there’s a reason we cuss when things hurt.
Anyway, I’m used to having my pain underestimated, but you’d think the diagnoses and x-rays and such would speak for themselves. And I still wonder how many times I have to break my back to have a broken back taken seriously by everyone. Because literally everyone should take such a thing seriously in anyone no matter what. FFS. It hurts.
Er, Nutren first, then we tried some crap called Replete.
And I swear I tried.
I went to a really low feed rate to tolerate it at all.
But I spent all night feeling like I was going to puke and I couldn’t take it anymore.
My DPOA told me to talk to my doctor.
My doctor turns out to be the same guy who was around last summer when the hippie food let me leave the hospital.
So I went in expecting a fight and he agreed with me and tried his best. So I got a one-time cafeteria pass today and I’m not getting a meal tonight.
Which is good and bad. I shouldn’t skip this much food. But I was getting to where I was gonna start refusing it anyway out of sheer exhaustion. Feeling that sick when you eat isn’t cool.
What I got in the cafeteria is no substitute for a real meal. But it’s better than feeling sick at least for one day.
And one thing I got is this:
Selfie with V8 and J-tube MIC-KEY button feeding tube.
Right now this is incredibly satisfying to just get a frigging V8.
Which is water, tomatoes, carrots, celery, beets, parsley, lettuce, watercress, spinach, salt, vitamin C, beta carotene, natural flavoring, and citric acid, according to the ingredient list. Nutren and Replete both have water and corn syrup as the first two ingredients. Sugar in that amount is useful for some people but not so much for prediabetics.
Anyway…
V8 FTW!
P.S. I fell asleep writing this and woke up around 4 in the morning. My nausea was a million times less tonight. Now just to get all this to work with hospital regulations & red tape, wish us all luck there. Because clearly I was not tolerating the formula, and I need to do something different, and we already know what I do tolerate, so the next thing is just to make sure the right people do what makes sense, which often seems like too much to ask.
On the post where I mentioned an old blog post on a deathling blog. I think I attributed it to Caitlin Doughty because it was her twitter I found it on. It turns out not to be her after all. Someone posted a full correction to all the things I got wrong about who wrote it, who actually died, and so on. I feel really bad about this on many levels. One, that I got it wrong in the first place. And two, that all I can do even now is post this I can’t go back and correct it. I can’t respond to the correction directly — but thank you for telling me! I just lack the spoons right now cognitively and physically. And this sort of mistake is part of the combination of being cognitively disabled and pushed to nearly my breaking point lately. I know everyone makes mistakes. But mistakes happen for different reasons and that is the reason for my mistake here. And this kind of mistake will keep happening because there’s not a lot I can do to prevent it. It has nothing to do with being careful, or how much I care, or anything about motivation. It never has had anything to do with that and it’s not going to start having to do with it now. I’m just going to mess up in certain areas, over and over again. So I’m posting a correction. But know that i can’t always post my correction, I can’t always screen comments, I can’t always post comments, and I certainly can’t avoid this particular kind of mistake. So these things are going to happen and I’m not even always going to be able to do this much, so I wanted you to know it’s not because I don’t care. Hell, I can’t even do categories or tags on this post. All I can do is this. What I’ve done, what I’m doing, right now. This is the most I can do.
So I’ve been struggling to keep my potassium at normal levels even with supplements. I’m losing fluid continuously out a hole that has to wait a long time to close naturally. Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that. Even after the antibiotics stopped, still losing lots of fluids, still going alkaline. (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)
So my potassium was going low and staying low. Not as low as it’s been in the past. No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization. But low potassium is too low potassium, and even with supplements it wasn’t staying up.
The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds. She thought this is great. (She seemed thrilled to have a patient whose main food craving is vegetables. She must not get that a lot.) Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting. She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt. I’d never heard of kombucha but it is easier to digest and it smells good.
And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!
My free food cafeteria pass!
So I go in there and the highest-potassium food in the cafeteria is coconut water. Which comes in the most ridiculous hippie-oriented packaging. So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list. But mostly coconut water because it has the highest potassium.
And it works, my potassium is up.
But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:
Kombucha, coconut water, and V8. The kombucha and the coconut water feel like I’m eating hippie food.
But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here. So the hippie food works!
So I guess I will be eating lot of hippie food for a while. If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.
But the hippie food… wow. My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up. She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness. (She gets very elaborate with her teasing but it’s all friendly.)
But in this case the hippie food is working, so I’ll put up with any jokes. I find it kind of funny myself.
SERIOUSLY look at the packaging on that coconut water…
Click for full article by Cal Montgomery on stopping skin shock as torture at the Judge Rotenberg Center, an institution in Massachusetts. Spread this around.
Excerpt below:
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).
