Posted in Developmental disability, Developmental disability service system, food, HCBS, medical, Self-advocacy, tube feeding

They’re withholding access to food.

The only food I officially, reliably have access to right now is food that doesn’t work. I don’t mean food I could make work if I fudged it a little, I mean food that I can’t sustainably live on or can’t get down my tube or things like that. I just don’t have the energy or ability to explain all the details. I don’t want anyone to think there’s an obvious easy solution just because I didn’t explain it, and I don’t want pressure to explain, I can’t take any more pressure right now.

WHAT MATTERS HERE: HOWARD CENTER DEVELOPMENTAL SERVICES IS PREVENTING ME FROM EATING.

Longer version (but still even after writing all this can’t explain the complicated food prep logistics and those are NOT the focus of this post, just be aware they’re real and every day we wait to solve this creates WAY more problems):

Doctors and a nutritionist have written orders saying I can bring cafeteria food home from the hospital, blend it into J-tube-friendly soup, and bring it back to hang in my feeding pump, or else buy and make the food all on their own and bring it in. This may have taken a lot of work on their part because hospital policy is that we’re required to be on an impossible feeding formula.

Howard staff are used to doing things like this. If I were home this were restaurant food (and the menu here is that good, easily, as well as designed in a way that fits my dietary needs perfectly well), Howard would not object to staff doing this kind of thing. If I bought it from the hospital cafeteria and brought it home, Howard would not and has not in the past objected to staff doing this. Staff know how to make food into soup. It’s part of their job. They’re good at this. The cafeteria version eliminates most of the work that Howard staff would generally have to do — they don’t have to prepare a meal, they don’t have to ensure my safety while I prepare the meal, etc. All they have to do is the part they always do anyway (because it’s the hardest part for me to pull off physically) — use a blender and a chinois. A blender and a chinois the hospital kitchen doesn’t have, and that violate hospital policy for me to bring in.

So basically it’s easy.

And Howard won’t do it.

They refuse to do it.

Which means I can’t eat safely until someone finds another solution.

I actually had this conversation with my case manager today (roughly paraphrased):

CASE MANAGER: It’s taken care of anyway if the kitchen is willing to give you a puréed diet.

ME: They can’t guarantee that the puréed diet is safe to go through a J-tube.

CASE MANAGER: Then they didn’t agree to give you a puréed diet.

ME: Yes they did. They just don’t know if their blenders are good enough.

CASE MANAGER: If they can’t guarantee their blenders are safe, they didn’t agree to give you the puréed diet.

ME: They not only agreed, they require me to on the puréed diet now, and they don’t know yet whether their blenders are good enough because we haven’t tested them yet!

CASE MANAGER: That means they didn’t agree…

ME: You’re expecting reality to work like some kind of logic game. This is the real world. It doesn’t do that.

And he utterly refused to address the fact that it was 10 minutes from the end of the business day, I needed to eat that night, my other case manager wasn’t answering the phone, and it was apparently her department not his so there was absolutely nothing he could do.

There’s always absolutely nothing they can do, and they always say something to justify whatever’s going on, even though it makes no sense.

Right now everyone’s big one is “Someone else is handling this.” I’m a hot potato and I’m someone else’s problem and it’s going to be the death of me.

And I’m not okay with that.

The puréed diet does not fit through the feeding pump. Eating long-term without the feeding pump ranges from impossible to hazardous to my health. Eating short-term without the feeding pump for a few days has already proved impossible. Forcing me onto the puréed diet forces me onto a diet that isn’t even compatible with my body long-term. (There’s no vegetarian puréed diet balanced in the way the non-puréed main patient menu I was using before is balanced, which is perfect to my needs. The only way I can eat non-vegetarian food is in a way that isn’t safe. The few vegetarian protein options in the puréed diet are things that won’t work to get what I need. It’s complicated, but suffice to say this is not actually a solution at all.)

I have already been making do with the best things I can as a temporary thing for the last few days.

I can’t sustain that.

I’m getting weak.

I was having trouble breathing earlier. Not my usual recent trouble breathing. Weak breathing muscles. That can be neuromuscular, or adrenal insufficiency, or other things, but it’s related to the weakness from not eating.

I’m dizzy and light-headed all the time.

I’m starting to have more trouble thinking than I have since I first got here.

I can lose the physical and mental capacities necessary to fight this, fast and easily.

My health is like a house of cards. And they’re pulling out the bottom.

They’ll claim to have their reasons. I already know their original claims. It’s all bullshit.

Howard wants to get rid of as many of its high-medical-needs clients as they can.

Nursing homes, the VNA, anywhere they can manage.

We’re expensive and difficult. They don’t want us.

Everything else is excuses.

Tonight, I found some stuff in the fridge. I’m eating the last of it right now, the right way, through my J-tube, with the hang-bag.

Howard staff have now been disallowed from going back into my home to help me get things. So I am not even allowed to have them bring the blender and chinois here without using them in case I could persuade the hospital to use them. (It’s unlikely I could, but I can’t even bring them because nobody’s allowed back at my place.)

They were plenty allowed to go back there when they had a cat to feed.

Now that the cat has another home, they aren’t allowed to go back.

Except, except, to check the mail.

But not into my apartment. Even though one of them found an important delivery inside my apartment without which I’d have a lot less problems. Even though I have things I need inside my apartment.

I am no longer allowed to decide what I need to get from my apartment.

It’s entirely up to my case managers.

This is not about my safety. It’s not even about their fears of liability, although that sounds plausible at first glance.

This is about them using and proving their power. And ultimately it’s about them trying to shove me out a door.

All this time ever since they started this bullshit, they have been holding a door open with one hand and shoving us with the other.

They did it until my back broke. They kept doing it even knowing my back was broken.

(That my back was broken is no surprise to them. The first stress fracture, T11, was something very very prominent in arguments with them over the years about the ethics of their actions and formal complaints of medical neglect. None of this is a surprise to them.)

They are claiming that my abilities are getting less and less, just magically.

Really, they are taking away every support I have and then claiming that the resulting situation is just naturally what would happen to me anyway.

This is evil, this is vile, this is wrong, this is truly truly evil.

I’m hungry. I’m hungry. I’m hungry. I’m hungry. I’m hungry.

I’m fucking eating and i’m hungry.

Because another fun fact: It takes time for my body to notice it’s eating again.

Like, when I’m my healthiest, it runs like this:

I forget to eat for a night, or can’t because of an upcoming surgery, or something.

I immediately eat perfectly well exactly what I’m supposed to and how I’m supposed to, the next night.

There’s still a few days lag time before I’m feeling okay.

That’s when I’m at my best.

That’s because when you eat through a feeding pump, the food goes in really slow. Like it can take 12 hours to get a 1-liter bag of food, possibly. I usually do this at night. Faster usually, but not always, it depends how my guts are working. But still not fast exactly.

So it’s not going in at the normal rate, and it just takes time for your body to react to the combination of not eating, eating again, and the whole pattern of getting food and not getting food involved.

I’m currently eating at 100 mL per hour. That means in roughly an hour or two, I will be out of any source of a balanced diet until this problem is solved.

Also understand that it’s not like I got a full liter. What I’m eating tonight is one meal. Like one cafeteria meal. Not a full day’s meals. So this isn’t even caught up by those standards.

I am better with the food but I can’t do any of this without being able to get roughly three balanced meals a day through my blender and chinois. I can’t do that without someone’s cooperation.

The doctors are doing the best they can. The nutritionist did the best he could. They wrote the orders. They got approval. The only people standing in the way of me and food right now are Howard Center. And I’m not asking Howard to do anything they haven’t done, been told to do even, before.

That means they have a responsibility to make sure I get fed.

They are not feeding me.

They are the only ones at this point not feeding me.

Nobody else needs to change anything anymore. Only them.

THEY WON’T FEED ME.

I NEED FOOD TO LIVE.

I need food to heal from this injury. Until today, I was walking more and more every day. Today I didn’t have the energy to go out walking at all.

They will go out of their way to do things that will manipulate me into leaving their independent living program.

Meaning — they will go out of their way, go to great lengths, to help me, if they think the help will encourage me to leave.

But if refusing help will manipulate me, they’ll do that too.

And they do it all the time.

And they’re doing it right now.

This is part of their ongoing pattern of doing less and less for me and then acting like they’re staying the same and I’m changing.

And they’re doing this to all of us in various ways.

Other people they’ll take out the supports, and if the person manages without them, say “You don’t need our support anymore, so you don’t need services.” Even if they do.

Other people it’s more like me, they take out the supports, then tell us how inviting and wonderful all these other programs are — Shared Living, VNA, nursing homes, group homes, assisted living, whatever.

I’m getting really tired.

When I fall asleep, I don’t know what I’ll wake up to.

I don’t know what my food reality is gonna be.

Howard doesn’t want me.

That’s what this is about.

It’s about trying to shove me out the door.

It’s not that they necessarily want to kill me even though it sometimes looks exactly like that.

It’s that enough of them — and the agency as a whole — just don’t care about that part or have convinced themselves that if it happens it would’ve happened anyway and/or isn’t their responsibility.

The hospital is the perfect place to make me lose everything.

I’m in a holding pattern.

They can take things away, but the hospital will try and step in and keep me alive. If the hospital for any reason fails to do so, then “obviously” everyone did everything they could and the “real cause” of my death is just that I have a crappy body that was gonna die anyway. Everyone can feel sad or pretend to feel sad and nobody has to feel guilty.

Meanwhile, if the hospital does keep me alive, which it probably will, then I’m nobody’s problem anymore.

People at the hospital (they don’t all agree) are saying i’m rehab’s problem and/or that I can maybe get better and go home (or be declared better because of walking regardless of preparedness for home or whether I’m actually healed) and be Howard’s problem again. Rehab is saying I’m Howard’s problem entirely and they shouldn’t be required to deal with me at all. Howard is saying I’m the hospital and rehab’s problem.

They can pass me around in circles.

It’s hot potato and musical chairs and Somebody Else’s Problem all mixed together.

Musical chairs because when they pass me around in circles, the supports that keep me alive, as well as the supports that keep me living in freedom, disappear.

One by one by one by one by one out from under me, faster and faster.

Their endgame is diabolical.

Understand, also:

Ever since I have got here, every word I have posted online has cost me physically or mentally or both, usually both.

Writing this is exhausting.

Exhaustion is not safe for me right now.

I have chosen to put myself at risk to write everything I have written, for a reason.

I’m getting more wiped out.

I’m doing a lot of this writing because I want people to know what’s happening to me and other people in my position. Because I am not unique. Because I care about people and I want to contribute certain things to the world and these things all matter to me.

So it’s not that this is easy. And it’s not that it’s without cost. And it’s not that it’s always even possible. I write when it’s possible combined with other factors. I haven’t been capable of this in awhile. I may stop being capable of it again. I don’t know.

But it matters to me. A lot. And that’s why I do it. And sometimes the reasons it matters may be obvious. And sometimes they may not. But they’re always there, even, or sometimes especially, when something seems frivolous.

But this isn’t an ability that I have on demand. And it never ever comes without a cost even when I can push myself into it. And when I do choose to do this over spending my energy on something else, there’s always a very good reason.

No matter what happens, don’t let my efforts be wasted.

But mostly, right now, I want a guarantee that I can eat whatever I need to eat however I need to eat it whether that stays the same or changes or is complicated or simple.

I’m really really really really really really really hungry.

And being hungry affects me in ways it doesn’t affect healthy people, faster than it affects healthy people. (And no being fat doesn’t mean being hungry or not eating like this, is healthy. Ever.)

And like everything I’m frustrated by the fact my body does this thing where it looks reasonably okay until it’s way not okay. When will people realize by the time they can see something going massively wrong, something is already going massively wrong? They’re not always gonna see it creeping up (although sometimes they can, and just don’t). Sometimes it’s gonna look like nothing happened until it did.

And it’d all be easier for me and them if they took steps early on instead of waiting until things got horrible.

Of course given some of the horrible things I’ve witnessed in this place, that shouldn’t be a surprise, but…

I’m hungry. I’m just hungry. Everything right now just comes back to I’m hungry.

I’M HUNGRY.

How many ways are they gonna break my body before it just breaks completely? Because that’s where all this is headed, and I saw it a long time ago, and so have a lot of people close to the situation, inside and outside Howard.

This kind of thing is happening to lots of people.

I’M HUNGRY.

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Posted in food, medical, tube feeding

Combobulatin’ due to hospital holy grail of the moment: BLENDER!!!!

Mel holding a pitcher full of blenderized cafeteria food.

They’re letting me order meals from the cafeteria, get someone to take them home and, at home, stick them a blender and turn them into something I can put down my feeding tube.

I’m exhausted from the spotty and/or crappy eating and am just happy I can do this and that there was very little fight involved. I was worried there’d be a fight. There hasn’t been. I’m just… relieved and happy, right now. And worn the hell out. And just, mind is blank, BUT I HAVE FOOD. It may not look very appetizing but it actually smells great and feels good the little I’ve been able to take in.

Their patient menu here is amazing, it’s like restaurant food. I seriously get pissed every time I stay here, because the food is the best thing about here and I rarely got to eat it even when I was

So:

Grilled Tofu – Served on a bed of Kale, sautéed with Wheat Berries and Lentils.

Hummus Plate – Red Pepper Hummus, served with Pita Chips

Cooked Spinach

And I think my staff person threw in some things from breakfast, so plain yogurt, cream cheese, and soy milk may be involved.

And I’m just… exhausted and relieved right now, my body’s busy combobulating itself. I think I just got discombobulated from all the food confusion and it’s just like when my cat got upset and recombobulated, my body recombobulates on its own without my having to do much other than, well, eat and all that..

And right now I just feel like I need to sit around combobulatin’. Not totally sure, but pretty sure. Combobulate away.

Posted in family, history, Okies

Atomic Vets Again

I’m late for Memorial Day, and I have no new posts on it planned to make, so this is it. But I made old posts. So for Veteran’s Day and Memorial Day, I always remember America’s atomic vets. I have at least one in my family — he died from the experimentation he was subjected to by the military — and until I heard his story, I’d heard of this kind of thing but had no idea my grandpa’s cousin was involved in what I’d thought of as just another part of history. And that’s the thing: History is made up of people. Every single one of us is history. That’s important. And it’s important that we understand where we and our families and friends are part of history.

US Army troops in Nevada, training for nuclear warfare.
These troops are about 6 miles
from Ground Zero. The Pixley Farm was about 120 miles away.

Ronald Baggs, My Life As a Ping-Pong Ball

My father wrote this in his memoirs about living in the San Joaquin Valley on a farm called Pixley Farm during that time period, which meant Nevada where the nuclear testing happened was right over the other side of the Sierras:

In the early 1950’s, everyone was afraid of the communists, Russia and China in particular. In 1949, the communists took control of China and Russia exploded its first atomic bomb. Russia was supplying arms, ammunition, aircraft and tanks to the North Koreans and China. China joined with the North Koreans to fight UN troops in October of 1950. The mood in the United States was one of near paranoia. It seemed that war with Russia was inevitable. The specter of WW3 loomed on the horizon. It was at this time that Senator Joseph McCarthy began his famous communist witch-hunt. He contended that there was “A Red under every Bed”. The United States engaged in extensive Atomic Bomb testing in Nevada. From our vantagepoint on the farm, the flashes of light from the tests lit up the sky behind the Sierra Nevada mountains. Following the flash of light by a couple of minutes, we were jarred by the shock wave. The roar of the blast came many minutes later. It was an eerie experience. On one occasion, just before sunrise, I was helping Dad set siphon pipes when we saw the flash. We hung on to the pickup until the shock wave arrived. When it hit, it was so strong that it sloshed water out of the irrigation ditch. On another occasion, I was knocked out of bed by a shock wave. Atomic bombs were fearsome things to a nine-year-old kid. (They are fearsome things to a 66-year-old.)

Ronald Baggs, My Life As a Ping-Pong Ball
The red marker that says E Terra Bella Ave shows roughly where Pixley Farm was located, where my dad could see the atomic testing over the mountains.

This is the part where my dad talks about meeting the atomic vet in my family, who eventually died as a result of the radiation:

One afternoon, I came home from school and there was a strange man in the living room talking to Dad and Mom. He was one of Dad’s cousins and was home on leave from the Army. I sat and listened with wide eyes as he described his participation in the atomic bomb tests in Nevada. He along with many other soldiers had sat in a trench one mile from ground zero. They had dark goggles and ear protection that was their only special equipment. The bomb sat on a tall tower. They were told not to look at the tower or to raise their heads above the edge of the trench. When the bomb went off, Dad’s cousin saw a blinding flash, and was thrown backwards against the trench wall. He said that the blast was deafening and that a sheet of hot sand whistled over his head. We talked for a while and then he left. I never saw him again. Six years later, in 1958, I heard that he had died of leukemia.

Ronald Baggs, My Life As a Ping-Pong Ball

I made a more detailed post on atomic vets awhile back, called America’s Atomic Veterans, if you want to read it.

I think it’s important to remember not only the soldiers who died in foreign countries, but also the soldiers who died right here in America. They died without volunteering to be experimented on by their own government. The government considered them expendable. Just human guinea pigs to see what the bomb would do to them. And while we’ve made progress, neither the living vets nor the people who died have been properly compensated for the mess created. This isn’t a partisan thing, and it’s not about whether you approve of the military or not, this is just messed up what happened to people.

Posted in Uncategorized

News that isn’t news: Broken bones hurt.

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.

Posted in Uncategorized

V8!

They’ve been feeding me shit.

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.

Posted in Being human, disability rights, HCBS, medical, Self-advocacy, Values & Ethics

I’m in the hospital and everything has gone haywire and my life is chaos and I can predict nothing.

I can’t write everything at once so here’s what I’ve got for now. It’s factual medical stuff because that’s the easiest thing to write at the moment. It’s not all the factual medical stuff. It’s not everything I want to say. But to write anything suitable for blogging is harder than fuck right now so I’m doing what I can.

I’m in the hospital. Many things have gone wrong.

One of them, or a lot of them, is related to osteoporosis.

I have severe osteoporosis. Mostly from having to take lots of hydrocortisone, as far as we know. I have to take it, so I can’t get rid of it, I’ll be on it for the rest of my life.

Originally they told me my bones would be normal if I were various ages between 95 and 115. I am 38.

Right now my back is broken in two places. They’re called compression fractures. One is at T11 and one is at T7. T11 is stable. T7 is not healed. They are caused by a combination of osteoporosis and moving the wrong way, generally. With severe enough osteoporosis, moving the wrong way can be as simple as sneezing or bending forward.

I have kyphosis now as a result of the compression fractures. This is common in osteoporosis as well. Kyphosis means bending forward, sometimes known as hunchback. Some amount of kyphosis is common but a lot can be a problem. I have enough to be a problem.

My bone density was just tested using the gold standard testing and is worse than before. The osteoporosis clinic are holding off on doing my Replesta (a yearly osteoporosis treatment) until we can meet jointly with my endocrinologist who prescribes the hydrocortisone (steroids) to figure out a plan.

Right now the endocrinology team have been lowering my steroid doses as much as they can, but they feel they’ve done as much as they’re comfortable lowering right now. My doses are extremely high because we figured out last year during a month-long hospital stay for C Diff, that I needed that amount between the severe adrenal insufficiency and the probable-POTS (I’ll just refer to it as POTS from now on regardless)1. There are many good reasons to suspect that the kind of hydrocortisone I have to take and the way I have to take it in my tube are causing me to not absorb it all, hence the extremely high dose needed. But we’re always looking to reduce for obvious reasons. Hydrocortisone is my most important med and my most dangerous one at the same time. It keeps me alive, I would die without it, but it also eats my body alive and is causing prediabetes and severe osteoporosis.

I am having a lot more problems.

My back doesn’t work right anymore. Any time I stand up or sit down, it hurts like hell and feels wrong in a way I can’t describe easily. That wrong feeling seem more important than the pain in telling me I’m doing something disturbing to my body.

All the things that were difficult before have become impossible now. They used to be difficult things that will damage my body. My body is now well and truly damaged and won’t even do half those things at all.

They are telling me that I can’t go home until my bones knit.

They are telling me that will take longer possibly, because I’m on steroids and have osteoporosis. I have trouble healing in general in other areas so I hope not but I suspect they’re right.

They are telling me different amounts of time but amounting to “weeks and weeks”.

They are telling me to go to rehab until I heal. Which I know full well can turn into rehab / nursing home / ICF-DD / etc. forever, not rehab-temporary and go home.

Rehab is saying the developmental disability agency should handle it. Which is ridiculous.

I am having huge tube issues. Leakage mostly. Lots of it. Nurses here can’t manage it properly. I can’t manage it anymore. It’s terrible. Doctors say they don’t know what to do.

My entire future is up in the air.

My entire future is up in the air.

My entire future is up in the air.

Vermont developmental disability policy — in ways that violate federal Olmstead law — made this worse. It appears to be a statewide problem but Howard Center Developmental Services are the ones I deal with.

There is no pleasant or acceptable way to put this: They made me scrub tables and countertops and mop floors with a broken back. I can’t sugarcoat that turd and I refuse to try anymore.

They have a new policy that people with developmental disabilities who want to remain in our own homes must physically participate in activities of daily living in order to get help with them. They have lied to me and said this has always been the policy. Everyone knows it’s new, especially when applied across the board to all clients regardless of things like additional physical disability. But it’d be wrong even without physical disability for lots of reasons I don’t have the words for right now.

They have taken advantage of me.

I take pride in physical work. I always have. There was a time when I was quite good at it, even though I’ve always had physical impairments. I have not always had osteoporosis. At any rate, I enjoy it, and I enjoy having done it, and I prefer to do things for myself. These things have been deliberately and manipulatively used against me. They have been used to encourage me to do more than I can actually do. They have been used to justify things that are unjustifiable.

For example, my main blog picture that I use a lot of places is a picture of me being violently assaulted. But it’s also a picture of an activity that I take great pride and enjoyment in: Weeding the garden. It is not too hard to get me to weed a garden because I love the feel of my hands in the earth. I love the work. I love seeing the results of my work. That’s just my personality and preferences in the world.

But.

People with severe osteoporosis in their spine should not be weeding gardens. It combines virtually everything that endangers your spine to a stress fracture. Bending forward in that way is just bad for osteoporosis of the spine. They’ve told me bending and twisting my spine are two of the worst things I could be doing. They’re certainly two of the most painful.

So.

It’s easy to push me to do this. It’s very easy. There’s so many buttons they can just push, easily, to make me obey their rules. Which at the time, for the program I was in, meant that I could not get help weeding the garden without weeding it myself. I could not participate in a safe way according to them. I had to participate the exact same thing as the staff was doing. So if I was not weeding staff could not weed. And even trying my best that meant the garden never got weeded fully.

Mind you if they wanted participation at the time, I could’ve been holding the hose and watering, or doing something else that wouldn’t strain my back. But I wasn’t. And all of that can either cause a stress fracture or cause other damage that can lead to stress fractures getting worse or becoming more likely later. It’s not good. Ever.

And they had other rules like if I started to show symptoms of heat exhaustion, which I’m very prone to, then if I tried to sit it out in the car then all help in the garden had to stop for the day. So again my garden never fully made it off the ground and I never got to eat what I grew. And not everything grew that could’ve grown.

But they said because I liked gardening all this was okay. No. That makes it less okay. That means they took advantage of my interests. They took advantage of my pride in my work. They took advantage of a lot of things. To force independence theater down my throat until it fucked up my back something awful. Again there’s no good way of telling people they had me scrubbing tabletops with a broken back.

That’s just one example.

Now it’s everything around the house.

I’m allowed to do something else. Like, I can’t do dishes, so I’ve been washing countertops while someone else does dishes. That was an improvement and I let them do it. Felt like a compromise. Was and remain terrified of losing my apartment over this. Because their definition of independence is completely fucked up. And because they force this policy on all of us. So it’s so easy to get pushed into it. One part by fear, one part by pride in your work, they know how to push all our buttons and they do.

I am proud of what I do.

I enjoy work.

I am scared of being taken as lazy.

I am scared of losing the life of my own I’ve fought so hard for.

All those things.

They use.

They use them on purpose.

They hurt us with them.

It don’t matter — whether we have osteoporosis or not. It does and doesn’t. Because this is wrong to do to anyone.

But with osteoporosis it’s also doing physical violence.

It is violent to work someone until their back breaks twice and then work them some more after you know.

Violent.

This is violence.

They hurt me.

This is not okay.

Nothing can make it okay.

Even by their definitions of independence — which they claim this is all about — they’ve made me lose independence, not gain it.

When I got to the hospital I couldn’t walk to the bathroom on my own.

My arms don’t work the same as they used to. They’re way more of a problem than walking.

I can’t sit anymore without lightning fire shooting up and down my back until I can’t concentrate on anything.

How is this independence? Even by the messed-up definitions they use?

They’ve taken away my ability to do shit for myself.

Their idea of independence is all about doing shit for yourself.

That’s not how I define it.

But they do, and by their standards, they’ve taken it away.

By my standards they’ve taken it away too. By making me dependent on them to make decisions about what I should and shouldn’t do with my body.

But by their standards, which are about being able to do shit, they’ve really fucked up any chance I have. I’ll be really lucky if I can fulfill their terrible and illegal requirements to keep my ability to live on my own.

There’s hundreds of other clients in the sort of programs I’m in. We are mostly shunted into either the independent living programs with these requirements and the ability to live in our own home, or the shared living programs where you have to move out of your home and into a staff’s home. Where it’s staff’s rules and you don’t have as many rights but you can supposedly get more care. (Often it’s more like nursing homes, no more care but everyone feels like you’re safer.) Based partly on your ability to do all this shit that didn’t used to be a requirement to live on your own.

And I’ll point out again this is massively illegal.

We have very few places to turn.

We are isolated from each other and it’s hard to organize even when we want to.

The state has a huge bunch of programs that say they’re there to protect us and give us legal assistance when our rights have been violated. They’re almost all bullshit. They look good on paper. We are shown the back door and told to leave when we manage to get in at all. Or we are given services but as badly as they can manage. The “protective” system is really hard for anyone with a cognitive disability to navigate.

So don’t tell me all the right numbers to call. I’ve called them all. Or my DPOA has. It don’t work like that. I wish people understood that. I wish people understood all those organizations serve themselves, not us. People with developmental disabilities are left in the cold, period. When we’re not, it’s sheer dumb luck.

People are also being pushed out of services. A chaplain told me her DD friend started doing really well at the independence theater so they told her she didn’t need help anymore and removed all her services. She needed and still needs them. Being able to appear to do some things some times doesn’t mean being able to do all things all times when they’re needed. People can die from lack of services. People can suffer. It’s not okay for so many reasons.

I feel like I’m trapped in a maze I’ll never see the outside of again.

Lots of things I want to do with my life.

Including show people this is happening. To me and others.

But I want to do things. Say things.

I don’t know if I’ll ever do any of them.

I didn’t even know if I’d be able to write this. Or anything bloggable.

I don’t know anything about my future.

My cat is living with someone else for indefinite. I want to be with my cat.

I want to be able to be with my cat.

I want to be able to crochet.

What they’ve done to me has taken all that away for who knows how long.

Rehab, I’m told, won’t even let cats visit. Dogs yes cats no. WTF?

Wheelchairs are torture devices now because they require sitting and sitting is the enemy. Sitting hurts my back and makes my tubes leak.

My ostomy is not healed even after a year.

My new J-tube may be ruined.

My surgeon told me when he put it in that it may be the last one he’ll ever allow me to have.

I need a J-tube to survive.

I have a gut feeling there are solutions and nobody’s finding them.

Other things there may’ve been solutions once but they may be gone by now.

I don’t know yet which is which and where is where.

My future is a big fuzzy unknown.

I don’t fear death but I want badly to be alive. There’s so much I want to do.

I want to write things that are important to me.

I want to fulfill the promise I made to make a video about feeding tubes. Even with all the complications I can’t possibly recommend them higher. I love what my feeding tube has given me. It’s given me life. I want to tell people that. I need to tell people that. It’s given me life. Life is what I want. I promised myself if it saved my life I’d make a video explaining this and that’s become too hard.

I want to do and say a lot of things about a lot of things.

I want to crochet.

I want to live with my cat.

I want to be a human being I want to be a human being I want to be a human being.

Practically nobody treats me as human. I treasure everyone who does.

Even now people act like it’s a surprise my back is broken.

Even now people act like it’s a surprise this has consequences.

How many times do I have to break my back?

How much kyphosis do I need for how long?

I have other curvature too.

Someone who has watched all this happen, really close up, for years…

They told me something.

They said, in an ordinary family, if someone gets sick or breaks a bone, the rest of the family does more of the work so that person can rest.

Going to the hospital is the first rest I’ve had in ages.

And it’s the first my abilities have improved.

And I’m working my ass off, mind you.

I do a little more work every day for physical therapy.

They’re telling me, I need to learn to feel my body.

I’m learning to feel my body in ways I didn’t know.

They said nobody can do it for me, I have to figure out what “too much” feels like.

I’ve been taught never to obey “This is too much” from my body. Never to feel it, never to obey it.

Howard Center has practically made it a crime. It goes against “independence” to ask for help when something’s too much.

They could’ve kllled me.

This kind of thing might still kill me.

I will no longer say yes to everything.

My arms don’t work in so many ways.

Everything’s haywire. It’s like having a whole new body.

I’m having to learn a whole new body.

It doesn’t move the same, it doesn’t react the same, it doesn’t feel the same.

Everything is different.

My back sends me signals I can’t even compute.

My arms do weird things every time I move them.

I have trouble getting enough air.

I have new muscle spasms.

All triggered by random-ass things I can’t predict.

And no notion of whether rehab is gonna be an ability to recover for awhile, or an exercise in frustration as they tell me to do shit that’s bad for me and don’t believe me when I tell them what I know about my own body. Whether I’ll stay a little and leave, or get trapped in their system or some other system.

And people think this is normal.

People think this is okay.

People even think this is good.

If they say it’s not good for me, they still sometimes think it’s good for everyone else. It’s not. This is wrong to do to someone. It doesn’t just hurt you physically. It hurts you all kinds of ways. All in the name of helping.

And meaning well doesn’t make this okay.

Nothing can make this okay.

THIS IS WRONG.

THEY’RE HURTING US.

IF THEY CAN SAY WE LIKE IT, that MAKES IT WORSE, NOT BETTER.

My fucking back is broken twice and even after the x-rays happened they still kept going.

My fucking back is broken twice.

My ribs have been broken so many times they don’t count it on the x-ray.

My hip has a healed stress fracture.

My body is falling apart.

Some of that is just osteoporosis.

But some of that is being forced to do shit I can’t safely do.

Also please remember that in a person with adrenal insufficiency, a broken bone can trigger a life-threatening cortisol drop or adrenal crisis.

We often don’t catch the broken bones as they happen. They show up on x-rays or CAT scans later. Often while looking for something totally different.

This is a stress fracture of the thoracic spine:

This is kyphosis stemming from an osteoporosis-related stress fracture:

I’ve got both of those going on.

My sodium has been tanking worse than it ever has since my ICU stay where I stopped breathing due to sodium and potassium deficiencies. I’m on fluid restriction to try to get it back up. I have milder potassium issues right now and right now all my electrolytes but sodium are mildly abnormal. This is all tied to the tube issues.

When I came to the hospital I was delirious. That morning I had been in my chair doing something active and engaging, and next thing I knew I woke up across the room on the floor. I’d shit myself bad enough my pubic hair was saturated with shit. I’d aspirated antacid that’d come up from my stomach. I couldn’t pull myself off the floor. I spent a couple hours dragging myself around until someone came in and called 911. I don’t remember everything clearly but I’ve been in the hospital ever since.

People think this is normal, inevitable, okay.

I’ve been watching hospital roommates get talked into rehab, nursing homes, into not going home.

I don’t see any choice but saying yes to rehab. I know what rehab is. I still have no real choices in this system.

The night before the hospital, Howard Center told me they couldn’t have anyone stay with me in the emergency room. VNA had told me I wasn’t acting like myself and wasn’t thinking straight and that my sodium must be very off. It was. But since nobody could stay with me, I opted for coming home with the woman who took me at the end of her staff shift. That meant missing the medical treatment I needed.

My friend visited me recently. They said they walked by Howard Center and wanted to just go in and scream at someone. They didn’t, fortunately. But it’s a common feeling among people who know me well. They’re angry. I’m angry. Over what happens to me but also that it’s happening to others. The numbers are such it’s impossible my situation is unique. I wouldn’t be as motivated to tell people all about this if it was unique.


Graph showing sodium levels for the past several years. The first huge dip is my ICU stay when I went alkaline and was admitted for respiratory arrest with oxygen around 60. Other large dips are often hospital stays, often involving going alkaline. The series of dips towards the end is recently. Recent dips is the lowest it’s been since the ICU stay.
Thoracic spine, 2 views 5/8/2019 12:06 pm
Clinical History/Comments:
K94.13-Enterostomy malfunction (HCC-CMS)-ICD-10; J-tube site leakage, r/o constipation

AP and lateral views of the thoracic spine are compared with the prior examination dated April 21, 2019. The images are underexposed because of body habitus. There is mid thoracic kyphosis resulting from veritable plans involving T7. There is also moderate wedging deformity of T11. these regions are very poorly seen on the last examination, and I am unable to determine whether there has been progression of deformity. Overall kyphosis looks very similar.

Impression: Compression fractures of T7 and T11, suboptimally seen because of diffuse osteopenia and body habitus.

An x-ray report describing compression fractures at T7 and T11, and kyphosis. The “body habitus” stuff is a medical way of saying I’m fat and they didn’t expose the x-ray long enough to compensate. There’s people a lot fatter than me who get good x-rays, so I don’t know why they don’t just adjust things the way they’re supposed to sometimes.

Here’s a webpage about compression fractures of the thoracic spine if you’re interested. It has a lot of information about how they work and what to do and not to do. The drawings on this blog post are from there. It’s the University of Maryland Medical Center website.

When a bone in the spine collapses, it is called a vertebral compression fracture. These fractures happen most commonly in the thoracic spine (the middle portion of the spine), particularly in the lower vertebra of the thoracic spine.

There is not one single cause of compression fractures, though the word compression would indicate that the fracture occurs because of too much pressure being placed on the bone. If the bone is too weak to hold normal pressure, it may not take much pressure to cause the vertebral body to collapse. Most healthy bones can withstand a lot of pressure and the spine will bend to absorb the shock. However, if the force is too great for the vertebrae to sustain, one or more of them can fracture. To understand a fracture, think about bending a pencil. If you place pressure on the pencil, it will bend a little then go back into place when the pressure is gone. However, if you bend the pencil too far – past its breaking point, it will crack or break apart. Similarly, the amount a vertebra collapses/fractures depends upon the amount of pressure it has to withstand.


A common cause of compression fractures is the disease osteoporosis. This disease thins the bones, often to the point that they are too weak to bear normal pressure. The thinning bones can collapse during normal activity, leading to a spinal compression fracture. In fact, spinal compression fractures are the most common type of osteoporotic fractures. Forty percent of all women will have at least one by the time they are 80 years old. These vertebral fractures can permanently alter the shape and strength of the spine. The fractures usually heal on their own and the pain goes away. However, sometimes the pain can persist if the crushed bone fails to heal adequately.


In severe cases of osteoporosis, actions as simple as bending forward can be enough to cause a “crush fracture”, or spinal compression fracture. This type of vertebral fracture causes loss of height and a humped back – especially in elderly women. This disorder (called kyphosis or a “dowager’s hump”) is an exaggeration of your spine, that causes the shoulders to slump forward and the top of your back to look enlarged and humped.
Trauma to the spinal vertebrae can also lead to minor or severe fractures. Such trauma could come from a fall, a forceful jump, a car accident, or any event that stresses the spine past its breaking point.

If the fracture is caused by a sudden, forceful injury, you will probably feel severe pain in your back, legs, and arms. You might also feel weakness or numbness in these areas if the fracture injures the nerves of the spine. If the bone collapse is gradual – such as a fracture from bone thinning, the pain will usually be milder. There might not be any pain at all until the bone actually breaks.

Treatment


The most common treatments for a thoracic compression fracture are: pain medications, decreasing activity, and bracing. In rare cases, surgery may also be necessary.


Pain Medications


Mild pain medications can reduce pain when taken properly. However, remember that medications will not help the fracture to heal. The medication is simply to help with pain control. 
To review the types of pain medications used for back pain please review:
Medications for Back Pain


Decreasing Activity


You will most likely have to limit your normal activities. You should avoid any strenuous activity or exercise. You will definitely need to avoid heavy lifting and anything else that might place too much strain on your fractured vertebra. If you are elderly, your doctor might also put you on bed rest. Older bones take longer to heal and are typically thinner and weaker than younger bones. Treat this fracture as you would any other broken bone – carefully and seriously!


Bracing


Another common form of treatment for some types of vertebral compression fractures is bracing. Your doctor may prescribe a back support (often officially called an orthosis). The brace supports the back and restricts movement; just as an arm brace would support a fracture of the arm. The brace is well molded to conform tightly to your body, like a cast for any other fracture. The brace used to treat a compression fracture of the spine is designed to keep you from bending forward. It holds the spine in hyperextension (meaning more extension, or straightening, than normal). This takes most of the pressure off the fractured vertebral body, and allows the vertebrae to heal. It also protects the vertebra and stops further collapse of the bone.
Vertebral fractures usually take about three months to fully heal. X-rays will probably be taken monthly to check on the healing progress.


To learn more about the different types of braces available to treat compression fractures you may wish to review the document entitled:
Back and Neck Braces


Surgery


Surgery to fix most spinal compression is rarely needed. With vertebral fractures, surgery, or internal fixation, is only considered if there is evidence of sudden and serious instability of the spine. For instance, if the fracture leads to a loss of 50% of the vertebral body’s height, surgery might be necessary to prevent damage that is more serious to the spinal nerves. 


If your doctor feels that surgery is necessary to treat your fracture, he or she will probably suggest using some type of internal fixation to hold the vertebrae in the proper position while the bone heals. If there are signs that there is too much pressure on the spinal cord, the bone fragments pushing into the spinal cord may also need to be removed.

Several specific complications can occur with a vertebral compression fracture. If you notice or suspect a complication, please contact your doctor immediately. 


Segmental Instability


If a fracture leads to a vertebral body collapse of more than 50 percent, there is a risk of segmental instability. Each spinal segment is like a well-tuned part of a machine. All of the parts should work together to allow weight-bearing, movement, and support. A spinal segment is composed of two vertebrae attached together by ligaments, with a soft disc separating them. The facet joints fit between the two vertebrae, allowing for movement, and the foramen between the vertebrae allow space for the nerve roots to travel freely from the spinal cord to the body. When all the parts are functioning properly, all spinal segments join to make up a remarkably strong structure called the spine. When one segment deteriorates, or collapses, to the point of instability, it can lead to localized pain and difficulties. The instability eventually results in faster degeneration of the spine in this area.


Kyphotic Deformity

Though the thoracic spine is supposed to be curved (or kyphotic), if the curve in a person’s thoracic spine is more than 40 to 45 degrees, it is considered abnormal. Sometimes this deformity is described as “round back posture” or “hunchback”. It is a common disorder in elderly women who have osteoporosis and frequent fractures. The front of the vertebrae will collapse and wedge due to the lack of normal vertebral space. This condition leads to a more rounded thoracic spine.


Neurologic Complications


If the fracture causes part of the vertebral body to place pressure on the spinal cord, the nerves can be affected. There is some space between the spinal cord and the edges of the spinal canal. However, this space can be reduced if the pieces of the broken vertebral body push into the spinal canal. The bony tube of the spinal canal cannot expand if the spinal cord or nerves require more space. If anything begins to narrow the spinal canal – such as if the vertebrae protrude into its space, the risk of irritation and serious injury of the spinal cord or nerves increases. 
The narrowing of the spinal canal due to a compression fracture can either lead to immediate injury to the nerves of the spine, or irritation of the nerves later. If the irritation on the spinal nerves comes later (even after the fracture has healed), it can cause pain and problems with the nerves not working right. The lack of space can also cause the supply of blood and oxygen to the spinal cord to be reduced. When the spine needs more blood flow during increased activity, the blood vessels may not be able to swell to get more blood to the spine. This can lead to numbness and pain in the nerves that are affected. The nerves also lose some of their mobility when the space available to them is reduced. This leads to irritation and inflammation of the nerves. This condition is called spinal stenosis. For more information on spinal stenosis, you may wish to review the document, entitled:
Lumbar Spinal Stenosis


All of these conditions may lead to the need for surgery in order to reduce pressure on the spinal cord, or to stabilize the spine. Surgery might also be necessary to reduce pain and/or the danger of neurological problems.

-University of Maryland Medical Center, Thoracic Compression Fractures

So that’s a bunch of quotes from the website that explain how serious this is and what it can mean and what to do about it and what not to do. Note how weeding gardens falls under the “worst crap you can do to osteoporosis” category. I’ve never been offered the opportunity of a garden since then. They can’t appear to deal with the idea of helping me in the garden without forcing me to break my back in the process. Like I can do nothing but the things my body shouldn’t. Like they should determine what I can and can’t, should and shouldn’t, do, and then force me to do whatever it is.

Right now?

Chest pain whenever I breathe.

When I stand up or sit down, my breathing goes wonky. Sometimes can’t catch my breath. Sometimes everything spasms and vibrates.

My bedsheets are full of bile from my J-tube stoma. (The tube is not leaking, the stoma is, it’s an important difference. The tube has been behaving wonderfully, it’s something around it not working.)

Moving my arms can range from painful to making things in my back move that shouldn’t.

Lots of these things cause a ‘warning’ feeling, like ‘something ain’t right here’ that’s more disturbing than pain.

There’s a lot of pain though.

Not just in my back.

And I can’t sit anymore. So wheelchairs are my only option for distance yet make me feel like 20 kinds of hell until I’m ready to collapse from pain but can’t.

Can’t reach behind my back.

Can’t bend forward.

Arms are weird.

Back is weird.

Breathing is weird.

Breathing HURTS.

Nobody explains fully.

People say I need to understand for myself.

Never been allowed to.

Rest is better.

Not rest all the time. Supposed to be a balance.

But getting any rest is a novelty.

Any at all.

They all say I’m working really hard.

But I feel like I’m resting a ton.

Even one day of rest I was gaining abilities instead of losing them.

One day.

One fucking day.

I haven’t had one fucking day of rest.

Even though I got fucking pneumonia.

Even though I been having seizures.

Even though, even though.

One day of rest.

Not that the hospital is safe.

But it’s safer than home.

Knowing what the hospital is like that’s scary.

They often ask, “Do you feel safe in your own home?”

No, no I don’t.

I feel manipulated.

I feel taken advantage of.

I feel like I’ve given everything just to get what everyone with a developmental disability deserves.

Given everything until it broke my fucking back and even then they wouldn’t let me rest.

They made me scrub shit.

Even when they knew.

Even when they fucking knew.

Even when they knew that moving my arm across the midline was making horrible things happen in my back.

Even after I told them.

Even apparently after other people told them.

Because I’m not the only person who stood up for me.

People who’ve known me a long time are furious.

I haven’t been furious enough.

I’ve been letting them.

I’ve been letting them parade me around do independence theater just to get the services I’ve always gotten.

Independence theater is physically violent.

It probably broke my back and it definitely made it worse afterwards.

How many times does my back have to break before it matters?

How many people have to get injured or suffer or lose services or lose their homes?

How many people participate in or justify what I call a crime against humanity?

Because the way disabled people are forced out of our homes is a crime against humanity. It doesn’t matter whether it’s recognized as one. It is one. It’s like the Victorian poorhouse. It doesn’t have to exist but people in the societies in question think it does. Doesn’t make it any more okay. In some ways makes it worse.

I’m not someone who can’t accept the inevitable reality of being disabled.

I’m someone who refuses to accept something that isn’t inevitable or right at all.

I’m so sick of seeing people who have perfectly natural reactions to this situation treated as pathological.

I had a roommate who was being shunted out of her family and into rehab.

One of many, but this one…

She objected by stating every day that she was going home.

There were all kinds of reasons she said this.

I didn’t learn till she’d been sent to rehab, that they considered this a sign of disorientation.

I’ve been disoriented since I’ve been in the hospital.

She wasn’t.

It had nothing to do with not knowing where she was.

But that’s what they do.

They call it pathological, when we resist in any way.

And they think this way automatically. It’s not a deliberate attempt to manipulate necessarily. It’s just where their minds go.

I have been delirious. This makes me vulnerable.

I am scared about my future.

I don’t know where to go. What to do.

I have weird ideas about what I want from life these days.

Part of me wants to move to the San Joaquin Valley. Yes, I know what it’s like, I’ve lived and worked there, and I’m not kidding.

But I can’t get out the hospital door, let alone on a plane.

I want to crochet lots of things.

A desert scene in tribute to my friend’s dead cat.

Something showing water and not-water in a particular way I have mapped out in my head.

A tribute to California landscapes that mean something to me.

Places where my bones seem to resonate with the land and the bones under the land in some places.

Things about my ancestors.

I want to publish the letters I’ve been writing to Cheryl Marie Wade. Which is a thing about my ancestors, actually.

Things about what’s happening to people.

Things that are just about being a fucking human being.

I want to be human.

I want to be human.

I want to be human.

If you know what I mean by that.

I want to be human.




1It’s hard to diagnose. So we’re almost certain I have it but not quite. It’s just easier to say “I have POTS” than “I have what’s probably POTS but we don’t totally know” every single time. Here’s some information on POTS if you care what it is. It basically means my body responds to standing as if it means I’ve been running uphill. So among other things I get weak and out of breath from standing sometimes. Like my gastroparesis, it could well be related to the neuropathy that runs in my family.

Posted in Being human, Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy, Values & Ethics

Good agencies make people better, bad agencies make people worse.

Something I haven’t been able to say, but is finally possible to say pretty clearly and directly. Here’s a very simplistic way of describing how to tell a good agency from a bad one:

Insert people as staff or management or whatever other jobs there are.

See if they treat their clients better, worse, or the same just by being there.

I don’t believe in “good guys” or “bad guys”, let alone something as simplistic as being able to tell by what color hat someone’s wearing. But sometimes you have to simplify things to communicate them. Like most people, I like to think of myself as a decent human being. And here I am wearing a black hat. It’s my favorite of my own hats, like the ones I bought for myself. Most of my favorite hats are actually brown and inherited from my dad. Make of that what you will.

A good agency will, by the way it’s structured, encourage people to behave with respect, responsibility, and ethics.

A bad agency will do the opposite.

A bad agency will make it so that it requires a great deal of effort to behave like a decent human being even if you’re trying really hard to do so.

A good agency will make it so that the average person will go in and do better than they otherwise would have.

A good agency will make it so that someone going in with malicious intentions will find it hard to act on those intentions or last long within the agency if they manage it.

Put simply: A good agency will make it easy to be good and hard to be bad. A bad agency will make it easy to be bad and hard to be good. Good agencies bring out the best in people, bad agencies bring out the worst in people.

A very good agency will change many people with malicious intentions for the better, through means that are themselves good. A very bad agency will change many people with excellent intentions for the worse, through means that are ethically muddy at best and outright evil at worst.

All of this is simplistically worded. But hopefully you know what I mean. I’ve spent a long time struggling to find words for this. I’m still not there yet. Life is more complicated than a cartoon version of right and wrong. But a good place makes it easy to do the right thing and encourages everyone in that direction, and a bad place does the opposite. Even if it’s never that simple. Which, of course, it isn’t.

But I’m excited that I’m able to even say this much.

Because I’m getting sick of having to add disclaimers to everything I say about HCBS or medical services like “I know there’s good people here, but…” Of course there’s “good people” here. There’s every kind of people everywhere. But that isn’t what makes an agency good or bad. Also, I genuinely don’t believe in the existence of ‘good guys’ and ‘bad guys’ so all of this is an oversimplified way of describing things anyway. But to be able to describe this at all is an enormous relief.

Also, this is one aspect of how agencies operate. This is one aspect of what makes agencies better or worse. And this is a description of a tendency, not something that’s written in stone and never changes.

But it is something.

And I was able to say it.

And given how difficult writing is lately, that feels pretty good. It also feels good to finally be able to say this without practically having to write a novel to do it. I’m tired of having to constantly reassure people that I understand they are often coming in with good intentions, that calling an agency bad is not the same as making everyone who works there ‘bad guys’, or that I don’t even believe in good guys and bad guys in the first place. And never being able to even get to a discussion of what’s happening.

I’m not good at summarizing even at the best of times. But here’s a tl;dr summary to the best of my abilities:

TL;DR: Good agencies make it easy to do good things and hard to do bad things, regardless of what kind of intent and knowledge you come in with. Bad agencies make it easy to do bad things and hard to do good things, regardless of what kind of intent and knowledge you come in with. I’m aware how oversimplified this is, but I have had a lot of trouble writing anything suitable for blogging despite many ideas of things to write. So I have managed to describe one small piece of how to tell if an agency or organization is, generally speaking, a good place or not or somewhere in between. And I’m glad I was able to do that.

Posted in poetry

A couplet my brain made

And somehow in the richest nations there’s still places where the kids are starving-poor
Yet in the barren wastelands some save their last water for the stranger at the door

I feel weird taking credit for this one.  It jumped into my head fully formed, more like remembering a song you’ve heard or a dream you just had than writing something.  But it expresses something important about the world.  I don’t usually write couplets, so that’s weird too, but it is what it is.

Posted in Values & Ethics

Valour without renown.

Painting of Éowyn and Aragorn from Lord of the Rings.

“A time may come soon,” said he, “when none may return.  Then there will be need of valour without renown, for none shall remember the deeds that are done in the last defence of your homes.  Yet the deeds will not be less valiant because they are unpraised.”

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

I am taking this quote entirely out of context, because the words valour without renown have been floating around my head a lot in recent years without context, and finding their own context within the world I find myself living in.  So don’t expect literary analysis here, nor any take on these words other than my own.  Which is both larger and smaller in scope than the original context.

Valour without renown seems on the face of it to be talking about courage — possibly especially battle-courage — without outward recognition, without going down in history, possibly even without a history existing to go down in.  And that is one piece of it, one way it can happen.  In a broader sense you could talk about courage in general, without praise in general.

But there’s one thing that this keeps distilling itself down to for me, with diamond-like precision and clarity.

It’s doing what is the right thing to do without any reason or incentive other than it being the right thing to do. Not just courage, but any right thing.  Not just recognition, but any sort of outward motivation, or any expectation of reward of any kind.

This is both simpler and more complicated than it sounds.  The hardest thing you can do but from some perspectives, easier than many of the alternatives.  Easy to describe in three words, and impossible to describe even if you had infinite words.  Not contradictory at all, yet good at producing sentences like these ones when you try to approach it wielding language.1

It’s also one of the most important things any of us can learn right now.

Then there will be need of valour without renown… Yet the deeds will not be less valiant because they are unpraised.

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

It’s no secret that the world is extremely messed up at the moment.

And my friends and I, we’ve all been noticing patterns in how it is messed up.  Patterns that we have trouble putting into words.  My friend’s cat has cancer right now, so maybe it’s for that reason that the word malignant comes to mind so strongly.  Or malevolent, or just plain evil.  As in, things that feel more like there’s a whole pattern of nasty forms of intent behind them than, say, random forces of nature seem to have, no matter how brutal.

And most of us are at a loss as to not only how to describe such a thing, but what to do about it.

One fortunate thing about the world is how many and varied the things within it are.  People alone make up billions of variations on those things, and there’s lots of things in the world besides people.  For each one of us, at any given time, there are many good things we can do for the world, and many possible ways to go about doing those things.  Some may be better things, and better ways, than others.  But which one is the best choice varies based on timing, context, person, and every possible way the situation can vary.  Sometimes there are more choices than others, sometimes there seem to be few or no choices, sometimes all the choices have terrible consequences.

But there are always many ways to do the right thing.  And each one of us can be a part of doing that.  Sometimes it’s something seemingly tiny and insignificant.  Sometimes it’s something seemingly huge and obvious.  Sometimes it’s both, sometimes neither.  And almost always, in any situation, there are many choices.

And telling right from wrong is rarely as easy as stories make it out to be.  And very few things are all right or all wrong.  And in very few cases do we learn the full consequences of our actions, either at the time or even in hindsight.

But we still should be making the effort.  In times like these more than any.

I’ve talked about this before from time to time.  Mostly in the context of death.  Personal death, death of a culture, death of a species.  But death.  Destruction.  Even the “end of the world,” as most people see it.  Situations that seem hopeless.  Where it’s tempting to say that trying to do the right thing is pointless.

It’s at those times that doing the right thing may matter more than any other time.

If the way you treat someone right now matters, it matters just as much when you are thinking about the fact that one day both you and the other person will be long dead and nobody living remembers either of you.  It may matter even more knowing that.  So why is it that when people think of ‘hopeless’ scenarios, they think that what they do doesn’t matter in light of their own death or the extinction of their species or some other large or small catastrophe? 

To me, it matters more, it always matters more, knowing we won’t always be around.  There’s always a responsibility to other people in the now, even if history as we know it ends tomorrow.  There’s always a responsibility to the people and things that come after history as we know it ends. 

Because the world is made up of so much more than ourselves alone.  And the world functions as all of us acting on each other.  Not isolated people or cultures or species floating around as individuals with no effect on the world around us.  What we do always matters whether other human beings ever seem to notice or care.

And that’s just one tiny piece of why this ‘valour without renown’ thing matters so much.  It’s the part I’ve described the most before, the part I have the easiest time putting into words.  And that part isn’t easy to put into words.

One of the most important things we can learn is to be motivated enough that if it ever comes down to it, we can choose to do a very difficult right thing to do, utterly regardless of what reaction the world around us appears to have to it. 

Sometimes it’s difficult because it’s something huge and scary.  But sometimes it’s difficult because it’s something seemingly small and insignificant when we’d rather make a grand gesture of some kind.  Sometimes it’s difficult because there are so many right things to do it’s hard to know which one to choose.  Sometimes it’s difficult because it’s hard to tell what the right thing is, or even if there’s anything you can do that’s right enough to do it.  Sometimes it’s difficult because it feels like doing nothing, even though refraining from action can be just as significant and important as acting, sometimes.  Many things can make it difficult.  But everything makes it worthwhile to try.

And trying is the most any of us can promise, I think.  We can say we’d do the right thing, but until we’re in the situation, we don’t know what obstacles we’ll be up against, from within and without.  We don’t even know if we’ll be aware we’re in that kind of situation at the time.

But we can try.

We can make the effort.

That’s all we can do.

And that’s doing a lot.

But hard times, times that people think of as hopeless, those are the times when we all need to be thinking about how to figure out a right thing we can do, and do it to the best of our ability.  Regardless of outward consequences.  A lot more depends on that than people sometimes realize.

And that’s actually a good thing.

Believe it or not.


1The Tao Te Ching sums this kind of thing up pretty well:

The bright path seems dim;
Going forward seems like retreat;
The easy way seems hard;
The highest Virtue seems empty;
Great purity seems sullied;
A wealth of Virtue seems inadequate;
The strength of Virtue seems frail,
Real Virtue seems unreal;
The perfect square has no corners;
Great talents ripen late;
The highest notes are hard to hear;
The greatest form has no shape.

Lao Tzu, Tao Te Ching, translated by Gia-Fu Feng & Jane English
Posted in Speech

Shitty speech. Kinda almost literally.

So I can get shit and shit into the shit, so I can shit the shit into the shit.

Me, just now, out loud.  I was actually trying to talk myself through taking some meds.

I said at some point I’d write more about speech.  That’s an example from a few minutes ago of using entirely cuss words and what I call “corner words”, to create a sentence that makes sense to me at least.  This isn’t fluent speech (which I have sometimes these days), this is closer to what my baseline speech has been for a couple years.

What a cussword is is self-explanatory.  Corner words are what I call words that “fill in the corners” of sentences.  I know a lot of phrases that use corner words, that I utter as whole phrases.  (Like “so I can” isn’t three words to me, it’s one word.)  This can allow for a surprising approximation of fluency under the right circumstances.

If you’re wondering, this sentence actually translates to “So I can put hydrocortisone and propranolol into the cup of meds, so I can put these meds into the feeding tube.”  It only makes sense in context, obviously.

Cusswords are not just tics for me.  I have cussing tics.  I also have spontaneous cussing (like the kind just about everyone has).  And I seem to have the use of cusswords as all-purpose placeholders. (I don’t have any of these things all the time, but when I do, that’s how it plays out.)  There’s a reason for my blog title.  Well, lots of reasons, but this is one.  I cuss a lot.  It’s my most reliable spoken words.  Sometimes my only ones.  That goes over really well.

Putting meds into my feeding tube.
Putting meds into my feeding tube.