Posted in Being human, cats, joy, Uncategorized

Friendship and Love and Resonance and CATS! A closer look at that picture.

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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.

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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.

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Posted in Being human

Maple Syrple

Roses are red, violets are purple
Sugar is sweet and so’s maple syrple

Roger Miller

That quote will never not be hilarious to me.

THIS MATTERS.

A pot of violets an da bottle of maple syrple.

Little things matter.

Little things people consider frivolous matter.

Sometimes they matter more than most things.

They’re part of the humanity that I get denied every day.

Just being allowed to care about shit like this.

Being allowed to have little things like this.

You only notice when people start trying to take it away.

Trying to make it sound like it’s not important to have things like this in your life.

Sometimes they do crap like decide this is all your life can be, and that’s all kinds of fucked up.

But other times they act like you can’t have this.

Like you can’t or shouldn’t care about things like this.

Especially when you’ve got lots of serious shit going on.

People act like you should be super-serious all the time.

And only care about certain things.

And care about whatever the hell they think you should care about.

And so you hold onto shit like this.

Which is why it pisses me off even when people say that people shouldn’t post their dinner on social media.

Maybe their dinner matters.

It’s actually little things ike this that make up everyone’s life.

Little bits of the world.

They matter.

Noticing them matters.

Living them matters.

Life without them, especially forced life without them, doesn’t work well.

People need things like this. Different people need different things. But everyone’s got things.

I’ve loved the maple syrple line my whole life. Not stopping now.

When people share things like this with each other it’s being social about little things we care about.

And people who like to do that like to do that, and that’s fine.

And people who like to keep it private, that’s also fine.

It’s just, there’s all kinds of ways to deny someone’s humanity.

And denying people these little weird bits of life, it doesn’t sound like much, but it does deny part of your humanity.

And it has a bigger impact than you’d think.

So think twice before you make fun of people for posting things like this, or pooh-pooh it to people, or say that people who like things like this are stupid or something. You don’t know who you might be hurting, or how deeply.

People don’t understand what gets taken away from you.

And I don’t know how to explain.

All I can say is:

MAPLE SYRPLE MATTERS. PERIOD.

Posted in Being human, books

Compassion For Cities

My friends say that one of my best personality traits is compassion: I really care about other people. Everyone has some personality trait that’s good. I don’t like when people stereotype you based on labels (both official and unofficial) so that you can’t have a certain trait. As a person with developmental disabilities, I get a lot of autism stereotypes and a lot of intellectual disability stereotypes thrown my way. That means some people expect me to be a heartless mind and other people expect me to be a mindless heart. And they actually believe those expectations to be honoring my strengths. But that’s not necessarily how it works. There are autistic people with huge strengths or interests in social areas. There are people with intellectual disabilities whose main strengths or interests are intellectual. We don’t have to have a stereotypical set of strengths.

Arguably the most famous — in terms of sheer name recognition — person with autism in the world is Susan Boyle. Yet you never see her on lists of famous autistic people. Even though practically everyone everywhere knows who she is. She’s world-famous. And I always wonder if she doesn’t make the lists because her strengths stem from social skills. The way she sings, she has to identify somehow with the song. She has to form a personal identification with the character she’s potraying. If she can’t do that, she can’t sing well. If she can do it, she sings spectacularly. Her entire strength that makes her famous is based on social and emotional skills and empathy. And I suspect that makes her not so well-received even though she’s officially diagnosed with autism and everything. And she doesn’t make a big deal about her labels, so she doesn’t push the issue. But I always feel bad not seeing her on those lists2, and I always wonder how much of it is because her biggest skills are social and emotional and that doesn’t fit a stereotype of what kinds of things we can be good at.

And people will either doubt your disability or doubt whether you really have the strengths and interests you do. They’re always trying to prove that autistic people’s empathy isn’t real, that the intellectual achievements of people with intellectual disabilities isn’t real, that autistic people can’t be compassionate and people with intellectual disabilities can’t be geeky or nerdy or have cognitive talents.

And they’re always trying to say that different disabled people are allowed to have certain things and not others. Each type of disabled person is supposed to be missing one thing and have something else: Body, mind, heart, whatever. So we have bodiless minds, mindless bodies, heartless minds, mindless hearts, and whatnot, and that’s supposed to be a good way of looking at us! The truth is that however you divide it up, every person really has a mind, a heart, a body, a soul, whatever you want to call these things. I don’t personally divide people up that way, but if you’re gonna, those things are universal. Disability doesn’t mean one of them is missing.

So it’s important to me to be able to say compassion is one of my strengths without having to justify it against what type of disability labels people think of me as having. It’s moreimportant than usual because so many people say people like me can’t even have real compassion or empathy or anything like that. That we can’t have social strengths or social interests. And it’s totally fine to fit a stereotype, but it’s also totally fine not to. And it’s important to recognize that these are stereotypes, and that they’re wrong, that nobody can be confined like that.

So here goes: I really give a shit about people. I really, genuinely give a shit. It doesn’t mean I get everything right in showing it. It doesn’t mean that I’m some kind of model citizen or something. It doesn’t mean I can’t be an asshole. It just means that overall I do care about people. I am genuinely interested in knowing about people, learning about people, learning about how people’s minds and lives work who are very different from me. I like learning about people’s lives. I like learning about what people need and trying to make that happen. I like learning about people like me, people different from me, all kinds of people. I love documentaries that feature people, and biographies. I love thinking about what it’s like to be someone else.

And my extreme attachment to objects is the exact opposite of how people take it. People take that as, “You treat people like furniture.” No, it’s more like I treat furniture like people. At least, that’s a closer way of putting it than the way most people would. I automatically have always seen everything in the world as alive, having its own point of view, deserving thought and compassion. It’s not that I think rocks are little mirrors of human experience. Rocks are their own thing. Their perspective is a rock perspective, not a human or animal or “living thing” perspective. But I still see them as having one, as interacting, as feeling, in their own way. I can’t explain it in words and I’m not sure it’s possible. When I try, people get the wrong idea.

The cover of Dora Raymaker’s book, “Hoshi and the Red City Circuit,” a sci-fi detective novel I really like.

Dora Raymaker wrote a book called Hoshi and the Red City Circuit. I didn’t know what to expect from it. I was blown away. Because the main character has this connection with the city she lives in. With the place, and the spirit of the place. It’s not part of the main plot, or whatever you want to call it. But it’s there, throughout the whole book. On a sensory level, on a cognitive level, on a spiritual level, it’s just there. And she writes better than anyone I’ve ever seen, about what it means to have that kind of connection to something other people see as inanimate.

I have that kind of connection to places myself. There’s parts of California that feel like they’re just in my bones. The redwood forest, particularly Redwood Terrace, I have a connection that reminds me strongly of Hoshi. But also those hills, those hills full of dry yellow grass and oak trees. And the long flat expanses of the San Joaquin Valley, that most people think are just ugly. All those places are part of me and I’m part of them.

And that’s not a lack of empathy. It’s not giving human attributes to things that aren’t human. It’s extending empathy and compassion to things that most people in some cultures wouldn’t. It’s having those things more broadly, and there’s nothing wrong with that. There’s nothing wrong with not doing that, either.1 But there’s certainly nothing wrong with seeing the world the way I do, and I wish people wouldn’t misrepresent it as the opposite of what it is.

Go read Dora’s book though. Empathy and compassion for a city is a hard thing to pull off in words and Dora does an amazing job. I went into that book with sorta mediocre expectations and was blown away by what I actually found there. I don’t have the words to do it justice. I first was just trying to use it to keep out of delirium during a hospital stay last summer but it did a whole lot more than that. Books don’t usually hit me that hard out of nowhere and this one really did.


1Not everyone has to have the same strengths and interests. I’m only saying this because sometimes when I say I value certain traits, people think I mean that people are bad or inferior if they don’t have those traits. That’s not what I mean at all. I’m just valuing things that have been robbed of their value or recognition by people who don’t want to think of people like me as doing those things ever at all. I think it’s great that there are people who really aren’t interested in people and are more interested in abstract intellectual pursuits, who do fit certain stereotypes. That’s a perfectly fine way to be as well, and so are most of the ways people can be. I think it’s great that there’s different kinds of people with different skills and interests. I don’t think everyone has to be like me. I just )

2 Sometimes it can feel bad being on this kind of list. But what I don’t like about seeing her on those lists is what it means about how other people see her. I doubt she cares one way or the other, she might even find it slightly unpleasant. It can feel like being recognized for a diagnosis rather than being recognized for your work. And being recognized at all can be uncomfortable for some people: I always want people to see my art but I’m less thrilled about them seeing me. So when I say I feel bad about her not being on a list, it’s not that I think she’d feel better, it’s that I think people leaving her off shows something about how people see her.

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 Being human, cats, language

Eighties computer memories: PAWS

People often ask me how I learned to type so fast.  I don’t think they’re prepared for how normal my answer is (nor do I  think they’re always intending to ask me the same question I think they’re asking when they say it).  Because I tell them, and then I later hear it getting repeated in forms so garbled I can’t figure out how they came up with it.

It really goes like this:

I was in mainstream school for grade school (went to a public school up to fourth grade, private school repeating fourth grade then after).

I learned to touch-type the exact same way every other kid in my class at my second school learned to touch-type.  I just happened to do it more often and more persistently than most, for lots of reasons.  We had little patches we could get for learning and passing tests for different keyboarding speeds.  I practiced at the same computer program everyone else did (except much more constantly than anyone I met), until by the time I left that particular school I had a patch for 120 words a minute.  (They started at 20 or 30 and you worked your way up by 10s, if I recall correctly.)

Screenshot from Microtype Paws, with a picture of a keyboard, a cat with a smiling face, the practice line “He had cake and cola near the lake,” and a speed score of 140 words a minute.

There were probably a lot of reasons I did this more often than most kids.  But the main one was that I really liked cats.  And the computer program  (called Paws) that taught us typing was cat-themed.  That’s really all.  That and I enjoy things other people often find tedious or repetitive, and I have the potential for really good muscle memory.

But seriously?

It’s not complicated.

I just used a computer program I happened to be really drawn to.

Over, and over, and over, and over, and over, and over, and over.

For years.

And I had the right combination of skills, interests, and opportunity to benefit from that constant repetitive practice.

Also, I didn’t have an Apple at home, so I couldn’t use the computer program at home.  And, as I said, I loved the part about there being a cat.  So I played it like it was a game, and I worked my way up the speeds until I hit 120 words a minute.

I wasn’t the fastest kid in school by any means, either.  I was up near the top but there were a couple kids who got up to 130 or 140.  Which are speeds I can do now, but not then.

People seem to expect me to have been in some kind of 100% disability-segregated environment my entire life (no) and to have always had the exact same combination of abilities and difficulties they see at whatever point in time thy met me (no, no matter what those abilities are).  So somehow I tell people I learned to type using a computer program with a cat in it, and it morphs in their head into some weird story about a program (as in “special disability program” — no) that taught me to communicate (no) using an extra-special keyboard (no) that was decorated with cats (no).  Or things along those lines.

No.  I went to a grade school/middle school for a few years, that had a very nice computer lab full of Apple IIe and IIGS computers (I loved the IIGS keyboards, they had relatively thin flat keys that were much easier on my fingers than the big clunky IIe keyboards).  We didn’t have Apples at home so that in itself was a novelty.  I spent a lot of time in there playing the same keyboarding game that all the other kids learned to type on.  I just spent more time doing it than most kids did.  And, as I said, had the skills and opportunities to make use of that practice in a way where my performance improved with time.  And that’s really all there is to it.

Oh also, Paws had a combination of different typing games.  There was usually a tutorial, some stuff typing the specific letters you were learning, some stuff using those letters in words and sentences, and a few different games involving the cat himself.  We also had to, at more advanced stages, do typing tests using a part of the program that timed your typing on a full screen for a certain period of time, typing entire paragraphs.  That part annoyed me a bit because it was one of the few parts of the program where the cat wasn’t pictured.

I suspect Paws is far too slow and retro and uncomplicated for most modern kids when it comes to computer games in general, but I really don’t think it’s in any way lost its capacity to teach touch-typing.  And I think I’d still enjoy it if I was trying to learn.

Also here is an emulated version of Paws 1.1 on archive.org if you want to try it out.

And just a reminder; Being disabled doesn’t mean your life fits into some kind of Template For Disabled People Only.  In fact, it never does, although some of us hide that fact better than others (and some have it forcibly hidden for us), and some of us appear to resemble the existing templates more than others.  But nobody actually fits the Official Disability Templates 100%, and most of us don’t even come close.  When most disabled people say computer program we mean the same thing everyone else means by it, we don’t mean special disability programming ™ that happens to be related to computers (although there’s plenty of those in the world too).  And unless we have some particular reason that touch-typing isn’t something we can learn, and unless our disability involves our hands in certain particular ways, then if we can touch-type, we’re likely to have learned touch-typing in any of the huge number of ways that everyone else learns it.  Which in my case was Paws.

Posted in Being human, joy

What I’m eating these days

I haven’t hit on exactly the right foods to eat, yet, or maybe the right amounts.  But what I’m eating is both so much better for me than the Nutren was, and feels so much better, that I wanted to tell people what my current set of foods generally looks like.  Note that I am not telling anyone else what to eat — what food works for someone varies so much by person, culture, and circumstance that I’d never presume to tell anyone else what they ought to be eating.  Plus it’s much healthier (and happier) to not worry about food too much than to spend all your time freaking out about whether you’re eating the ‘wrong’ kind of food or not. 

Homemade blenderized food, and a water/Powerade mixture, hanging from an IV pole with a feeding pump.

So there’s several elements that go into most meals.  I don’t eat the exact same thing every time though.  I sort of have an overall category, and then I can pick and choose what I want from within that category.  So generally my food looks like this.

Food (combo of something from each category put into high-powered blender with water, then chinois, then feeding pump):

  • Beans:  Black beans, black-eyed peas, lentils, split peas.
  • Texture vegetable:  Squash (any of a huge number of kinds), sweet potatoes
  • Green vegetable:  Spinach, collard greens, peas, asparagus
  • Fat: Olive oil, flax oil, avocado, guacamole, coconut milk curry, etc.
  • Seasoning: Soy sauce, Sriracha, fish sauce, assorted kinds of chili peppers, spices, sauces.
  • Other things: Mushrooms, seaweed, rice, sunchokes, assorted veggies.

Drinks (usually put directly into  feeding tube with a syringe, sometimes put in feeding pump):

  • Water
  • Coconut water
  • Coffee
  • Tea (mostly green or oolong)
  • Kombucha
  • Powerade Zero
  • Kefir

We started calling certain vegetables texture vegetables because at first we were so focused on getting me enough beans, that the texture of the resulting soup felt and behaved like cement once it got into my guts.  So we found that adding squash or sweet potatoes got rid of some of that cement quality.  Not that that’s the only reason I’d eat squash or sweet potatoes, but that was definitely the original purpose they served.

Anyway, while this is far from perfect, it’s so much better than eating Nutren, and I’m satisfied with it more or less.  I also like that unlike Nutren, I can vary foods within each category very easily.  So I get more of a variety in my food than I did on Nutren.

I’m not a vegetarian and have no desire to become one.  But my food ends up being mostly vegetarian for a couple reasons.

One is just that I prefer vegetarian foods most of the time.  Not for ideological reasons, but I just like it better than meat.  With notable exceptions usually involving hot pastrami sandwiches.

The other is that since I’m fed by J-tube, my food takes a long time to get into my body.  That means it’s sitting out in a feeding bag for hours while it goes through a feeding pump into my body.  Meat goes dangerously bad faster than, say, beans.  So hanging blenderized meat in a feeding bag is usually more hassle than it’s worth.

But I do use meat or animal products in limited ways.  Like I’ll fry mushrooms in fish sauce.  And if there was a nutrient I was missing that’s most easily found in animals, I would have no problem supplementing with an animal product to get that nutrient.  

Also, I do like my food to taste good.  I always make sure that the soup (what I call the resulting liquid that happens after you put all these ingredients in water in a high-powered blender and then strain the results through a chinois) is seasoned in a way where I’d want to eat it even if I was eating it by mouth.  Bonus points if I can convince people with functioning stomachs to eat it on purpose.

I swear that matters.  It matters that the food smells and tastes good, even if I never smell and taste it beyond the taste test at the beginning.  I don’t know if that has any medical benefit, but you don’t just eat food for the medical benefits.  You eat food because you like it.  And making my food enjoyable really frigging matters.  It matters for both disabled and nondisabled people:  You should like what you eat, when possible.  And that shouldn’t have to change just because you’re fed through a tube.

“Food is not just physical or medical.  It’s emotional and cultural and lots of other things.  You ignore that at your peril.”

One thing that I really hate about being tube-fed is the fact that my food is treated as a medicine and eating is completely medicalized.  The Nutren is listed in my medical file as medication, not food.  Regulations state that I  need a note from my doctor to allow Howard Center staff to put blenderized food into my feeding tube.  Which has to do with the nurse being able to keep her license — she finds this all as absurd as I do. 

When I’m in the hospital, how I get water or coffee has to be written up by doctors.  If I disagree, I am not technically allowed to, say, vary the timing of water flushes during tube feeds.  I have to argue with a doctor about water because it’s suddenly a medical treatment rather than just drinking water.  And I have no medical reason for fluid restriction, so they don’t even have that excuse.  It’s entirely because the water goes into a tube rather than into my mouth, even though it’s getting to the same place in the end.

Anyway, one of the biggest antidotes anywhere to seeing food as medicine, is to prepare the food for the blender in the same way you would prepare an actual meal.  You want it to taste good, or smell good.  You want it to be something you’d be willing and even eager to eat if you were eating it orally.  These things aren’t trivial or afterthoughts.  They’re a serious and overlooked part of being tube fed. 

don’t think it’s generally a good idea to ignore this and pretend like your food is a some kind of laboratory experiment.  There’s nothing wrong with eating a feeding formula if that’s what works for you, but if it doesn’t work for you, or you’d just rather for whatever reason use blenderized food?  It’s important where possible that the food be enjoyable and not just a chore you have to get done.  Or at least, that it not be actively unenjoyable.  Food is not just physical or medical.  It’s emotional and cultural and lots of other things.  You ignore that at your peril. 

Anyway, I’m looking forward to my nightly tube feeds instead of dreading them like I used to.  That in itself is a good sign.  In the end it doesn’t entirely matter (except between me and my doctors) why Nutren made me so physically miserable and the food I’m eating now doesn’t.  What matters is that I’m eating food I enjoy and that I seem physically much healthier this way.  And that I’ve found a way to make it work even with a feeding tube.

Posted in Being human, Problems and solutions

Dreams of Robot Kittens

I’m watching a documentary about robots.

And it reminded me of a dream I had a long time ago.

Not a particularly important dream, just a cool dream.

In the dream, I was in a city.  Not sure what city, but a large city.  Kind of sprawling like San Jose, California, where I grew up.  But definitely not San Jose or any other city I’ve been to in real life.

Anyway, in this city, there were robot kittens.

They did not look like this robot cat, which I had as a kid:

petstercat
This is nothing at all like the robot kittens in the dream.  This is an eighties toy that moved, purred, or meowed if you clapped in different patterns.  One of the motors on mine didn’t work so it mostly went around in circles.  I guess I had a disabled robot cat.  I was quite fond of it.

Anyway, the kittens in the dream:  They were tiny.  They were clearly robots, they made no attempt at being realistic.  So they were usually shiny, plastic, and a combination of white and some other color.  (Sometimes a color a cat would be, sometimes something like blue or purple.)  They were also completely adorable.

They didn’t look quite like this, but these modern toys are much closer to what was in the dream than my Petster:

A pink and white plastic robot kitten.
Pink and white plastic robot kitten. Doesn’t look quite like what was in the dream, but much closer tan my old Petster.

Anyway, these robot kittens made their way around the city without really being noticed by a lot of people.  People expected them and got out of their way, but they did a pretty good job of staying out of poeple’s way.

Except the person they were going to.

Because these were delivery kittens.

And each kitten delivered a small amount of food to someone who needed food right then.

And it could be that you had no other source of food.

But it could also just be that you wanted convenient food delivered to you quickly.

Or that you couldn’t be bothered to cook right then.

Or that you were disabled and found cooking and meal planning and all that too difficult.

The kitten delivery service didn’t care why you needed food, they’d just give you food.

The kitten would find you, open up a hatch on its side, and there would be your food.

And then once the kitten was assured you’d gotten your food, it would go on its way back to wherever the delivery kittens go when they’re not out delivering food.

See, in this city, and presumably in the surrounding culture, food was considered a human right.  Everyone took this as a given.  That’s one reason they didn’t differentiate between why a person wanted the kitten delivery service.  The kitten delivery service was completely subsidized and it was anyone’s right to use it for any reason at any time.

Imagine that.  Food being considered a human right.  And being delivered discreetly to anyone who wants it for any reason, by a small army of robotic delivery-kittens.

Holy crap, the world we live in…

 

 

Posted in Being human, family

“Bet your ass we’re paranoid!”

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Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

I grew up on stories of a great-grandma who slept with a hatchet under her pillow.

She was afraid the sheriff was coming for her, you see.  This was supposed to confirm she was crazy.

Maybe she was crazy.  I don’t know.  But the thing is, the sheriff did come for her.

And he took her to the state mental institution.

And she eventually died there.

So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.

Society treats institutionalization as the inevitable result of disability.  It’s not.  It’s a widespread, ongoing crime against humanity.  Just because it’s socially acceptable doesn’t make any less of one.

Posted in Being human, cats, language

I used to volunteer to socialize with the cats at the local shelter.

I loved just sitting in a room with them.

We didn’t need to play.

We sat.

Little messages passed between us barely seen by most people.

The flick of an ear.  A tail.  An eye.  Just for a second.  The posture we sat in.  The direction we were pointed.  It all meant something.

I don’t pretend to have grasped all the communication going on in that room.  Some was by smell, or otherwise inaccessible to the average human, or any human.  Some was cat things only cats know.

But you could get a feel for things.

Sometimes.  Like right now.  Right exactly now.  I wish that I could show things indirectly, with ear and tail and whisker and eye movements, and be understood.

Sometimes.  Like right now.  I know where my ears would be if I was a cat.  (Cat ear muscles and human ear muscles — same muscles, very different ear positions.  :-/   Doesn’t translate well across species lines.)

But as much as I know I am not a cat, I sometimes feel a lot like a cat, sitting in a room with cats, my best communication being in Cat, and feeling helpless to do it in Human.   😦

This applies right now.  This also applies a hell of a lot of the time.

Photo on 8-27-18 at 12.36 AM
No ears, no whiskers, no tail, limits communication greatly.