My DPOA/2nd mom just discovered the following situation.
So, I was in the hospital for awhile. I had low sodium (partially related to leakage from a couple of feeding tube sites) and two stress fractures in my spine. I was there a long time. They messed with a bunch of my meds. I let them. I figured the hospital was as safe a place as any to do it. I don’t like being on all these meds. And I know that some of the meds that treat symptoms of one of my conditions actually make the condition itself worse, so it’s a tradeoff and I understand why they’re careful.
But I was sure it was just an innocent mistake when I found out that Reglan had been dropped at some point from my list of medications.
Reglan is the only medication FDA-approved specifically for treating the underlying problem in gastroparesis. Gastroparesis means your stomach is partly paralyzed (probably due to neuropathy of the vagus nerve) and empties too slowly. Mine empties so dangerously slowly that I can’t get enough food without bypassing my stomach, and aspirate stomach contents even in an “empty” stomach because the fluid build sup and backs up into my lungs. That means two feeding tubes, one to drain my stomach, one to go straight into my intestines and avoid my stomach. I’ve got a third hole where a feeding tube used to be that got wrapped around my intestine and had to get pulled. It’s the old unclosed hole and the new feeding tube hole that leak too much. Not leak normally for a feeding tube, but leak so much it can get dangerous to me. This is partly due to long-term medical mismanagement even according to medical professionals who’ve discussed it with me.
Anyway, whenever I come in with excessive leakage, they decide they have to prove that they’ve done something about the leakage, and that they know what they’ve done.
Even if nothing changes.
Or even if they’re completely making things up.
So when I was in the hospital, I was getting several different lines of bullshit about why my hole wasn’t closing and why leakage was happening. I eventually got out of them that they flat-out didn’t know.
They seemed very all or nothing. I encouraged them to think about little things — that even having the support to eat by feeding pump (slow) rather than bolus feeding (stuffing things in with a syringe, bad idea with a J-tube because intestines don’t expand to hold food the way your stomach does), changes the amount of leakage I get. I said anything that either changes the leakage or changes the reaction of my skin to the leakage is an advantage even if it’s tiny.
So the things that really seemed to help, were differences in bolus-feeding habits, getting my meds on time and reliably (which itself requires it to leak little enough that meds don’t leak out again), and differences in skin protection care around the stoma sites.
But… we find out all these months after I get out of the hospital, that:
- I’m not on Reglan/metaclopramide, and nobody told me or my DPOA or anyone else why I was taken off of it.
- They are now claiming that pulling me off Reglan “stopped the leakage”.
- The instructions in my chart read that if I am to “leak again”, I need to stop the Reglan.
In the time since the Reglan, I have struggled to eat anything at all, lost a lot of weight again (I know I don’t look it, but I’m on steroids, so…) struggled to keep up my electrolytes, and a lot of it because my guts are moving too slowly.
Reglan is the only thing in America I can take to make my guts move faster. Erythromycin doesn’t work (and wouldn’t likely work for my kind of gastroparesis, given that it works best for certain causes I definitely don’t have). Domperidone is not FDA-approved here even though I would love to be on it because I can only take a half-dose of Reglan due to motor side effects at full dose. (Domperidone doesn’t cross the blood-brain barrier but has cardiac effects. But in a disease with so few treatments it seems horrible not to allow it. The only other option is a surgery that’s itself dangerous and that I’m ineligible for.)
Reglan doesn’t just treat nausea or reduce acid like the other meds I take for gastroparesis-related problems. It actually makes my guts move faster. Given that my esophagus, stomach, and large intestine have all showed slowed rate at various times throughout my life, that’s kind of a big deal. The only part that’s never been slow is my small intestine, which I consider myself very lucky for. If you want one part of your guts working right, that’s the part you want working, because it’s where the food is absorbed the most.
So it’s a huge deal to take me off the one thing that might be speeding up all the slow parts of my guts.
And it’s an even huger deal to take me off it on the basis of something they have absolutely no proof of.
If they could prove that changes in Reglan, and Reglan in particular, changed the leakage, I would listen to them.
If they could prove Reglan was doing more harm than good, I’d listen to them.
But like usual, they didn’t even tell me, didn’t even ask me.It was a struggle in the hospital to even tell them how bad the leakage was. Because they kept insisting they could tell by the number of dressing changes the nurses did. When we heard that, the nurses and I both laughed, many times — we didn’t know how else to respond. We knew full well that the number of dressing changes was more connected to how many nurses were available than how many times the dressing needed to be changed. My tube leaked, and leaks, continuously. It pretty much never stops. You could change the dressings all day and not change them enough, many days. So instead we found ways to protect the skin — the ostomy nurses were great at this — so that even if it leaked, it was less likely to burn and do damage. Because bile and digestive juices on your skin just eats your skin, and that causes as much pain, chemical burns, and blisters as you might imagine. This is my skin on a good day:
Adding Reglan has not increased my leakage.
But the moment my leakage increases again — it changes in how much it leaks, but it always leaks way too much compared to how a tube should leak — they’re likely to blame the Reglan no matter what happens.
Because it matters more that they “solved the problem”.
Just like last August they “solved the problem” by upsizing (increasing the size of my feeding tube). Even though:
- The problem had started resolving a little before the upsizing
- Upsizing is known as only a temporary solution to these problems at best
- Upsizing did not stop the leaking
- I have been complaining about the leaking, as have my home nurses, ever since the hospital stay while they upsized, and heard nothing back until this hospital stay pretty much.
- The upsizing was my idea and connected mostly to the fact that the tube I needed was only available in the next size p and my last tube had broken. By my idea, I mean the doctors had to get all stern and go away and Talk Amongst Themselves about it to see if they thought I was right before they’d do it, even though I’m supposed to be able to request my own preferred and usual type of tube after that point in time.
- They were so confused about what was going on at the time, that they tried to stick a tube of the completely wrong size in the completely wrong hole until I shouted to stop them.
- It was my idea and a “bad idea” until they’d approved it.
- At which point it was their idea all along and it “worked”.
So last year sometime, something similar happened. They had to prove they’d Done Something About The Problem even though they didn’t really want to do anything at all :(the whole hospital stay was itself because they were fighting over whether anyone had to treat me, and who that would be if so). So they came up with the idea that the normal ebbs and flows of my leakage were tied to “their” idea of upsizing my tube. (And my tube was only upsized because the old one had started falling to pieces., it wasn’t originally intended to have anything to do with leakage. MIC-KEY J-tubes just don’t come in that smaller size, and the smaller size was very clog-prone and yucky.)
Anyway… so they did this. They said “Upsizing fixed it” even though “it” was never “fixed” at all. They took credit for an idea that wasn’t theirs — and I wasn’t fussy at the time as long as I got the right tube in the end. (I still have the same type of tube, which lasted a year before part of it started falling apart. Which is really good for a feeding tube.)
Later on they told me that by upsizing then ignoring it this long they might’ve created an impossible problem for me. That it might be too late now because they’d pretended everything was okay for so long that there might be damage done they can’t undo in several respects. If that’s true, then why do this again….
But that’s what they’ve done.
They’ve claimed the leakage stopped. It never stopped. I’ve been having continuous leak problems for a long time.
And they’ve claimed they know what “stopped” it — one medication among at least half a dozen they were manipulating all at once.
And now if I continue to have the problem that never stopped, they’re gonna blame something that I was still leaking, and leaking badly, when I wasn’t taking it.
And the thing is…
I need many nausea meds.
I was taken off several and I know why and it makes sense– they actually slow down stomach emptying even if they make me feel better. If I can live without them I want to.
But Reglan isn’t like that, it actually speeds up stomach emptying.
Phenergan and Dronabinol are my main nausea meds. They’re the ones that sort of hold things steady with my long-term nausea and keep me out of the hospital.
Zofran is a third, one that I take when there’s severe but short-term nausea. I don’t like to take it because it gives me headaches. But it works when it works, and I do take it sometimes.
I’ve been having so much nausea from small volumes of food in my intestines that I have had trouble eating a full meal. Right now I’m eating meals that may not be as good nutritionally as what I’d eat, but are easier to digest. Same thing you’d do if you were feeling sick and you ate by mouth. I just forgot to do the same thing by tube feed. So my roommate started making me sick food. It’s working, i’m getting food, and I’m working hard at eating. And it is hard work to get even a normal amount of food down. I have trouble getting a full 1000 mL a day. I’ve been anemic and protein-deficient and had problems with my electrolytes. I’ve had another hospital stay, I think, although I can’t remember what happened.
And all this time I had no idea they’d pulled my Reglan, let alone on purpose.
Let alone that they’re not being honest about what’s going on there.
Because it’s dishonest, on some level, to claim to have solved a problem that’s still there. Especially when you did a zillion things at once and you’re just picking one of them out of thin air to promote as the One That Worked.
And my GP is out of town, that’s part of how things have gotten completely out of whack. He has a good sub working for him, but I really need to talk to him in some way that isn’t third-hand on the phone. He doesn’t even know (nor do any of you, to my knowledge, because I haven’t been writing about it) what the latest med disaster has been or why, but had to do a whole lot of work to fix it by phone.
And like… I know that my horrible sense of time contributed to the med disaster.
But so have a long string of errors, oversights, wishful thinking, lying, and assorted weirdness from medical professionals. Not to mention neglect from the people who are supposed to be helping me manage my meds. The weird kind of neglect where they at the same time try to claim “We’re so worried you’ll hurt yourself getting your meds wrong” but they get your meds wronger than you do and don’t even notice.
At any rate, my meds got screwed up recently because my sense of time is much, much, much more deeply weird than I understood it to be, and I’ve been ignoring the degree to which epilepsy has affected everything about my life. And I ended up on a weird free-running med schedule where I ended up taking too much of half my meds and too little of the other half, pretty much. Not on purpose but because I can’t track time and was relying on other factors to track my meds. And because I was being expected to do my own meds, when that had been told to me as “You’ll only need this for emergencies.”
But seriously guys?
Don’t claim you’ve solved problems you haven’t solved. I’m sure it makes you look great on paper. I’m sure it limits some kind of liability or helps with insurance in some way or some crap like that. But it does me no good when you do it at the expense of my health.
And it says something that I didn’t notice I wasn’t taking one of my most important meds, even when I couldn’t eat.
And just… can I please just have the support I need to live in the body I’ve got, and not all this other crap I don’t need or want, combined with total neglect of everything I do need?
Because the rest of these many variations on medical neglect are getting old.
And mind you there’s lots of medical professionals who do care about getting it right, and nobody can get it right all the time even so. But there’s so many who don’t care, or who care more about other things than they care about this.
And they shouldn’t care more about proving “I solved this” than about whether their “solution” is just some random crap they did that actually hurt me more than it helped, and where the “lack of leakage” didn’t even happen.
(A lot of this was taking place when the hospital was trying to declare me a non-medical patient in order to discharge me early because they couldn’t find a rehab, among many other convoluted reasons. So I was dealing with things like oxygen sats of everything from the 80s all the way down to 75, where they had technicians come in and test multiple machines and multiple finger probes on me, all trying to show that the readings were wrong, but the readings were consistent the entire time. Because they didn’t want anything to be medically wrong, so even when they had solid proof something was up they’d ignore it when possible. So of course they could imagine “leakage stopping” as a thing, even as they were telling me out loud that the leakage would never stop and had not stopped.)
Yes, i’m writing about this for a reason: If it’s happening to me, it’s happening to others, and it’s bad and dangerous as a way to do medical care. I don’t know which people figured the leakage stopped — often it’s a game of telephone among people who never physically examine me or talk to me directly, but all discuss things with each other — but someone claimed it did and someone claimed it was the Reglan and I’ve been paying the consequences without knowing it.
I’m sick of me and my family getting the consequences for everyone else’s mistakes.
It keeps happening.
Nobody’s held accountable.
And the only punishment is on me and anyone trying to take care of me. And to be clear, there’ve been a lot of great people involved. Just not enough with enough power and knowledge, to get the right things done. (Quite often I notice the nurses pick up on something being way wrong but have to be subordinate to doctors. Which weirds me out because nursing and doctoring strike me as two separate types of medicine, rather than one type that’s “supposed to” call the shots and the other that’s “supposed to” listen. But what do I know, I’m just a patient.)
Nausea is getting old. Hunger combined with disinterest in food is getting old. And I have meds to manage these things with, but the threat of having the ones that work taken away for someone else’s wish fulfillment purposes is really getting old. Reglans’ close to all we’ve got in America and taking it away from someone with gastroparesis ought to require more proof than that. Including proof that the problem ever actually resolved itself. Which it didn’t. (Which we know because there’s a nurse in my home every single day to check my skin and leakage. There’s plenty of documentation that the leakage has gone nowhere.)
Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.
One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.
I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.
Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.
Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.
Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.
It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.
There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.
So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.
I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.
I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.
If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.
I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.
Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.
I’ve been living in this body for a long time. I have:
- Severe osteoporosis
- Stress fractures of vertebrae
- Healed hip stress fracture
- Congenital myasthenic syndrome
- Autistic catatonia
- Severe adrenal insufficiency
- Feeding tubes
- Many other things
It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.
If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.
I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.
Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.
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.
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.
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 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.
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.
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.
The most common treatments for a thoracic compression fracture are: pain medications, decreasing activity, and bracing. In rare cases, surgery may also be necessary.
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
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!
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 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.
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.
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.
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
-University of Maryland Medical Center, Thoracic Compression Fractures
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.
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.
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.
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 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.
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.
So I’ve been struggling to keep my potassium at normal levels even with supplements. I’m losing fluid continuously out a hole that has to wait a long time to close naturally. Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that. Even after the antibiotics stopped, still losing lots of fluids, still going alkaline. (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)
So my potassium was going low and staying low. Not as low as it’s been in the past. No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization. But low potassium is too low potassium, and even with supplements it wasn’t staying up.
The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds. She thought this is great. (She seemed thrilled to have a patient whose main food craving is vegetables. She must not get that a lot.) Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting. She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt. I’d never heard of kombucha but it is easier to digest and it smells good.
And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!
So I go in there and the highest-potassium food in the cafeteria is coconut water. Which comes in the most ridiculous hippie-oriented packaging. So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list. But mostly coconut water because it has the highest potassium.
And it works, my potassium is up.
But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:
But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here. So the hippie food works!
So I guess I will be eating lot of hippie food for a while. If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.
But the hippie food… wow. My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up. She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness. (She gets very elaborate with her teasing but it’s all friendly.)
But in this case the hippie food is working, so I’ll put up with any jokes. I find it kind of funny myself.
SERIOUSLY look at the packaging on that coconut water…
Not all of my thoughts on death and mortality are purely personal. Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself. And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.
If you are disabled. If you are cognitively disabled. If you are developmentally disabled. There are people who literally do not care one way or the other if you live or die. And there are people who actually kind of wish you’d die — some more fervently than others. And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability). And to be unaware of this is to be unaware of serious danger.
These people can work in the medical profession. Many do.
These people can work in agencies that are supposed to give you support. Many do.
These people can work in any major position of power over you. Many do.
And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways. I’m talking about people who mostly think of themselves as kind of normal.
But they can still kill you with apathy, indifference, and even varying degrees of malice.
My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now. They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.
This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.
This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.
But they know. Perfectly well. That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting. (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat. Long story. But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.) And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital. They knew all this.
Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.
They know, in detail, that this is not possible for me. They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis. They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.
They know these things.
So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.
The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.
But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.
When I say I accept death, it does not mean I accept THIS. This isn’t death that just happens. This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from. But people have warned me about it just before this happened. And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.
So this is happening. Now. I am in the hospital. And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing. Which makes the “Sorry you’re in the hospital” part feel completely phony.
I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon. But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.
And I can’t stress how much someone at some level is perfectly aware what this means that they are asking this of me just now.
And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die. Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you. Ever.
And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are. They may be someone you never meet directly. But people who explicitly range from apathetic to malicious abour your continued existence are out there. And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.
So you can’t always just point to an Umbridge. Even if there’s an Umbridge, or a small army of Umbridges. (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)
And for the record, accepting death as a whole does not mean I accept this kind of death for an instant. If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway. And there’s a huge difference. And I hope I don’t have to explain that difference to anyone. I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost. If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive). But you get the idea.
Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.
I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.
Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.
I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.
The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.
If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.
I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.
But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.
Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.
And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.
It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.
But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.
Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.
And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.
I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.
Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.
Bear in mind, I remain firmly convinced that the ninth circle of hell is located somewhere in Fletcher Allen Hospital. Or maybe hospitals in general. And I don’t even believe in hell. There’s a lot of great people working there, and I encountered many of them this time — including lots of nurses wearing bright red pins saying “WE’RE WINNING” — but a hospital is a hospital.
And I was stuck in a room I’d previously been massively delirious in towards the end of a five-week stay from hell. This room:
I was forgetting things. Things like the redwoods. I knew they existed but I couldn’t remember them. I was forgetting who I was. Large chunks of my normal thinking were falling out. And I couldn’t fucking remember the redwoods. I knew I should know them, but I didn’t, and it frightened me.
It reminded me too much of the blank delirium. The kind where white blankness fills up more and more of the world until the world goes away, and you’re lost in the snow. I didn’t want to be lost in the snow.
So I was looking out the window one day and I saw this:
There was a child running and playing down there. I wondered how the hell you get down there.
A wonderful LNA — i’d name her, but I don’t want to invade her privacy — made it her personal mission to figure out how to get down there. I heard her asking around all day. She finally came in with a post-it with written instructions on how to get down there. It involved a lot of weird back routes. They don’t make it simple. The hospital is actually several unrelated buildings kludged together by a maze of corridors, with that unexpected garden in the middle of it all. I’ve explored a lot of the corridors, but I’ve never found the entrance to the garden.
Anyway, when my evening caregiver arrived to visit, the LNA and I were ready with a wheelchair to get me down there. She went over the instructions with him, and he pushed me down. We found it pretty easily, she gave good directions. I’d actually been very close to the entrance before, and never known it.
It turns out it’s this place called Peter’s Garden. It didn’t take much thinking it out to know that Peter must be someone who died.
You can read more about Peter and the garden here, it includes a link to a Powerpoint of the construction of the garden. From what I understand, he died in his forties of cancer and his family and friends raised the money to put the garden in. I heard later that the chemo ward overlooks the garden directly.
Anyway, I got up and walked around a little.
When my feet touched living soil, I could remember the redwoods. I could feel my body. I could remember who I was. I could feel the way things connect together again.
I still have big holes.
I still have gaps in my head that didn’t used to be there.
But something happened in my soul.
In the middle of that hell place, there’s life. There’s dirt. There’s plants. There’s beauty. There’s dead plants. There’s amazing flowers. There’s REAL.
Someone put it there, someone made it this way on purpose.
I’m really grateful to whoever decided to do that. And to the LNA who made sure I could get down there when I was losing touch with everything that mattered to me. It gave me back a lot of strength in a really scary situation. It got me through a night where every time I closed my eyes I thought a bunch of black blobs were coming to eat me. It got me through a tense, scary morning with an uncertain future.
The gaps are still there, the tenuousness of my health is still there especially now that I’m out of the hospital, the uncertainty is still there, and I’m not working with all the thinking I should need to survive what’s in store. But I can feel who I am, where I come from, and that can mean the world.
I was in the hospital for a month recently. I was able to see the conditions that nurses were working under. It was bad. I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized: Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things. This has been prolonged and their signs are now all over town.
Earlier this month, Seven Days VT published an article called Nurses, UVM Medical Center Remain At Odds Over Contract which said:
Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.
Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.
I hope they meet all of their goals. The conditions they’re expected to work under are ridiculous. They are right: This is a safety issue, both for nurses and for patients. I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do. All the ones I saw were trying very hard to help all their patients, and couldn’t. One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy. Watching her, I believe it.
And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin. Which results in things like not noticing I take seizure medications. Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it. Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff. Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll. Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.
Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.
Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing. The nurses I met this stay were almost all amazing, dedicated, and trying their hardest. But without enough of them, without the resources to do their jobs, that’s just not enough.
I really, really hope their negotiations succeed.