Posted in language, medical

Favorite disability slang ever, maybe?

So I didn’t used to be. But I’ve been reliably informed by someone with severe scoliosis that the proper slang disability term for people with weird spinal curvature is twisted sister.

I love it.

It doesn’t make up for what osteoporosis has done to my back1. But almost? Maybe.

Mel standing in profile with walker next to bed.

1 It’s kind of done a number on things. My bone density is off-the-charts low. As in, they told me my hips were equivalent to about 95 years old, so I asked about my spine and they said they didn’t have a chart that went that high but that they’d guess it might be a normal density for a 115-year-old. So I’ve got a huge loss in bone density and a bunch of degenerative changes that go with that. Including two stress fractures around T8 and T11 vertebrae. And as a result of some combination of those things I now have kyphosis (the kind of forward curve sometimes known as “hunchback”) and possibly some other weird curvature. And then my neck is straight where it’s supposed to be curved.

All of this is pretty standard for severe osteoporosis, the only thing particularly odd about it is that I’ve got this going on at the age of 39. Which is because of the steroids I have to take and the fact that Howard made me do everything with my spine that you are not supposed to do with the spine of someone with osteoporosis. And continues to make those demands.

I don’t mind how any of this looks. But it can get excruciatingly painful. which is why having a cool word for it doesn’t quite make up for everything. Not quite. But I do love that someone somewhere decided this was the word for unusual spinal curvature.

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 Developmental disability, HCBS

Enjoying something doesn’t make it okay.

Nor does it make it okay to hurt someone because they enjoy what they’re getting to do while you’re hurting them.  (Note:  Throughout this post, remember that anything that happens to me is happening to other people, and that’s one of the reasons I write about these things.  And as usual I’m not asking for anything that any other client doesn’t deserve as well.)

I had a recent and very surreal meeting with some people from Howard Center.

One of the many surreal moments came when Lauratried to bring up the issue of medical neglect within the recreational services I was getting.  I was part of a community garden.  I needed help maintaining my plot.  I could do some things but not others.  Anyway, they basicaally made me do things a person with severe osteoporosis and autonomic dysfunction should never be made to do, with regards to bending, lifting, and heat exhaustion.

The woman from Howard’s response was a bewildered “But I thought Mel liked gardening.”

Yeah.  I like gardening.  I don’t like bending clear to the ground with a stress fracture in my vertebra and recently healed rib fractures all over the place.  Nor do I like not being able to take breaks to avoid heat exhaustion without all assistance with the garden stopping for the day.

And yeah I actually did enjoy getting on the ground and getting my hands in the ground and all that.  Even when it was bad for me.

It doesn’t mean that what they did to my body was okay.

cropped-512-gardening-02.jpg

That is a picture of me doing something I loved doing and was proud of.

That is also a picture of me being forced to do something in a way that was physically dangerous to me.

These things are not contradictory.

In fact, it’s very common in human services for them to go hand in hand like this.

The fact that I enjoyed gardening doesn’t make it okay for them to insist that I garden in a way that’s unsafe2 for me or get no chance to garden at all.

Actually, the fact that I enjoy it makes it worse that they did this.

Because they can use what you enjoy in order to get you to do things the way they want you to do them.  Even at the risk of great harm to yourself.  Because you’re way more likely to agree to do something like this if you enjoy the activity in question.

So.  No.  My enjoying it doesn’t make what happened okay.  It makes it worse, if anything.  You shouldn’t have to risk broken bones and heat exhaustion to get any chance at all do things you like doing.  But that was the choice I was given.  And it’s not okay.  It’s far from okay.

Real Social Skills has a good post on a related topic (which I can say from experience with behavior mod, is true even when you do enjoy it, it can still be harmful):  Appearing To Enjoy Behavior Modification Is Not Meaningful


1 Laura is:

  • My durable power of attorney for healthcare
  • Frequently my cognitive interpreter at meetings
  • Someone who helps me advocate for myself and is much more effective at it than I am
  • My ‘second mother’ (and eventually will legally adopt me), has served in a semi-parental role since I was 17.  (Doesn’t replace my parents, but has helped them out a lot.)

So she’s there at a lot of important meetings.  One of the most important things she does for me is cognitive interpreting:  She helps me understand what other people are talking about, and helps them understand me even at times when I’m unable to get language across.  This is a form of interpreting that most people don’t even know exists.  Sometimes also called English-to-English interpreting when it happens in English.

The fun part is when she says what I’m thinking, I verify that she’s indeed said what I’m thinking, and she’s told that she couldn’t possibly know what I was thinking because the other person couldn’t tell what I was thinking.  If the other person could tell that well what I was thinking, I probably wouldn’t need a cognitive interpreter so badly.

2 Because people seem to use ‘unsafe’ to mean anything from dangerous to uncomfortable these days, let me clarify that I mean dangerous.  Heat exhaustion is dangerous, especially when you have autonomic dysfunction.  Broken bones are dangerous.  Broken bones when you have adrenal insufficiency are especially dangerous.  This wasn’t subtle.