‘Because the man in question has helped me a good deal. We have a decent relationship and he is amazingly helpful and has sent me things that may well be the only things keeping alive. Nothing is simple in this world. Remember my grandfather’s fiddle. Only this man is not as bad as my grandfather, not by far. He has learned his errors. It is possible. And that is important. People think it’s not possible and they give the perpetrator no chance of redemption. That helps nobody. There are people who are beyond hope but in my case that is not true. But I have to talk about this. It is awkward because he just helped me a lot. But it is true regardless. So I have to say what I have to say, to bear witness to something most people refuse to acknowledge, and I have been putting this off far too long. Understand this post is not to punish the perpetrator, it is to explain what is possible, some things that most people do not think of.
So. I will call him John to be as anonymous as possible even though some of you know who he is.
I was molested from at least the ages of 11 to 15 by John. I have been hurt by other men, including something i am now told as rape (someone put his toes up my butt) but John did the worst damage.
It is easy to tell you how John threatened to butt-rape me. How he rubbed his penis on my butt. How he did sexual things to me that I was entirely unaware of at the time (Lolita has some scenes that explained to me how that is possible). I told him “Oh that is okay” and he very guiltily said “No, no, that is worse.” He feels remorse and went to therapy and tried to learn. He doesn’t even date now. These are facts. They are not the whole story but they are facts.
Anyway, so, the thing is, everyone things that child molesters are all pedophiles. That is, that they have a sexual orientation that gives them an irresistible attraction to children that they have trouble not acting on. But the most important message in this post is that this is not true.
So what is true?
I was molested because John was a misogynist, a big-time misogynist.
Most important message in the post.
The term incel didn’t exist back then. I know the history of the word, that it wasn’t always bad, that a woman invented it. But it has come to mean exactly what John was.
It matters that I am a woman. It doesn’t matter my inside gender. It matters that I am a woman, as in I belong to the class of people known as women, and misogyny is the hatred of that class of people. And that doesn’t change. And yes trans women are also women, I am not denying that. But I am also a woman and I can’t deny that. And I mean for the purposes of who is subject to misogyny. Or transmisogyny. Any kind of misogyny, and you are a woman for all practical purposes.
John set a date by which he would marry.
It didn’t happen.
He picked a woman to marry.
She didn’t want him.
He could not accept this.
He tried to date a string of women, unsuccessfully.
John felt entitled to own women’s bodies. And use them however he wanted. And it made him angry when women would not do what we were told. Very angry. Very bitter. Very cruel. He threatened to threaten suicide to force a woman to have sex with him.
So the damage he did to me was not so much the things I listed above.
The damage he did was that he taught me all about women and he taught me all wrong.
He taught me to hate myself.
He taught me it was all right for men to treat women like things.
He taught me sexism and misogyny.
Those have stuck in my head longer than anything else he did. I am still disentangling them like the worst of my yarn monster.
But I asked him. I asked him why. I asked him why he did it.
And John said to get back at the world.
For not automagically giving him a wife when he felt entitled to a wife.
I was the smallest and most vulnerable girl he could get his hands on. Or his dick on.
And I had nightmares about him and back then people thought all nightmares about abuse were abuse flashbacks and 100% real. So I believed in the nightmares, I believed he anally raped me. My only anal rape came later in a psych ward. And involved feet, not penises.
This was the nineties which explains the confusion.
Anyway, for John, this was a power thing, he had power over me, and he used it.
He was not a pedophile.
He was a raging misogynist and what these days they call an incel.
The most important thing is his sense of entitlement to the bodies of women no matter what. And the rage tantrum he threw when he could not get his way with women his age. I was the target for all his rage and fear and disappointment and especially, especially, misogyny.
Which is one reason I need the word woman for myself no matter what else I feel. I can’t escape it. Do you think that little girl who survived being shot in the head, for trying to go to school, would have been shot any less if she was secretly a trans boy? Because she wouldn’t. She was a girl for all practical purposes and sometimes practical purposes are all that count. I am sorry that I don’t remember her name. I am still a little delirious from the hospital.
But I remember something like this:
I do not tell my story because it is unique. I tell my story because it is not unique.
Let me see if I can look up her name. That is from her Nobel Prize speech.
Anyway, she would be facing misogyny no matter whether she is really a man, woman, both, neither, some combination, whatever her gender identity is. For the purposes of misogyny you only need one way to be female, and there are many.
And the same is true of me.
John did not hurt me because he was a pedophile. He hurt me because he felt entitled to women’s bodies and I was a girl he had near total control over.
John, i know you will read this. I didn‘t want to write it in some ways, especially after all you helped me. But I think you, if no one else, will understan why I had to tell people the truth. I’ve been afraid to for far too long. I’ve been afraid. Of what will come raining down on me from family for writing this, of how you might feel after all this time.
But I also know that you take responsibility for your actions as much as you can. And you take what you did seriously. And if anyone is going to understand why I had to say this, it is going to be you. And you know, you know in your bones, like I know in my bones, that if you didn’t want anyone even anonymously telling why you molested a child, you shouldn’t have molested a child in the first place.
Because that is what I was. A child. And you hurt me. And you shouldn’t have. And you filled my head with the worst of misogynist nonsense. You learned. But you hurt me. You hurt me. And not just with your dick. Not even mainly with your dick. Your words and ideas hurt me the worst.
Your misogyny hurt me the worst. And your misogyny, not pedophilia, fueled the whole thing. And everyone needs to know that. For their own safety. Which is why I wrote this. For the safety of other people. Not to “call out” John, but to inform everyone that there are more than one reason for child molestation.
Also, thank you for changing. Thank you for the help. Thank you for getting help. Thank you for taking as much responsibility as you can. Thank you for having a conscience, that puts you leaps and bounds ahead of my grandpa. None of this excuses what you did, and you know that. But thank you for knowing there are exceptions.
And I am not telling anyone else how to feel about their molester. I am not telling anyone to forgive. I am not telling anyone how to feel. I am telling you how i feel. to the best of my ability. That is all. For now. I am sorry, I do not mean to air dirty laundry, but this is too important not to talk about.
I tell my story not because it is unique, but because it is not. Paraphrase, Malala Yousafzai.
I tell my story not because is unique, but because it is not.
Some people take this as meaning that God will take care of everything and we have to do nothing. My take on it is that we have been handed this one fragile little place, that we wholly rely on, and that we need to take care of forever or we are in deep trouble. Then I ran across this, in a context that gave it a very similar meaning:
The Sun Of Life is a tarot card I ran across as the most important card in a situation involving the way the world is right now. The card depicts the idea that everything important in life, humans get from sunlight and love associated with sunlight. It reminds me of my need for fire in order to be alive, but even more so reminds me of Julian’s vision. It’s a picture of so much of what we have to lose, and how important it is not to lose those things. Also the artwork is beautiful2.
1 I am neither Christian nor neopagan, but I respect both of these and other forms of religion and spirituality. That respect means that I ask others to respect other people’s belief or lack of belief (atheists and agnostics welcome. too). You don’t have to agree with me or anyone else, just please be nice to people.
2 Wildwood Tarot deck. Mark Ryan and John Matthews, card illustrations by Will Worthington.
Julian of Norwich
was a medieval anchoress, a woman’s version of a hermit nun in Catholicism in those times. An anchoress would obtain her last rites and then be walled up in an anchorhold which was usually part of the church. She would have had both rules and freedoms that other nuns did not have. She stayed in the anchorhold until her death. Julian also happens to be the first woman to write and publish a book in the Engilsh language. Her Revelations of Divine Love, or Showings, detailing her spiritual experiences and how they changed her life. She was sometimes controversial for things like calling Jesus “mother”.
Probably because of this kind of thing, she almost but not quite became a saint in Catholicism, Lutheranism, and Anglicanism. But she is venerated in all of those denominations regardless of sainthood, and has been honored by these versions of Christianity.
Like many mystics, Julian was more concerned with her thoughts on God and theology than on getting personal recognition, so we don’t even know her name. Julian is the name of the church she lived in. Most of what we do know, is guesse based on what was probably going on when she was an anchoress. For many things, including whether she had a cat (anchoresses were advised to “keep no beast save one cat”), are just people’s guesses about her. But her hazelnut vision outlives her, and I seriously hope that everyone remembers we were given this little fragile world to take care of, it’s all we have, and now is the time, not years from now — we are already late but we can mkae a difference still.
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
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.
Something I haven’t been able to say, but is finally possible to say pretty clearly and directly. Here’s a very simplistic way of describing how to tell a good agency from a bad one:
Insert people as staff or management or whatever other jobs there are.
See if they treat their clients better, worse, or the same just by being there.
A good agency will, by the way it’s structured, encourage people to behave with respect, responsibility, and ethics.
A bad agency will do the opposite.
A bad agency will make it so that it requires a great deal of effort to behave like a decent human being even if you’re trying really hard to do so.
A good agency will make it so that the average person will go in and do better than they otherwise would have.
A good agency will make it so that someone going in with malicious intentions will find it hard to act on those intentions or last long within the agency if they manage it.
Put simply: A good agency will make it easy to be good and hard to be bad. A bad agency will make it easy to be bad and hard to be good. Good agencies bring out the best in people, bad agencies bring out the worst in people.
A very good agency will change many people with malicious intentions for the better, through means that are themselves good. A very bad agency will change many people with excellent intentions for the worse, through means that are ethically muddy at best and outright evil at worst.
All of this is simplistically worded. But hopefully you know what I mean. I’ve spent a long time struggling to find words for this. I’m still not there yet. Life is more complicated than a cartoon version of right and wrong. But a good place makes it easy to do the right thing and encourages everyone in that direction, and a bad place does the opposite. Even if it’s never that simple. Which, of course, it isn’t.
But I’m excited that I’m able to even say this much.
Because I’m getting sick of having to add disclaimers to everything I say about HCBS or medical services like “I know there’s good people here, but…” Of course there’s “good people” here. There’s every kind of people everywhere. But that isn’t what makes an agency good or bad. Also, I genuinely don’t believe in the existence of ‘good guys’ and ‘bad guys’ so all of this is an oversimplified way of describing things anyway. But to be able to describe this at all is an enormous relief.
Also, this is one aspect of how agencies operate. This is one aspect of what makes agencies better or worse. And this is a description of a tendency, not something that’s written in stone and never changes.
But it is something.
And I was able to say it.
And given how difficult writing is lately, that feels pretty good. It also feels good to finally be able to say this without practically having to write a novel to do it. I’m tired of having to constantly reassure people that I understand they are often coming in with good intentions, that calling an agency bad is not the same as making everyone who works there ‘bad guys’, or that I don’t even believe in good guys and bad guys in the first place. And never being able to even get to a discussion of what’s happening.
I’m not good at summarizing even at the best of times. But here’s a tl;dr summary to the best of my abilities:
TL;DR: Good agencies make it easy to do good things and hard to do bad things, regardless of what kind of intent and knowledge you come in with. Bad agencies make it easy to do bad things and hard to do good things, regardless of what kind of intent and knowledge you come in with. I’m aware how oversimplified this is, but I have had a lot of trouble writing anything suitable for blogging despite many ideas of things to write. So I have managed to describe one small piece of how to tell if an agency or organization is, generally speaking, a good place or not or somewhere in between. And I’m glad I was able to do that.
“A time may come soon,” said he, “when none may return. Then there will be need of valour without renown, for none shall remember the deeds that are done in the last defence of your homes. Yet the deeds will not be less valiant because they are unpraised.”
J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.
I am taking this quote entirely out of context, because the words valour without renown have been floating around my head a lot in recent years without context, and finding their own context within the world I find myself living in. So don’t expect literary analysis here, nor any take on these words other than my own. Which is both larger and smaller in scope than the original context.
Valour without renown seems on the face of it to be talking about courage — possibly especially battle-courage — without outward recognition, without going down in history, possibly even without a history existing to go down in. And that is one piece of it, one way it can happen. In a broader sense you could talk about courage in general, without praise in general.
But there’s one thing that this keeps distilling itself down to for me, with diamond-like precision and clarity.
It’s doing what is the right thing to do without any reason or incentive other than it being the right thing to do. Not just courage, but any right thing. Not just recognition, but any sort of outward motivation, or any expectation of reward of any kind.
This is both simpler and more complicated than it sounds. The hardest thing you can do but from some perspectives, easier than many of the alternatives. Easy to describe in three words, and impossible to describe even if you had infinite words. Not contradictory at all, yet good at producing sentences like these ones when you try to approach it wielding language.1
It’s also one of the most important things any of us can learn right now.
It’s no secret that the world is extremely messed up at the moment.
And my friends and I, we’ve all been noticing patterns in how it is messed up. Patterns that we have trouble putting into words. My friend’s cat has cancer right now, so maybe it’s for that reason that the word malignant comes to mind so strongly. Or malevolent, or just plain evil. As in, things that feel more like there’s a whole pattern of nasty forms of intent behind them than, say, random forces of nature seem to have, no matter how brutal.
And most of us are at a loss as to not only how to describe such a thing, but what to do about it.
One fortunate thing about the world is how many and varied the things within it are. People alone make up billions of variations on those things, and there’s lots of things in the world besides people. For each one of us, at any given time, there are many good things we can do for the world, and many possible ways to go about doing those things. Some may be better things, and better ways, than others. But which one is the best choice varies based on timing, context, person, and every possible way the situation can vary. Sometimes there are more choices than others, sometimes there seem to be few or no choices, sometimes all the choices have terrible consequences.
But there are always many ways to do the right thing. And each one of us can be a part of doing that. Sometimes it’s something seemingly tiny and insignificant. Sometimes it’s something seemingly huge and obvious. Sometimes it’s both, sometimes neither. And almost always, in any situation, there are many choices.
And telling right from wrong is rarely as easy as stories make it out to be. And very few things are all right or all wrong. And in very few cases do we learn the full consequences of our actions, either at the time or even in hindsight.
But we still should be making the effort. In times like these more than any.
I’ve talked about this before from time to time. Mostly in the context of death. Personal death, death of a culture, death of a species. But death. Destruction. Even the “end of the world,” as most people see it. Situations that seem hopeless. Where it’s tempting to say that trying to do the right thing is pointless.
It’s at those times that doing the right thing may matter more than any other time.
If the way you treat someone right now matters, it matters just as much when you are thinking about the fact that one day both you and the other person will be long dead and nobody living remembers either of you. It may matter even more knowing that. So why is it that when people think of ‘hopeless’ scenarios, they think that what they do doesn’t matter in light of their own death or the extinction of their species or some other large or small catastrophe?
To me, it matters more, it always matters more, knowing we won’t always be around. There’s always a responsibility to other people in the now, even if history as we know it ends tomorrow. There’s always a responsibility to the people and things that come after history as we know it ends.
Because the world is made up of so much more than ourselves alone. And the world functions as all of us acting on each other. Not isolated people or cultures or species floating around as individuals with no effect on the world around us. What we do always matters whether other human beings ever seem to notice or care.
And that’s just one tiny piece of why this ‘valour without renown’ thing matters so much. It’s the part I’ve described the most before, the part I have the easiest time putting into words. And that part isn’t easy to put into words.
One of the most important things we can learn is to be motivated enough that if it ever comes down to it, we can choose to do a very difficult right thing to do, utterly regardless of what reaction the world around us appears to have to it.
Sometimes it’s difficult because it’s something huge and scary. But sometimes it’s difficult because it’s something seemingly small and insignificant when we’d rather make a grand gesture of some kind. Sometimes it’s difficult because there are so many right things to do it’s hard to know which one to choose. Sometimes it’s difficult because it’s hard to tell what the right thing is, or even if there’s anything you can do that’s right enough to do it. Sometimes it’s difficult because it feels like doing nothing, even though refraining from action can be just as significant and important as acting, sometimes. Many things can make it difficult. But everything makes it worthwhile to try.
And trying is the most any of us can promise, I think. We can say we’d do the right thing, but until we’re in the situation, we don’t know what obstacles we’ll be up against, from within and without. We don’t even know if we’ll be aware we’re in that kind of situation at the time.
But we can try.
We can make the effort.
That’s all we can do.
And that’s doing a lot.
But hard times, times that people think of as hopeless, those are the times when we all need to be thinking about how to figure out a right thing we can do, and do it to the best of our ability. Regardless of outward consequences. A lot more depends on that than people sometimes realize.
And that’s actually a good thing.
Believe it or not.
1The Tao Te Ching sums this kind of thing up pretty well:
The bright path seems dim;
Going forward seems like retreat;
The easy way seems hard;
The highest Virtue seems empty;
Great purity seems sullied;
A wealth of Virtue seems inadequate;
The strength of Virtue seems frail,
Real Virtue seems unreal;
The perfect square has no corners;
Great talents ripen late;
The highest notes are hard to hear;
The greatest form has no shape.
Lao Tzu, Tao Te Ching, translated by Gia-Fu Feng & Jane English