Fat people and feeding tubes.

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This isn’t a post I like to write.  The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat.  Except they usually go beyond calling me fat.  They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse.  In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have.  It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions.  They are here to take pot shots at my weight, and to imply that I’m not really sick.

But the thing is, even people who are not bullies have questions like this in their minds sometimes.  And many people who are fat themselves, can be slow in recognizing that they have a disease.  And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has.  So understand when I’m writing this… the bullies didn’t goad me into writing it.  I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.

And because fat people die every single day due to inadequate healthcare:

  • When we get sick it’s recognized less often.
  • We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
  • If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer.  (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
  • If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain.  (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
  • Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.

These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones.  To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.

So here’s the thing:  I have gastroparesis.  That’s a partially paralyzed stomach.  It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system.  It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach.  Mine stayed in my stomach too long, therefore I have gastroparesis.  End of story, there’s no arguing with that.

Symptoms of gastroparesis are a weird thing.  With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is.  Gastroparesis is different.  You can have severe symptoms with fairly mild slowing of the stomach.  You can have very mild symptoms in a stomach that’s almost stopped altogether.  Nobody knows why this is.

Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat),  feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain.  (More on that later.)

I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer.  When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits.  Then I got aspiration pneumonia from the associated reflux.  Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.

Being fat delayed my treatment.

People have this bizarre view that if a person loses weight, they just go from fat to skinny.  They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny.  So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me.  They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster.  Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office.  They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart.  It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat.  Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin.  But it took seeing me failing to eat every day before that knowledge could break through their own biases.

So they embarked on a program to bring my weight up.  Yes, I said bring my weight up.  Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment.  The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight.  That’s not how human physiology works.

They put me on every nausea medication they possibly could.  I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol.  Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube.  They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future.  But they were able to send me home on a diet of Ensure Plus and lots of nausea meds.  It worked for a few months.

But my gastroparesis symptoms only got worse.  They were getting worse in two areas.  One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot.  The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year.  With bronchiectasis to make things even worse, the pneumonia was going to kill me.  Secondly, I was losing weight again.  I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day.  It went down that fast within a couple of weeks.

So they agreed I needed a feeding tube if I were to survive.  They didn’t agree that I should want to survive, but that’s another story I’ve told before.  They did agree that I needed a feeding tube in order to survive.  And eventually I got that feeding tube.

The thing about feeding tubes, for any skeptics out there?  Is that they don’t give them out to people who don’t need them.  Yes, everyone has heard of rich women who diet by using nasogastric tubes.  But this isn’t a nasogastric tube, it’s a GJ tube.  And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid.  Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one.  Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one.  Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.

GJ feeding tube

The above feeding tube?  Only way to get it is because it’s medically necessary.

So why is a feeding tube medically necessary in a fat person?

Because feeding tubes are given for a very wide range of problems.  In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.

1.  I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy.  My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.

2.  I aspirate stomach fluid, which can be drained out of one half of my feeding tube.  Continued aspirations would result in repeated infections until eventual death.

It’s the first one people don’t seem to grasp.

I’ll make it very simple:  You can die from complications of rapid weight loss, before you ever become thin.  You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin.  And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.

Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat.  My body had a lot of problems and I never even made it to thin.

I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss.  My goal should not be weight gain either.  My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there.  Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.

For what it’s worth, right now I weigh 178 pounds.  That is 67 pounds lighter than I weighed when all of this started.  Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem.  That is how every medical professional in my life has treated the matter.

The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures.  Offline, people are constantly asking me about having lost weight.  It’s not subtle.  It’s not even close to subtle.  My clothes hang off of me.  My pants and skirts fall down if I don’t use belts or suspenders.  My entire facial shape has changed.  Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight.  Medical professionals express extreme worry about the amount of weight I’ve lost.  I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.

Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.

I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.

But back to weight and gastroparesis.

Not only is it not true that only thin people get gastroparesis.  Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with.  But gastroparesis can actually cause weight gain.

It works like this:

Gastroparesis causes the amount of calories that you get, to be restricted.

Your body at first loses weight.

Then your body goes into starvation mode.  It notices that there are fewer calories.  So it begins trying to hang onto every single calorie for dear life.

At which point your body gains weight again.

That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.

So “How can you have gastroparesis?  You’re fat!”  Doesn’t work on so many levels.

But this kind of thinking kills fat people who have diseases like this one.  It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough.  It kills fat people in general.  The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease.  And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well.  Every.  Single.  Day.

I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway.  The only food I take in is a nutritional supplement called Osmolite.  It’s pre-mixed to be a certain number of calories a day.  I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500.  There is no other source of food for me.  Any food I don’t eat by the end of the day is poured down the drain.  Literally everything comes through the feeding tube.  So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about.  For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties.  And it’s honestly none of your business.

So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post.   If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.

Because the need for a feeding tube comes most often when someone can’t eat.  When a fat person can’t eat, that is as dangerous as when a thin person can’t eat.  You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency.  And this is why plenty of fat people have feeding tubes.

We may have feeding tubes because we can’t swallow.  We may have feeding tubes because we choke on our food.  We may have feeding tubes to bypass a stomach that doesn’t work.  We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us.  We may have feeding tubes because our esophagus doesn’t work.  We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat.  All of these things are just as serious problems in a fat person as in a thin person.

I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people.  Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight.  You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.

But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube.  And most of those dozens of reasons do not have a weight limit.  So please don’t bully and harass fat people for having feeding tubes.  And if you see someone you know doing the bullying and harassing, set the record straight.  Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason.  And the same is true for anyone else with a G tube, J tube, or GJ tube.  These are serious surgical procedures that are never undertaken lightly.

As for the bullies, I hope I never have to live in a world where they run my medical care.  I can just see them “You lost 70 pounds rapidly without trying?  Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!”  It’s ludicrous.  And deadly.  All of these attitudes contribute to the deaths of fat people with genuine health problems.  And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.

A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious.  Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”.  Nor will I accept comments from bullies.  This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about.  Anything else will be deleted.  Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…”  This isn’t the time or the place for that crap, please respect that.  This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.

P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people.  Every one of you who targets me in this way has to know that in your heart.  Have that on your conscience, if you have enough of one to bleed through all your cruelty.  When it’s your turn to face yourself for who you are, you’ll have to answer for things like that.  I hope you can manage.

 

It’s scary to let go of words, when you’re trapped inside them.

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Because there’s a moment when you’ve let go of the words
And you realize that once you let go, they won’t come back
And you’re hanging in the air between the words and the ground
And you don’t know how high you are in the air
And you don’t know how hard you’ll hit the ground
Or how many bumps and bruises that will cause
Even though you always feel better with your feet on the ground
And you desperately, desperately want to be on the ground smelling the earth
But you’re afraid to fall
And you’re afraid to hit
And you’re afraid how much effort it will take to get back in the air
Or whether you can get into the air at all
So you cling and scrabble
Until your fingers break
And you hit the ground fifty times as hard
And stay there fifty times as long
Too stunned to take in
Everything you normally appreciate
About being on the ground

Empty Mirrors and Redwoods

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This was originally written and posted elsewhere on February 25, 2012.

This is in response to a quote:

“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich

This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.

Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.

It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.

There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.

So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”

But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.

On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.

Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.

I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.

Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.

Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.

One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.

I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.

Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”

I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.

To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.

But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.

I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.

So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.

The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.

This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.

I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.

And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.

It’s strange to walk places.

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I walk to most places now.

It’s strange to not have to think about curb cuts, wheelchair-accessible bathrooms, and making sure that the nurse at my doctor’s office moves everything out of the way so I can back my powerchair into the room without bashing into things.

It’s strange to have to hunt around for chairs to sit down in.  Because just because I can walk, doesn’t mean I can stand indefinitely.  In fact, standing has always been harder than walking.  My cane helps signal to people that if I need to sit down, I need to sit down fast.

I am sure that the way I look to people has changed, but I have not yet been able to work out how.  In the past, I remember how people’s estimation of my cognitive abilities went up once I was in a powerchair full-time.  Because apparently I have some quality of my appearance that usually makes people underestimate me cognitively, but if I’m in a wheelchair, they can blame that quality on a physical impairment.  Now that I’m out of the chair, I wonder if I’ll be getting treated like a two-year-old more often again.  Or if enough has changed, that that won’t happen either.

I may be walking places, but my identity has not caught up with the idea of being a walking person.  I still imagine that I’m in a wheelchair.  Of course, I’m not fully out of the wheelchair, either.  I still use wheelchairs for distances I can’t manage yet.  But when I do walk, I still somehow imagine that I’m in a wheelchair, and I’m always surprised to find that I’m not.  Everything looks different when I walk, it’s all viewed from a different angle in more ways than one.  I’m still not used to it.

It’s not just a matter of identity, it’s a matter of perspective.  Literally the angles are different.  The places I can go are different.  The expectations I get from others are different, and not always what you’d expect.

And I feel like I haven’t quite caught up yet.

I also feel like very little about me has actually changed, and yet other people see a huge change because the categories of full time power chair user and person who walks with a cane and may sometimes use a manual wheelchair are so different in their minds. The equipment you use becomes how they see you, even other disabled people do this.

You know who I really look up to?

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It’s people who have done something really bad, or even almost done something really bad.  Up to and including torture, murder,  and things like that.  And who are able to look at themselves with unflinching honesty.  Who are able  to take that look at themselves, fully comprehend the impact of their actions on others, and then move on with their lives a changed person.

I sometimes envy them.  I have done bad things, certainly.  But I am not always able to face myself, even after relatively minor things I’ve done wrong.  I go into denial.  I try to find every way not to face what I have done.  Either that, or I take too much responsibility, but I take responsibility for things that aren’t actually my fault or my doing.  Much harder is to take a true, honest look at myself, see what I am responsible for and what I am not, and try to specifically take responsibility for the parts that are really my fault, and do my best to fix what I can fix and move on from what I can’t.

As far as I can tell, that’s hard for just about anyone.  Most of us run around not facing the way our actions affect other people.  Most of us have a hard time seeing ourselves, and the consequences of our actions, clearly.  Most of us either take responsibility for things that aren’t our responsibility, fail to take responsibility for things that are, or, more usually, a little bit of both, here and there.  All of which ultimately evades our ability to accurately take responsibility for things we’ve done wrong.

I have a lot of respect for Dave Hingsburger, author of the blog Rolling Around In My Head.  He has spent pretty much his entire career as a writer atoning for unforgivable things he did when he was working as staff in institutions for people with developmental disabilities.  He wrote the program that gave a DD woman burns all over her skin from an electric shock device similar to those used at the Judge Rotenberg Center.  (If you want to read about that and much more, read his book I Witness: History and a Person with a Developmental Disability, which is an extended interview with a wise old woman.)  He has always been a role model to me in how to responsibly face up to what you have done wrong, and how to make it right as much as you can.  I know it doesn’t come easy to him, but he’s better about it than most people I know.

There are people who try to fake such transformations, of course, and I wouldn’t trust them further than I could throw them.  I know someone who hurts people and fakes remorse in a cyclical way that never goes anywhere.  But real understanding of the wrongs you have done, and real remorse, has a look to it that can’t be falsified.

I am always amazed when I see criminals recount their crimes with an unflinching accuracy combined with a clear acceptance of what they have done, the harm they have done others, and their role in making it right in any way they can, as well as the realization that even though they will have to atone forever, some things can never be made right.  It feels like despite the horrible things they have done, they are on some levels better at behaving ethically than a lot of ordinary citizens who can’t even face up to the last time they lied to their wives about money or something else little like that.

Anyway, I’ve always admired people who can do something really bad, look themselves in the mirror, and turn their lives around.   The real thing I mean, not people who fake such a turnaround while looking for admiration or forgiveness in all the wrong ways.  I hope someday the rest of us can be that courageous.

Mud and wood-sorrel.

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Who did you hold when you fell to the floor?  And will you ever tell me more? Your cast iron hands and your filigree mind have never had much time for my kind. I can rise from the floor and take my leave of here, anytime I want. Just remember, anytime I want.

Tell me of earth, you who have never touched it, but only held it in your mind, an abstract component in one of your filigree spells. And I’ll tell you of words, I who have seldom seen them but as the birds that Donna spoke of, falling without a sound. And maybe somewhere we can touch and find our common symmetry. Or maybe only common disdain. So common, that disdain.

I held out to you a hand full of soil drenched in water. It had the smell of roots, of fallen needles, the beginning of green wood-sorrel. You shouted, drop it, get out, get it out of here!  Get my damn mud out of here before it ruins your floor, your house, your clothes, your furniture.

I fell down on the floor to examine the soil. I ran it over my fingers and inhaled the rooty scent.  And I could find nothing amiss. Nothing of this mud you spoke of with such disdain.

You were never aware of the power of the words you threw behind you, one scrap, one song, one to sting. Mud, you called it, and suddenly it became filth, and I became filth by association. You never saw a beautiful or useful building constructed of mud, I imagine, nor all the other uses of mud… or the very tone of your voice that tells us all “Mud is beneath me, beneath me, beneath me, Mud is beneath me” would simply not be.

But people heard your words carried on the wind. They do that. Your words ride the wind whether you will them or not. And people hear them, and people change.  Your words carried down to someone whose house was made from mud, and when she heard the tone in your voice when you said mud, for the first time she was ashamed.  Half ashamed, half defiant, but all unnecessary if you’d kept your disgust to yourself.

My voice is the color of mud, and my skin is the texture of bark. My love has the depth of water, my touch is as soft as mist dancing past trees in the dark.

But right now I feel bone dry, as if my roots can’t push the water far enough into the sky.  And there’s haze between me and you.  My eyes are like a desert, my kidneys burn in the night while I’m waiting, waiting to put things right.

Can you enter my life without burning me from the inside? Can you steer your way round the curves of my body without looking for all the ways to tell me they’re wrong to exist. Can you?

Or will you just shout at me that I am mud?  And with your words, turn that into an insult rather than a thing of beauty?

I want to curl up underneath the mud and show you I can turn into wood-sorrel.  Show you that nothing can uproot me, least of all words.  And hold my roots in the ground and turn my leaves to the sky and taste how sweet light is and be cradled in the muddy dark.

Redwood sorrel

(Originally written Oct. 12, 2013)

My worst social trait.

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One of the things I feel the most guilty about is my inability to stay connected with people I care about.

Generally, I can actively have between 1 and 3 friends, at most, at a time.  I may have other friends who are my friends, but I don’t communicate with them.  I don’t even remember, half the time, that they exist.  It’s gotten so bad sometimes that I live right down the hall from one of my closest friends in the world and I have sometimes forgotten that she exists for over a month at a time.

People who are not tied to me closely in a way where I have to communicate with them regularly, don’t stand a chance unless they are able to keep up the lines of communication, themselves.

I try as hard as I can to change this.  I feel horrible about people that I feel like I’ve picked up and then abandoned, so many times over the years.  And then, to make things worse, it can get to a situation where I only contact them when I absolutely need something out of them.  So then it becomes “I can’t even contact you most of the time when I just want to talk to you, but I can contact you when I need something from you.”  That feels horrible.  I know that it’s not the case that I’m just “using” them, I know this is all tied into autism and executive dysfunction and movement disorders and memory problems and inertia and a million other things, but it still feels like this is what’s going on, and I can’t help wondering if they secretly resent me for it.

Sometimes, to make matters worse, there are people I think about all the time, but I can’t write to them.  I get writer’s block every time I try.  I may somehow manage to think about them every day, but I can’t write.  And then the guilt builds up and only makes it harder to contact them.  I haven’t gotten into this cycle with very many people, but when I have it’s been almost impossible to get out of.

And then I try to explain these things to people I’m “supposed to” have ties to, people who are very different from me both socially and cognitively.  There’s one person who’s repeatedly said things to me like “I know you don’t like to write to me” and no matter how many times I explain what’s actually going on, they still say things like that, a lot.

And sometimes I wonder whether everyone except me knows all this about me.  Like whether there’s conversations like “Yeah, she says she likes you, but then she disappears and forgets about you and never talks to you again, except maybe if she needs something.”  I hope not.  But I don’t know.  I always feel like I have to warn my friends up-front that this happens, because it’s so hard for me to stay in touch with people no matter how much I actually care about them.

And it’s hard to deal with this in a world where people measure how much you care by how much you think about someone and stay in touch with them.  I have the problem that I can care very much about someone, and in fact have a very close relationship with them, yet forget about them for weeks or months at a time, and fail to communicate with them for years at a time.  If my friends want to maintain a relationship with me, then they have to put in a larger amount of effort staying in touch with me than they normally would with someone who is more easily able to stay in touch, and this doesn’t seem fair.

And it still doesn’t seem fair even knowing that this is related to specific cognitive limitations.

And I still feel like a failure as a friend, because I can’t communicate with people as much as I want to, or think about them as much as I want to, or both.  I still don’t know what makes the difference between people I think about all the time but can’t communicate with, and people I forget even exist.  It certainly isn’t how close a friend they are, nor is it physical proximity.  There’s someone in particular that I think about frequently, but who I have not written to in probably seven years.  They wrote to me once a few years ago and I badly wanted to write back but no matter how hard I tried, I couldn’t.  It was like bashing my head against a brick wall.  And this person is someone I once had daily contact with, someone I owe my life to.

As far as I know, there’s a few things that overlap to cause this problem.

One of them is a memory problem where unless a memory is specifically being triggered all the time, I’m not going to remember it.  I have a very good memory for things that are triggered in a specific way, and a lousy memory for everything else.  I have been known to be unable to eat because my cupboards were closed and I couldn’t see the food so I didn’t know food existed.  I have the same problem with people.  If the person is not actually there, or not actively communicating with me right at that instant, then I don’t remember they exist.

Another of them is a form of inertia, where actions have to be triggered in specific ways in order to happen, much like memory has to be triggered.  This means that simply thinking about doing something is not enough to make me able to do that thing.  I have to be in a situation that triggers the right reaction.  And writing to people is not an action that is easy for me to trigger into existence.  So even if I remember you exist, I’m not necessarily going to be able to write to you.  This also explains why I’m more able to write to someone if there’s something I need — the need triggers the action.  Although need doesn’t always trigger an action, it all has to align correctly (so there’s someone I needed something from for years and I never could write to him because it wasn’t exactly aligned right to trigger the action of writing).

Another of them is a trouble with multitasking.  Staying in touch with people is not a simple action like picking up a ball.  It is a complex action that involves many different cognitive and physical aspects all at once.  This means that in order to happen it’s not enough for one thing to be triggered by one other thing.  Everything has to line up perfectly.  If even one part of this large chain of events is out of place, then I’m not able to do it.

The multitasking problem is also evident not just in the amount of parts it takes to make the action happen, but also in terms of paying attention to multiple things at once.  There’s a reason that I am able to stay in touch with one or two people, but not more than that.  One person takes up all of my attention, then I have very little attention left over for anyone else.

And this is all besides the fact that I’m pretty introverted by nature and I don’t automatically spend my time thinking about people.  I think if I were extroverted I would still have trouble keeping in touch with people, but it would be less trouble because my mind would be more drawn to thinking about them all the time.  I can go a long time without thinking about people at all.  Even when I write for my blog, it is easier for me to pay attention to what I am saying, than it is to pay attention to all the people who might be reading it.  I am always genuinely surprised how many readers I have, and sometimes alarmed by that fact.  Even though I feel like I am someone who cares deeply about people in both the general and the particular, my mind is not automatically drawn to thinking about people, as a topic.  Right now I mostly think about crocheting.

I’m sure there’s other things, many of them autism-related, that play into this as well.  And it doesn’t just affect friends, it affects family.  I have a horrible time staying in touch with my family, and I feel constantly guilty about it.  (Worse when I get letters from relatives that contain assumptions like “I know you don’t like writing to me”… ouch.)  Especially since I get a lot of support from my brothers at times, but never ever talk to them, rarely talk to my father, and only sometimes talk to my mother.  It doesn’t matter how much I care about or love someone, it can’t overcome all these difficulties.

So if you ever notice this pattern in my communication with you (this includes my inability, sometimes, to respond to blog comments), try to understand that it’s not personal.  I only have one person in my life that I’m in consistent contact with right now, and another person that I’m in semi-consistent contact with, and that’s usually about my limit right there.  Three people happens sometimes but it’s rare.  Right now it’s one and a half people — one very consistent contact (Anne), one less consistent contact (Laura), and a lot of very, very scattered contact with other friends and family.  And I can even forget Anne exists, even though that doesn’t happen as often as it would with other people because of a type of connection we share that as far as I know is completely unique — I can’t form that connection with people on command, it just exists, and I’ve never had that type of connection with anyone else.  And even with that deep, intimate connection I can occasionally forget her for a week or so.

And I’m very sorry, to the 15+ people I’ve cared deeply about and almost entirely lost contact with over the years.  If I could change anything about myself socially, this would be it.  But I’ve never been able to change it.  It makes me feel like I’m not capable of “real” friendship, even though I know I am.  I am lucky that I have some very tolerant friends.  People who take such lapses in contact personally, won’t do well in a friendship with me.  Not that I judge you if you do take it personally on an emotional level — we just may not be compatible if you do.   But do try to understand that my level of contact with you is not at all related to how much I love or care about you.