Category Archives: Medical

Autistic catatonia + adrenal insufficiency and/or myasthenia gravis.

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So as far as I know I’ve been/had:

  • Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
  • Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
  • Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
  • Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,

So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.

I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.

Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.

This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.

Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.

Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.

 

Deliberately stressing me out is, at this point, assault.

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That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

Almost Alike: A Medical Cautionary Tale

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Blue medical bracelet with a medical symbol in white and the words "Adrenal Insufficency" on a metal plate.

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

  • Bronchiectasis (high-resolution CT scan)
  • Frequent bowel obstructions (x-ray)
  • Central sleep apnea (sleep study)
  • Obstructive sleep apnea (sleep study)
  • Early-onset gallbladder disease (ultrasound)
  • Exotropia (eye exam)
  • Gastroparesis (gastric emptying scan)
  • GERD – reflux (barium swallow)
  • Esophageal motility problems (barium swallow)
  • Dysphagia (barium swallow)
  • High cholesterol (blood test)
  • Hypermobility syndrome (Brighton criteria)
  • Myasthenia gravis or related condition (single fiber EMG)
  • Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
  • Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

Unfolding

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Me with Fey sitting on my shoulder, and a brown and yellow afghan in front of me.

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

Gastroparesis Awareness Month: A Day In The Life

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This is my second post for Gastroparesis Awareness Month.  Read my first post, Tube Love, here.  My first post was a love poem to my feeding tube.  :-)  My second one is a little more serious and a lot longer.  I apologize for the length.  I have trouble reading lengthy posts myself.  But sometimes I’m incapable of summarizing myself, so I have to write posts that are too long for even me to read.  I hope you’ll at least be able to skim through the important parts.  I’ve tried to break up the text with lots of photos, to see if that helps any.

A DAY IN THE LIFE

My day starts when my morning caregiver arrives.  I don’t just have gastroparesis.  I have a variety of physical, cognitive, and developmental disabilities that make it so that I need help to do a lot of things to get through my day.  So there are several times throughout the day when there is a caregiver here, the rest of the time there is one on call at short notice, and my day officially starts when the morning caregiver comes in the door.

My GJ feeding tube

My GJ feeding tube

The very first thing we do is start cleaning out my feeding tube.  Nobody taught us to do this.  This is something I learned how to do, in order to avoid having to keep getting it replaced due to clogs.  I push water directly into the j-tube, then I pull it out again, over and over.  Slowly, with the water come what we call “tube worms” — long wormy-looking pieces of food that have gotten stuck inside of the tube and would have caused a clog had we not got them out.  We know the tube is running smoothly when we can push water through it without a certain amount of resistance pushing back at us.  When we near that point, we stop and start concentrating on meds.

The first medication, and one of the most important ones that I take, is called Phenergan.  I call it my butt pill — the medical term is suppository, but I always forget that word, so butt pill it is.  They hand me the pill and a glove, and I turn around and stick it up my butt and wait for it to dissolve.

butt pill

Me holding a “butt pill” — a Phenergan suppository — in a gloved hand.

Phenergan is one of six nausea medications I take to get through the day.  Different people’s gastroparesis symptoms are different.  Some people’s main symptom is pain and bloating.  Mine is nausea, really bad nausea.  So I am on no less than six nausea meds.   The most important ones are Phenergan, Reglan, and Marinol.  I also take Zofran, Benadryl, and Lorazepam for nausea.

Reglan works by making my digestive system move faster.  The core trait of gastroparesis is that your stomach is partially paralyzed and moves too slow, failing to empty food into your intestines fast enough.  Reglan is one of the few treatments that targets that slowness directly.  Unfortunately I have intolerable side-effects at a full dose of Reglan, so I have to take a half-dose.  I am hoping one day to be able to switch to domperidone, which I would have to order from outside the country.  Domperidone is like Reglan, but it does not cross the blood-brain barrier so it has fewer side-effects.  Not being FDA-approved, however, is a major obstacle to people with gastroparesis in the USA.  It is approved in most other countries, though, so it’s possible to order it, according to my doctors anyway.

Marinol is derived from marijuana.  I was highly skeptical of it at first because of that.  But at the time they suggested it, I was on all five of my other nausea meds and still not able to come home from the hospital.  Marinol often works where all other nausea meds have failed.  It does not generally get you high, although it can have other unpleasant side-effects like anxiety and paranoia.  I luckily have had few side-effects, no high, just a huge reduction in nausea.

Zofran is a nausea medication often given to people on chemotherapy.  I don’t understand what the big deal is supposed to be, though.  Unless I combine it with Benadryl or Lorazepam, it really doesn’t do a lot for me on its own.  And I’ve heard the same from a lot of other people with gastroparesis.  Zofran is a pill that dissolves under my tongue, so I don’t have to swallow it or put it through the tube.  That’s the one benefit is it’s fast-acting and easy to ingest.

Benadryl and Lorazepam are more well known as an allergy medication and an anxiety medication.  However, Benadryl is closely related to Dramamine, a well-known nausea med, and has anti-nausea effects itself.  Lorazepam, likewise, has anti-nausea effects.  These are medications I take for multiple reasons, both the nausea side and the allergy and anxiety side.  I take a fixed dose, but I also can take them PRN, meaning whenever I have extra nausea and need more medication than I would normally take.  Which happens most days.

My caregiver removes the drainage bag from my g-tube.  Overnight, I always wear a drainage bag that drains the contents of my stomach into a bag.  Before I did this, I my bile used to build up in my stomach because it wasn’t getting passed along down to my intestines.  Then it would creep up my esophagus, into my throat, and I’d wake up choking on it.  I’d cough it out for over an hour sometimes, sometimes having to call an ambulance if I had enough trouble breathing.  I have bronchiectasis, a form of COPD that basically ensures any time I aspirate enough stomach fluid, I’m going to get aspiration pneumonia or at least some other lung infection.  So this was a big deal, and it was happening several nights a week.  With the drainage bags, and other drainage practices, I only get aspiration pneumonia a few times a year.  Which is still too much, but it’s a drastic cutback and gives my odds of surviving into old age a much-needed edge.

After we’ve removed my tube feeding pump and cleaned out my tube, we mix up my medications.  Most of my medications are in liquid form, the best form for a j-tube because j-tubes are easily clogged.  We use a syringe to put the medications in.  The j-tube has two syringe ports, one for a small syringe and one for a larger one. You hold closed whichever one you’re not using, or you can get sprayed in the face.

Inserting medication into my j-tube

Inserting medication into the small port on my j-tube.

After meds, put Diet Coke into both of the tubes and let it soak for ten minutes or so.  This helps dissolve any clogs.  Hot water is supposed to be as good as coke, so we flush it with hot water afterwards.

Then we do something that polite people call ‘venting’, but the nurse that taught me calls it ‘burping’ and the idea fits.  You open up the g-tube over a cup.  We have a designated green Burp Cup.  I recommend yellow or green cups to camouflage the color of the bile a bit.  What nurses teach you to do, is put the cup under the tube, unclamp the tube, and unscrew the cap.  What’s supposed to happen then is all your stomach fluids flow out of the tube and into the cup.  But it’s not that simple.

burp cup

My burp cup with some liquid in it, and a syringe in front of it.

Here are some of the things I have to do in order to properly burp enough air and fluid for it to actually empty properly and prevent aspiration.  Some of these things could damage the wrong kind of tube.  So don’t just do something because I wrote about it here.  But here are the kind of things I do during a burp:

  • I move the tube in and out.  Pulling it out as far as possible, holding it to see if more fluid or air comes out, then pushing it back in.  Sometimes I move it almost in a pumping motion, sometimes much slower.  I have to be careful, as I do this, not to pull so hard or so far as to actually dislodge the tube.  Every tube is different, and some dislodge more than others.  You have to know your tube well to do this.
  • I press on my stomach in different areas, which helps move the bile and air around.
  • I swallow a lot of air, which forces the bile out of the tube through air pressure.
  • I use my stomach muscles to push.  Almost like you push when you’re on the toilet, except it’s your stomach, not your bowels.
  • If there is any solid matter that seems to be getting in the way, such as blood clots (I have an intermittent bleed in my stomach), I stick a bent paperclip inside the g-tube.  I keep one end bent so that it will never get stuck inside the tube.  And I use it to either hold solid matter out of the way so the liquid can get out, or to crush up or move the solid matter around to help it come out.
  • I use a syringe to either push water into the tube, or pull bile out of the tube.  This can help when things are stuck.  It can also help to dilute things when the stuff in your stomach is too thick.
  • Speaking of diluting things, sometimes I drink a bit of water or ginger ale and then jump up and down to mix it up with my stomach fluids.
  • I chew gum.  This seems to stimulate both bile production and gas production, and sometimes this helps move things through or get things thinned out.

Understand that some of these are things that no doctor would ever recommend you do to your tube.  And since each tube is different, what I’m doing above might destroy another type of tube.  So my advice if you have a tube, is get to know your tube really well before you do anything unusual to it, and get to know your body, too.  Some of the things I do could also make a person really sick in the wrong circumstances.  In fact it sometimes makes me sick, if for instance I swallow a lot of air but I can’t get it to come out the tube.

Then we dump the contents of the Burp Cup in the toilet (which is every bit as gross-looking as it sounds), rinse it out a few times and keep dumping that in the toilet, and then fill it up with soapy water and set it on the back of the toilet to soak.  Without the soapy water, it starts to really reek after awhile.

Soon enough it’s time for more medications.  Those work the same way the original ones worked:  They go in through the j-tube.  And this is also where my tube feeding starts.

I’m fed a formula called Osmolite.  It’s basically a pre-mixed formula, it’s the same every day.  It’s beige and it smells and tastes gross, but luckily I don’t have to smell and taste it.  It looks exactly like what we used to feed the baby birds at the wildlife rehab center I used to work at.  Anyway, a j-tube is different from a g-tube in some important ways when it comes to feeding.

Osmolite

A bottle of Osmolite hanging inside of its backpack.

A g-tube goes to your stomach.  Your stomach is designed to take in large quantities of food at once.  That means that your stomach is capable of stretching to accommodate your food.  People who are fed by g-tube can often be fed simply by pushing lots of food in by syringe, all at once.

But a j-tube goes to your intestines.  Your intestines are not able to stretch to accommodate the food you need to eat.  So you need to be fed extremely slowly.  For me, this means I’m on a feeding pump.  It gives me 45 milliliters of food per hour.  Ideally, I would get 90 mL per hour, but that made me really sick, so I use 45.  This means that it takes 24 hours to feed me the whole container of food.  So I have a backpack the feeding pump and the Osmolite live in, so if I have to go anywhere, I can just wear it on my back.

The feeding pump itself is just a little box that attaches to a tube going out from the Osmolite bottle.  The pump slowly moves the food into my intestines, keeping it at a constant rate day in and day out.  I sometimes give myself a few hours of break in the morning, but other than that I am constantly eating, and feel neither full nor empty.

feeding pump

An Enteralite Infinity feeding pump, inside its backpack.

The only time I’ve felt hunger has been since going on steroids for severe adrenal insufficiency.  Steroids can cause such intense food cravings that I end up eating small things and having to drain them out of my g-tube to avoid aspirating them.  I’ve talked to my doctors and they say I’m not to blame for this, because it’s a known side-effect of dexamethasone.  I just have to be careful.

The feeding tube has to be set up properly.  The tube is connected to the Osmolite bottle, wound through the backpack and into the pump, then wound out through another hole in the side of the backpack.  Then it’s plugged into my j-tube.  The settings have to be cleared so the pump knows it’s a new bottle, and not the same old one.  If it thinks it’s the old bottle, it will stop feeding me early.  Then we have to make sure it’s still set to the right feeding speed.  Then we “prime” it by pressing a button to move the food through the tube quickly.  And then we plug the tube into my j-tube and turn it on.

Putting the Osmolite tube into the large port of my feeding tube.

Putting the tube from the Osmolite bottle into the large port on my j-tube.

the osmolite tube connected to my feeding tube

The Osmolite tube connected to my feeding tube.

If anything goes wrong with the feeding, there are a bunch of different, loud alarms that will go off.  There’s two separate alarms for problems with food flow, one for trouble with food flowing into the pump, one for trouble with food flowing out of it.  There’s another alarm for if it runs out of food, and another alarm for when the feeding is supposed to stop.  And an alarm for if you plugged it in but forgot to turn the pump on.  The main thing they have in common is that they are very loud, annoying, and impossible to ignore.

After my feeding is set up, the next big part of my routine is another butt pill.  I have an alarm clock set for that.  The alarm clock is out of my reach, so in order to get to it I have to move out of my bed.  This is enough of a prompt that usually I can go get the butt pill and insert it into my rectum with no problem.  My problem is with initiating actions, and the alarm clock placed out of my reach helps me initiate.

butt pill

Standing in the kitchen holding up a butt pill (Phenergan suppository) in its wrapper.

At some point, a different time each day, a licensed nursing assistant (LNA) comes in to help me bathe.  The first thing she does is clean the mucus, and sometimes blood, off of my stoma site (the area where my feeding tube enters my body).  And then we decide how much else of me to wash.  Washing is very painful for me, so I often opt to only wash the most essential parts and put medicated lotions on, and deodorant.  I need help washing because of a movement disorder, although even as a child I was never good at bathing and I went through a lot of pointless and humiliating training about bathing in mental institutions as a teenager.

I don’t have daily mealtimes, because I am eating literally all day and all night.  The closest I have is a series of medication routines, and there are people here who help me perform those.  They involve mixing up medications and putting them into my j-tube in a certain order.  That kind of thing is too complicated for me to do on my own.  I can do maybe one medication, if I’m lucky, but I can’t do the huge number of meds that are required for my daily routine.

The people who come to help me out basically do nearly everything for me.  They either help me do the thing entirely, or they help me get started.  For instance, there are many things that I can’t do on my own, but that I could do if you handed me the materials to do it with.  Like I would not be able to go into the bathroom and pick up deodorant and put it on, but if you hand me the deodorant I can put it on.  This is because of problems initiating associated with my movement disorder.  So I get anything from assistance with starting things, to total assistance, and it all depends on what I need that day.

I wear a drainage bag on my g-tube during afternoons and evenings.  It collects everything from inside my stomach.  It has an accordion that you press down, and as the accordion pulls itself out again, it pulls the liquid and gas out of my stomach.  As long as I keep pressing the accordion as it comes out, it will keep sucking in bile.  Then when someone gets here, they can dump all the bile in the toilet and wash out the drainage bag with vinegar and water.  I have devised a number of ways to keep the drainage bag in good shape so that I can use it over and over again for months at best, even though they are single use only.  They cost $80 and aren’t covered by insurance, so we have to be creative.

Drainage bag connected to my g-tube, contents pretty full.

Drainage bag connected to my g-tube, contents pretty full.

The evening routine is much like the morning routine, including burping the g-tube manually, and a lot of medications at different times.  There’s also a bunch of things, like physical therapy, that don’t have much to do with the gastroparesis or feeding tube at all.  I’ve needed services to survive for longer than I’ve had gastroparesis, and I’d still need them even if I didn’t have gastroparesis.  It’s just that right now, a good deal of my daily routine does revolve around gastroparesis.

Night is the scariest time for me with gastroparesis.  This is the time when I am most likely to aspirate.  What happens is usually that something goes wrong with the drainage bag, and it isn’t draining as much as it should.  This usually means a blood clot or something is stuck in the tube, preventing bile from exiting my stomach.  So the bile goes up into my esophagus.  I have central and obstructive sleep apnea and sleep with a bipap machine that blows air into my lungs.  When the bile goes into my esophagus, the bipap blows it down into my lungs.  I wake up choking and coughing.

Me wearing my bipap mask at night.

Me wearing my bipap mask at night.

Then, I usually spend at least an hour coughing up bile.  If it’s bad enough that I can’t breathe, I have to call 911.  But often I just sit on the bathroom floor with a wad of tissues and cough up bile and throw them away as fast as humanly possible, trying to get it all out of my lungs.  I have a condition called bronchiectasis that makes it easy for me to get lung infections and hard for me to clear lung infections.  So every time I have a bad enough aspiration, I have to go on antibiotics immediately.  The goal is to prevent aspiration pneumonia, although usually I get aspiration pneumonia anyway and the antibiotics just help me fight it off in the end.  Right now, as I’m writing this, I have aspiration pneumonia for the second time in the past year.  But I’m doing better than ever because I’m able to treat it properly now.

But the good news is that with the feeding tube, I’ve gone from aspirating several nights a week, to aspirating several nights a year.  Any aspiration is too much aspiration, but with the feeding tube I have the chance to live a lot longer than I was going to live without it.

The very last thing that happens in my day is a very early-morning phone call and alarm clock.  It’s the Phenergan suppository again.  That Phenergan suppository is the bedrock of my anti-nausea regime, and it’s vital that I get every single dose.  The Phenergan, Reglan, and Marinol are the most important nausea meds and I never skip a dose, ever.  It gets to the point that I look forward to sticking that Phenergan pill up my butt because I know how much better I’ll feel afterwards.  And as someone who doesn’t like anything put up any orifice where it doesn’t belong, that says a lot.

ABOUT GASTROPARESIS

Gastroparesis is a really weird disease in some ways.  One of the weirdest parts of it, is that the severity of your symptoms has no correlation to the severity of your delayed stomach emptying.  So someone can have a severe stomach emptying delay but barely any symptoms.  Someone else can have a mild stomach emptying delay but very severe symptoms.  I’m someone who has (as far as we could determine) a mild to moderate stomach emptying delay, but severe enough symptoms that I require a feeding tube both for the nutrition and to avoid aspiration.

Also, different people have different symptoms.  Here is a description of gastroparesis taken from one of the common gastroparesis awareness ribbons:

Paralysis of the stomach that is estimated to affect 5 million Americans with no cure and few treatments.  Foods eaten take hours or even days to leave the stomach leading to nausea, pain, vomiting, malnutrition, bloating, weight issues, and more.  It does not mean that you are not hungry… it means that you are starving but cannot eat the food right in front of you.

Another awareness ribbon reads:

Gastroparesis is a rare, debilitating disease that literally means paralysis of the stomach.  When someone with Gastroparesis eats, the food stays in their stomach for hours or even days.  Symptoms of Gastroparesis include = Severe abdominal pain, gastro reflux, vomiting, nausea, feeling full after eating very little, bloating, heartburn, unintentional weight gain, unintentional weight loss, malnutrition and much more.  There is currently very few treatments and no known cure for Gastroparesis.

But even within those lists of symptoms, different people experience different things.  Some people lose a lot of weight.  I lost a total of 70 pounds overall.  Other people gain a lot of weight, or lose weight and then gain it back again as their body enters starvation mode and tries to hang onto what calories it can.  Some people’s main symptom is pain and bloating.  My main symptom is nausea and loss of appetite.  I had such severe nausea that even before I got the feeding tube, I couldn’t make myself drink enough Ensure to survive, until they put me on six different nausea medications.

MY VIEW FROM THE SUPPORT GROUPS

Something I see very often in the online support groups, is people getting substandard care for gastroparesis.  Their doctors don’t understand gastroparesis, so they don’t understand how to treat it.

One of the biggest mistakes doctors make is to assume that the person’s symptoms will only be as bad as the delay in stomach emptying.  As I mentioned earlier, severity of symptoms is, for reasons not entirely understood, not well-correlated with the delay in stomach emptying.  It may be that there are other things, like problems with the vagus nerve, that cause the more severe symptoms some people report even when their stomach is emptying relatively fast for a person with gastroparesis.

But at any rate, I see way too many people struggling to keep enough food down to maintain a healthy weight, but being told by doctors that everything is okay because their emptying delay is not very severe.

I also see a lot of people whose doctors give up on nausea medication before they even start.  Just to give you a clue, this is what my nausea medication looks like.

Every day, I take six different nausea medications.  I take Reglan (which is not just a nausea medication, but also speeds up your stomach), I take Zofran, I take Phenergan suppositories, I take Marinol, I take Benadryl, and I take Ativan.  You may not know that Benadryl and Ativan treat nausea, but they do.  And it is the combination of those medications that got me out of a five-week-long hospital stay a couple years ago.  Marinol was the final addition.  I had been afraid to take it because it’s derived from marijuana, but it doesn’t get me high and I have no real side-effects from it.  Marinol often helps people with nausea who can’t be helped by any other medication, and I fell into that category.  I was already on five medications, which were helping somewhat, but only the addition of Marinol allowed me to leave the hospital without a feeding tube, and stay home without a feeding tube for several months.

Six different nausea medications of various types

All of my nausea meds: Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Phenadoz (Phenergan), and Ondansetron (Zofran).

What I see happening to other people, though?  Their doctor offers them a little Zofran or Reglan, maybe both if they’re lucky.  Then, if they don’t improve sufficiently, they’re told they are out of luck, and there’s nothing more the doctor can do.  I understand the risks of prescribing six different medications that are all sedating in their own ways.  But it’s also a huge risk to allow your patient to starve to death because they can’t keep food down.  Many times these are people who won’t need feeding tubes, people who won’t need any drastic interventions, all they need is something to keep the nausea under control.  And their doctors won’t experiment with combinations of drugs for that.  They just give up after the first one or two fail.

I also see a lot of people whose doctors simply don’t know much about gastroparesis and won’t do much to find out about it.  So they won’t get referred for the best treatments, or they’ll get referred to a specialist who also doesn’t know much about gastroparesis.  And they’ll get passed around in circles by doctors who don’t know what to do with them, getting sicker and sicker along the way.

People who have multiple health conditions tend to have the most trouble getting good healthcare, and gastroparesis is often the results of another health condition.  Diabetes is a common cause of gastroparesis.  Some eating disorders can result in gastroparesis.  In my case, we suspect it’s caused by an autonomic neuropathy that runs in my family.  But we don’t know.  When I was diagnosed with severe secondary adrenal insufficiency, we had a lot of hope that the gastroparesis symptoms would go away, because adrenal insufficiency can mimic gastroparesis.  But the symptoms didn’t go away.  I gained a little weight back on steroids, but that’s all.  Now we’ve found out through single-fiber EMG testing that my mother and I have a neuromuscular junction disease, probably something like myasthenia gravis.  We also have some form of hypermobility syndrome, which can sometimes be tied to a connective tissue disorder, which sometimes can be tied to gastroparesis.

And I’ve noticed among the support groups that most people with gastroparesis are like me:  They have a complicated medical history with a good deal of diagnoses that are connected in ways that aren’t fully understood.  There’s people with mitochondrial disease, there’s people with Ehlers Danlos and related syndromes, there’s people with eating disorders, there’s people with adrenal insufficiency, there’s people with diabetes, there’s people with neuromuscular junction diseases, there’s people with autonomic dysfunction, and there’s even people with several of these things at once.  And the more things we have, the less our doctors seem to understand what’s going on.  I’m lucky to have a dedicated team of specialists for all of my conditions, who are willing to work together to keep me alive.  Without them I wouldn’t be here right now.

There have always been some doctors who felt like my life wasn’t worth saving, or that things weren’t as bad as they actually were.  The doctors I’ve kept are the ones who have done the lung x-rays and CAT scans to prove I had pneumonia and bronchiectasis, the ones who did the gastric emptying studies to prove I had gastroparesis, the ones who did the blood tests to prove I had adrenal insufficiency, the ones who did the EMG to prove I had a myasthenia-like syndrome.  Basically, the ones who have gone out and gotten the proof to fight anyone who says either “This kind of patient isn’t worth keeping alive,” or “She’s exaggerating her symptoms, it can’t be that bad,” or “She’ll never be able to take care of a feeding tube anyway.”

WHY AWARENESS?

I’m not usually a big fan of awareness days, awareness months, and that kind of thing.  But there are things I make an exception for, and gastroparesis is one of them.

I went for years with gastroparesis symptoms before I was properly diagnosed and treated.  In fact, the first time I was hospitalized for gastroparesis, was something like five years before I was diagnosed.  They put me on medications for “chronic nausea” and didn’t do any further looking for the source of the nausea.

If I had been diagnosed and treated earlier, there’s a chance that it would never have gotten as bad as it is now.  There’s a chance that I wouldn’t need a feeding tube, that I wouldn’t have gotten aspiration pneumonia eight times in one year, that I wouldn’t have entered adrenal crisis from the illnesses that followed that.

Because for someone with a complex medical history, one thing is never just one thing.  Gastroparesis causes me to have bad reflux.  The treatments I use for sleep apnea cause me to aspirate that reflux at a higher rate than normal.  Bronchiectasis causes that aspiration to result in pneumonia pretty much every time.  Adrenal insufficiency means that getting sick with pneumonia puts me into adrenal crisis without treatment.  Everything builds on each other until it’s actually pretty surprising that I’m alive at this point.

Gastroparesis can be pretty bad even if you don’t have a complicated medical history.  But as I said above, most people I know with gastroparesis do have a complicated medical history.  Whether it’s eating disorders, diabetes, mitochondrial dysfunction, adrenal insufficiency, Ehlers Danlos, autonomic dysfunction, or some unholy union of many of these things, people with gastroparesis rarely seem to come with just one disease.  And that makes it even more important that people know what gastroparesis is, and what it looks like, so they can do something about it.

By the time I was diagnosed, I had been living on grits, crackers, and broth for weeks and had lost forty pounds.  They didn’t believe me about how little I was eating until they saw me fail to eat anything at all for weeks in the hospital.  In their eyes, a fat person must be eating, even if that fat person was losing catastrophic amounts of weight.  It’s even worse for people with gastroparesis who experience weight gain as part of the symptoms, because anyone who has eating problems and is gaining weight has less likelihood of being believed by doctors, even though medicine knows perfectly well why this happens.

There were a few things that should have been big red flags for me, but I simply didn’t know enough to understand their significance.

One of them was that when I threw up, I would often throw up food from a long time ago.  Like from up to three days ago.  I just kind of assumed that the food was coming from somewhere really far down my digestive tract, but it was actually sitting in my stomach all that time.

Another one was that I always felt better if I didn’t eat, or barely ate, for days at a time.  There were times when I’d live on small amounts of broth, oatmeal, and grits for weeks or months at a time, and I always felt much healthier afterwards.  Most people don’t feel healthier after barely eating anything for a long time.

The constant nausea should have been a red flag, too.  But I was so used to weird symptoms that I honestly didn’t even think to classify that as especially weird.

Also, I had motility problems in other areas of my gut.  Ever since childhood, I had bad constipation, sometimes to the point of bowel impaction and blockages requiring emergency room trips and hospitalizations.  As an adult, they found that my esophagus had reduced motility as well, that it didn’t move food as fast as it should.  So my bowels move slowly, my esophagus moves slowly, it shouldn’t be a surprise that my stomach moves slowly as well.  But for some reason they never looked at that until that five-week hospitalization.

And what happened during that five-week hospitalization?  I’d aspirated again and gotten pneumonia.  I was very weak from not eating, from myasthenia-related reactions to vomiting, and from an impending adrenal crisis.  And I demanded that they keep me in the hospital until they figure out why I couldn’t eat, and figured out a way for me to get adequate nutrition again.

They got serious about it then.  They diagnosed the gastroparesis, although they wouldn’t do the final testing for another couple months.  They started me on that intense nausea medication regime.  They tried a bunch of antibiotics that are supposed to speed up your gut, but they just made me more nauseated.  And they started seriously considering a feeding tube.  Marinol is the only reason I didn’t get a feeding tube right then and there, from what I’m told.

At any rate, if you want to know more about gastroparesis, I’d urge you to visit the G-PACT (Gastroparesis Patient Association for Cures and Treatments) website, which deals with gastroparesis and related motility disorders and digestive tract paralysis.  If this sounds like you or anyone you know, please get help, because the longer you go without treatment, the less they can do in the end.  There aren’t a lot of treatments for gastroparesis, and the more extreme the gastroparesis, the more extreme and invasive the treatment is.  So you want to know if you have it, as early as possible.  The treatment I have — a feeding tube — is actually middle-of-the-road for gastroparesis treatments.  It’s invasive, but it can be removed, and you can still eat if you have one.  The most invasive treatments involve things like a stomach pacemaker, or removing your stomach entirely.  So you don’t want it to get that bad before you get treatment.

And it’s one of those diseases nobody seems to have heard about.  Which is one reason that I think awareness is important.  I know that the disability rights movement has a million different critiques of awareness, including the idea that it pits different diseases against each other.  But if I had simply known a few years before, what I learned when I was diagnosed, I could have been spared a lot.  I’m lucky to be alive, given the combination of diseases I have, and I’m far from the only person with gastroparesis whose health is fragile like that.  So I think it’s more important to get the word out than to do what the disability rights movement tells me to do about awareness months.  For things like this, awareness months are really important, because we haven’t got any other way of spreading the word to people who need to hear it.  If any of what I’ve written here, or in my last post, helps even one person, that will be enough.

Tube Love

Standard
Drawing of a GJ feeding tube.

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

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.

 

The Scarf — A Comic About Delirium

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This is not a BADD post.  It’s just a post I’m making for people who might have wondered.  And people who didn’t wonder, but might want to know.  And people who might have experienced something like this, and might be feeling really, really isolated.

In the fall of 2012, I was hospitalized for roughly five weeks with aspiration pneumonia related to gastroparesis and bronchiectasis, and I now know that undiagnosed adrenal insufficiency played a huge part in why I got much sicker than anyone thought I should be.  (My doctor now thinks I probably should’ve been in the ICU during the first part of that stay.  At the time, the first of several hospitalists took the position that he was only going to treat my pneumonia and was going to ignore all of my other conditions.  It was hell on earth and there were times I only existed by the skin of my teeth.)

It was a grueling and traumatic experience.  Especially things related to the severe delirium I dealt with both in the hospital and after I returned home.  And the aftermath of that delirium, which took over a year to fully dig my way out of.

The worse your cognitive impairment after a period of delirium, the more likely you’ll die later on.  So delirium isn’t just this weird thing that causes disorientation, cognitive impairment, and sometimes hallucinations.  It’s also something that can kill you.  It’s a form of brain damage, as far as they know, and each delirium makes you more vulnerable to further delirium.  But exercising your brain can help.

So I started taking classes online, to try to keep my brain occupied.  One of the classes was a class on comic books.  The big assignment for the class was to make a mini-comic.  I’m not good at that kind of drawing, and I’ve never been able to finish anything like this before.  But to my surprise, this comic pretty much poured out of me.

I want to make one thing clear though, before anyone reads it:  This is not the literal narrative of what happened to me.  It combines elements of things I experienced in a literal way, elements of things I experienced in the delirium, elements of a story I wrote later on in order to try to deal with the feelings the delirium and hospitalization caused in me, elements that are pure metaphor, and elements that are put there to make the story flow easily.  This comic is about emotional truth, not literal truth.  For instance, I didn’t just “wake up from the delirium and squeeze someone’s hand” (although there was a period of time when holding someone’s hand was quite important) — that’s just a shorthand for a much more complicated process than I could do in seven pages of comics.  The tube feeding came months after the first hospitalization, not immediately.  And obviously the person I drew looks nothing like me.  Some of the story follows a stereotypical story pattern for certain things, specifically so that I could explore others without having to flesh out every detail that varied from a stereotype.

The PDF of the comic is available at the following link:

https://dl.dropboxusercontent.com/u/92647909/TheScarf.pdf

Here’s a picture of the front page:

The Scarf.  Stylized drawing of a woman holding a red scarf, inside a white circle, on a black background.

There’s two things that I hope about this comic:

1.  That it can express something of what I went through.  Because it was one of the most profoundly isolating and lonely experiences of my entire life.  It seriously felt like going into the underworld or something, and after I came back I felt like that world was all over me and I couldn’t break through to the world that everyone else was in.  And nobody could talk to me about it, and nobody could offer any advice, and I felt like I still had a foot in that other-world for over a year.  And like nobody could really see me, because I was in that other-world, and I couldn’t see anyone else, because I wasn’t in their world, and it was very frightening and isolating and I most of the time had no words to articulate any of it.  Except occasional bursts of almost-poetry.  But it felt like whenever I said anything, people just stayed silent, they didn’t know what to say or how to respond, and that made me feel even more distant and frozen and dead.  Also whenever I was hospitalized or sick I’d fall back into delirium even more easily and that didn’t help either.  Writing this comic was the first way I felt I could express any of that feeling in a big way.

2.  Even more so, I hope that if anyone else has gone through anything like this, that it speaks to them in some way.  That’s the other reason I’m posting it here.  My friend urged me to make it public for the sake of people who might be feeling the same isolation.

Also, that holiday season, my mother bought me a red scarf and pinned a note to it saying “to wrap around your heart”.  It means everything to me.  I still have it, and I especially wear it when I’m feeling like I’m being dragged too close to the delirium-underworld again.  Which happens, but less and less often, especially since treating the adrenal insufficiency.

I hope this is meaningful to someone besides me.

Love, Fear, Death, and Disability

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People fear and even hate disabled people because we remind them that they are both fragile and mortal. They don’t want to remember those things about themselves. And they find ways to physically shut us away, and mentally shut us out of their awareness. And they delude themselves that they are different. That something they do will prevent them from ever becoming one of us. And prevent them from ever dying.

I have lived a long time as what I’d call precariously ill. A person who’s precariously ill isn’t terminally ill. There’s no saying for sure that we’ll die of our illness. But death is a constant possibility.

In my case, my gastroparesis led me to frequently inhale large amounts of stomach fluid at once. I have bronchiectasis, which makes it easy to get infections and hard to clear them. And untreated, severe adrenal insufficiency, which can turn an ordinary infection into an adrenal crisis. That combination made my health, and my life, very precarious indeed.

I have a strong belief that if people were more open about death, people would be less terrified of their own mortality. And thus less terrified of things that remind them of their mortality. Like, say, disabled people and sick people.

I’ve never had what they call a “Near Death Experience” ™ where you come very close to death and have this fairly uniform experience of a light at the end of a tunnel and all that kind of thing. But I’ve had encounters where I’ve gotten too close to death for comfort. Usually I had an infection that wasn’t playing well with my untreated adrenal problems. I would become extremely weak, so tired that it felt like just keeping my heart running and my basic bodily functions going, was too much. and I was losing the ability to do those background things your body is supposed to do effortlessly. And then I’d see death hanging around, it’s the only way I know how to put it. Sometimes other people around me would see it too.

A light would fill the room. It wasn’t a visible light. It was something I’d see on the inside of my head. It seemed to be coming from everywhere. There was a sense of being more profoundly at home than I had ever been in my life. As if there was this one tiny piece of the universe where I fundamentally belonged, and I had finally found it. There was an overwhelming sense of benevolence and peace.

And there was the sense that if I wanted to, all I had to do was relax and stop fighting. All I had to do was rest. And I could be in that intense, profound place of love forever. But if I fought, and won, it would still be waiting for me when my time had come. It did not entirely urge me either way. It was patient. It had all the time in the world.

But while it didn’t actively urge me to die, death did have a gravitational field. That’s what I called it during my first conscious encounter with it. I was ashamed, at first, to tell my friends what it had felt like. I was afraid they’d think I was weak, or cowardly, or that I had a death wish. So with some disquiet, I told my friend what it had felt like the first time I encountered death in this manner.

It felt, at first, like I couldn’t fight. More than that, I didn’t want to. I couldn’t even conceive of fighting. I had a strong urge just to rest. To allow my heart to stop and my breathing to slow and to surrender myself completely to death. The closer I was to death, the stronger this feeling was. So I started referring to it as a gravitational pull. It was only when I gained a lot of strength back due to medical treatment that I even had the will to resist, let alone the power.

My friend gave me an explanation that made me feel much better about my reactions. It was not that I was weak-willed or wanted to die. It was entropy at work.

Entropy involves a system trying to go to the lowest energy state. In order to survive, living things are constantly fighting entropy. We do this by feeding off of other living things and converting it into fuel to give us the continued energy to survive. If we simply allowed ourselves to go to the lowest energy state without a fight, we’d be dropping dead right and left. Most of the time, we are good enough at temporarily cheating entropy that we don’t feel its pull on us.

But when we are severely ill enough that death is a possibility, then we begin to feel it. We feel how strenuous it is to stay alive. And if we are sick enough, and exhausted enough, we begin to feel an overwhelming desire to allow ourselves to go to that ultimate rest. To allow our bodies to wind down forever. And that is the gravitational pull we have to escape if we are to live.

Much like a black hole has a point of no return, death has an event horizon too. I’ve obviously never been past it. But I’ve seen people and animals who have. And I saw (in my head, not with my eyes) that same intense light around them, that seemed to come from everywhere and nowhere at once. I felt that same profound, unconditional love.

This is how I know that death is nothing to be feared. In fact, even though the separation between us and our loved ones can cause tremendous pain and grief, death itself can be a beautiful process for the person who is dying. It can be for those around them, too, if everyone lets it be what it is.

I want to emphasize something though. Yes, I believe that death can be benevolent, friendly, necessary, and even beautiful. But I also believe all those things about life. And given that we only get one shot at this lifetime (even if reincarnation exists, which I don’t pretend to know) then it’s very important to resist death until it’s actually our time to die.

Our life is something we owe not only ourselves, but the people and society around us. Whether or not we understand our contributions, we each have one, and the world loses something without each of us in it. Disabled people in particular get a lot of messages saying that we are burdens on society, that we do not contribute, and that it’s best if we’re dead. And that’s completely wrong. In fact it’s despicable, unforgivable, to do anything to convince someone that these things are true of them.

So I am not saying “Death is beautiful, surrender to it the first chance you get.”

I am saying “Life is beautiful and you are an important part of the world, whether you can see it or not. You have obligations to the living world, to stay here as long as you possibly can. But when your time truly comes, don’t be afraid. Death is a necessary part of life. And it can be friendly, benevolent, and beautiful in its own right. When your time comes, it’s possible to die with love, without fear.  And if you have ever existed, then some place in time, you always exist.”

One thing that facing death can do, is force you to reexamine your priorities in life. And that can be scary. It can be especially scary if there’s something in your life that you’ve been running from, hard, for a long time. As you near death, you won’t be able to keep up the fences in your mind that allow you to deny things like that. If you learn to face these things long before you get close to death, then death is less scary. And if there’s something you’ve done wrong that’s been a burden on your mind, it can be important to remove that burden before you die. That’s why some religions practice confession before death, but it doesn’t have to be in a religious context if you’re not religious. But the sooner you deal with things like this, the less they’ll hang around and make your death unpleasant.

But the biggest thing I have found, any time I’ve even faced the possibility of death. Even if I haven’t come close enough to feel that gravitational pull. Is that it’s forced me to examine what is really important in life, and what is trivial. And it’s actually pretty simple:

Love is all that’s important. The experience of love, the expression of love, living love and compassion as your highest and only principles in life. Living for what you can do for others, not what you can do for yourself alone. Everything else fades into the background.

I can remember an ambulance ride after aspirating stomach fluid. When that happens, you don’t know how long you’ll survive. You could get an infection and get over it, or it could do you in within a week. You don’t know if you’ll get lucky, at that point. And everything narrows down.

At that point, I always find myself faced with one question: “Have I loved enough, and have I expressed that love enough throughout my life?” Everything else falls away. That’s the only thing my conscience cares about in the end. Have you lived your life as a strong enough expression of compassion and love? The best way to have few regrets when you die is to get started living that love right now. Easier said than done, but worth the struggle.

This doesn’t mean becoming touchy feely and hugging everyone you meet. It doesn’t mean being serene and peaceful all the time, or never getting mad. (In fact anger is sometimes — sometimes — an expression of love at a particular moment. Not habitual anger problems, but anger as a reaction in a particular situation when everything fits together in a way that requires it.) Love is an active thing that requires constant evaluation and action. It’s not holding hands and singing kumbaya. It’s not feeling soft and fuzzy all the time. Expressing real love can be fierce and intense, difficult and demanding, even scary sometimes.

But if you want to have as few regrets as possible at the time of your death, it’s best not to wait: Get started living a loving life right now. And start facing things you’re trying to run from. And unburden your conscience from anything that’s been weighing on it. Because you don’t want to die terrified, fighting against yourself, feeling the pressure of unrelenting guilt or shame. It’s best to live your life now in a way that will leave you with no regrets when you die.

But that’s a hard thing to do. I’m aware of this stuff, but I can’t claim to be living the perfectly loving life that I want to be living. I know there are things I could be doing for others, right now, that I desperately want to do for others, that somehow never get done. Despite that, I know deep down in my bones that love is the only way to live a good life or die a good death.

It’s hard for even disabled people to talk about what a good death looks like, because we are under so much pressure from society to accept that death is better than disability, that death is an acceptable alternative to the unbearable suffering that we are supposedly enduring, that we will be happier dead than alive. The media is full of stories where nondisabled people kill us and we’re said to be better off, our deaths are said to be understandable. And stories where we become suicidal and instead of trying to prevent our suicides, our societies rally behind us to give us a ‘right’ to an easy death. That stuff is everywhere, and it makes it very hard for us to look at what a good death would actually be.

It’s especially hard to talk about accepting death, because people are always pressuring us to accept our deaths long before we are ready to die. I would quite possibly be dead already if I hadn’t had a lot of the online disability community fighting for me last year, when doctors tried to persuade me not to get a feeding tube. (They couldn’t deny it outright, because they knew I needed one. So they came into my hospital room every day while I was sick and weak and exhausted from pneumonia, and tried to persuade me that life with a feeding tube was so awful that ‘the alternative’ would be preferable.) I clearly disagreed with their assessment of when is the right time to die, and I disagree with anyone who tries to make it sound as if living with a feeding tube, on a ventilator, or with other ‘artificial’ means of living, is somehow the point at which disabled people should give up and die.

But there is a point when giving in isn’t a bad thing. And it’s not a matter of how many machines you’re on to keep you alive. It’s not a thing that can be quantified. It’s that nebulous time “when your time has really come”. At that point, there’s no shame in giving up the fight, because fighting when you’re truly beyond death’s event horizon just makes death more unpleasant, it doesn’t keep you alive. But I’m afraid to even say this, because I know someone, somewhere, will twist it around and use it to persuade disabled people to give up and die before our time is really up. It happens all the time, and disabled people have every right to be extremely wary of talk of ‘giving in’ as a good thing.

But regardless of that, death still has an event horizon. And once you know, for sure, that you’re beyond that point of no return, then there is nothing wrong with simply surrendering to love, surrendering to the light, surrendering to whatever gods you do or don’t worship, whatever you want to call it, however you see it. And you will become part of the rest of the world, and that is right, and true, and beautiful. And heartbreaking for those you leave behind.

Between my experiences lately, and serious medical experiences my parents have been having, I’ve been thinking a lot about death.

Normally, I write about the ableism involved in pushing disabled people towards our deaths. The ableism in thinking that disabled is just half-dead and that dying is good if you’re disabled. The ableism in thinking things like “They keep people alive too long these days, it’d be better if people just died without a long drawn-out time where they’re disabled before they die.”

But now, I’m writing about a different aspect of ableism and death: The way ableism against disabled people is tied to nondisabled people’s fear of sickness and death and physical imperfection, fear of their own mortality. And dismantling fear of death dismantles that aspect of ableism. Nothing I say here should be taken as supporting ableist ideas about how disabled people should just accept our deaths and go quietly. Instead, I’m talking about a more universal acceptance of death, one that should happen when our time has truly come and not before.

And I’m talking about love, because I deeply believe, more deeply than ever, that love is the only thing that can make things right in the world. Love that comes from the depths of what it is to be a person, love that comes from everything good in the world, love that demands a lot of us and changes us and is intense and powerful and fierce and real and sometimes demanding and scary. Love that leads to compassion that leads to actions people undertake for each other, not for ourselves.

And most of my sense of this love comes from my encounters with death. I don’t know why it works like that, but it does. I’ve talked to others who have had similar experiences. Sometimes facing your own mortality can make you scared and twisted up and angry and bitter. But sometimes it can open you up to new depths of love and caring about others, that you didn’t know were possible. And even if you start out scared or angry or bitter, it’s possible to change bit by bit, more and more towards enacting that love in the real world.

I firmly believe that if people were more willing to face our collective fragility, vulnerability, mortality, and death, then we would be less ableist. All of us, disabled and nondisabled.

I’m going to end with a video taken shortly before the death of Eva Markvoort, a young woman who had cystic fibrosis, got a lung transplant, and ultimately died of chronic rejection. I’m posting the video because she so clearly allowed her impending death to open her up to all of the love that the world has to offer. This wasn’t easy for her, it didn’t just magically happen, and it’s not meant to be an inspirational cripple story, which I’m sure she’d have hated — one of those things where we exist only to teach a lesson to the nondisabled world, when we are so much more than a lesson. Yet I hope that we can all face our deaths as well as she did in the end. At least, I hope that I can. When I look at her in this video, I see in my head that invisible solid light that I see whenever I or someone else is sufficiently close to death — it’s all around her, it’s coming through her, and it’s allowing amazing, beautiful things to happen to her and those around her in her last hours.

This was her farewell video to the world, don’t watch it without something to wipe your eyes:

 

She once wrote a love letter that read, in part:

When I sit outside on the ferry is when I most believe in love. I don’t know why. Something about the wind makes me feel alive…the seagulls and the sky…whether its sunny and bright or cloudy and grey or nighttime and I’m surrounded by vast darkness…I just feel…FULL. Full of love and energy….almost as though I’m porous and the wind soars through tiny holes in my body and I’m part of it all…the earth and the people and the relation of everything with everything…as though I don’t matter…but its not scary…its wonderful….i feel so free.

It’s the only time I’m not afraid to die. Cuz I can feel the wind and I know that I’ll always be a part of life…and the love and energy that are contained in my skin will be let loose into the wind and the world will just know how much I care and love and I will live forever. I believe that love is what defines us as human. I believe that my love for you will never die. My heart breaks to think of how lucky I am. How happy and hopeful and full I am. I love you so solidly. I am real and you are real and I hope we will always be real. I am in awe of you. My interest in who you are is infinite. Drop a stone in the well of my desire for you and you’ll never hear it hit the bottom. You amaze me. Your love makes me invincible…no not invincible…immortal. Because when I die I believe my love for you will surround you till your soul joins mine in the wind.

I hope that the world can learn to overcome the terror they associate with fragility, imperfection, vulnerability, and mortality, the terror that currently makes so many people fear and hate disabled people (and, in turn, drive us closer to an untimely death).

I hope that the world can stop fearing death, and stop fearing the disability and sickness that reminds them of death.

I hope that people will understand my meaning here, and not use it to justify the deaths of disabled and chronically ill people who need all the help we can get to survive already.

I hope that the world can learn to love — in the active, difficult, demanding way that deep love entails — and that this can further all of the above. Because active love and compassion, caring about each other on every level possible, is the only thing that digs deep enough to create lasting change.  And love is the only thing that can end fear or hatred.

Blogging Against Disablism Day, May 1st 2014

After this, I am never again putting up with bullies telling me that my medical conditions are imaginary.

Standard

After my diagnosis of adrenal insufficiency, then the last foothold that bullies had made into my mind, it fell away like sand.

It wasn’t just that the diagnosis was so obvious, so grounded in specific laboratory tests that nobody with any knowledge could argue with.  It wasn’t that, so much, at all.

It was what I felt in my body.

It was the way I felt life returning to my body.

It was the way I felt sturdy rather than fragile.

It was doing forty jumping jacks in a row, fast.

It was going up seven flights of steps to use a treadmill for ten minutes, then go all the way downstairs, and then back up to my apartment.

It was doing things, large and small, that my body couldn’t do before.  Couldn’t.  Not even a little.

It was feeling that fall away from me again, temporarily, when my body first adjusted to the dexamethasone dose I was on, and having it come back again when we raised the dose.

I realized that the reason the bullies got to me so badly was because deep down I thought maybe they were right.   I’d experienced a severe but undiagnosed chronic illness for years, and it had gotten much worse six years ago.  I painstakingly hid as many aspects of it as I could, let people believe there were other reasons that I could do less online, because every time I described an illness, I’d get bullied for it.  I’d get told I was making stuff up for attention.  When I was hospitalized last year, I sought help online with obtaining access to a life-saving treatment, and some bullies even had the nerve to capitalize on a life-and-death medical situation to give them a platform to denounce me again.  Then when I described the situation, one of them had the extra nerve to come here and tell me that because I was fat, I couldn’t possibly have enough eating problems to need a feeding tube.  (I’ve lost nearly 70 pounds involuntarily.  When it was only 40 pounds in 2 months, a doctor told me I was burning muscle and that it was going to affect my heart.  Do I have to be dead of starvation before I’m thin enough for my gastroparesis to be real?)

And on some level I accepted this.

And I accepted it because I thought that maybe I really was imagining things.  After all, I had no firm diagnosis for this mystery illness that was causing me so much trouble.  Maybe I didn’t want to get better.  Maybe if I just wanted to enough, I could jump and run and walk up stairs.  Maybe I didn’t have to be in bed all day.  Maybe the vomiting and burning hot and freezing cold and total limpness were something I could make go away, with everything else, if I wanted to enough.  Maybe I was somehow making it up, and then fooling myself into thinking I wasn’t making it up.

And I can tell you that nearly everyone I talk to with a hard-to-diagnose condition has thought this way.  But those of us who have been bullied or harassed, and had rumors spread about us that we’re faking everything?  We think this way more.  We may hide it well, but most of us think this way, at least on bad days.  And it’s a terrible way to think.  It winds around your head and makes it hard to take any action at all in life.  It makes you doubt the deepest things about yourself.  It can make you passive, it can make you lash out, but either way it makes you less effective at anything you’re trying to do.  It’s hard to get anything done when you’re divided against yourself, doing the bullies’ work for them.

Anyway, this has all changed.

I don’t think like this anymore.

The test results tell me that everything I felt wrong with my body all these years, has a measurable, physical cause that’s very simple:  I don’t make enough cortisol, because I don’t make enough ACTH.  Years of depletion has led to chronic and even life-threatening illness.  And this is clearly adrenal insufficiency (a medical diagnosis), not ‘adrenal fatigue’ (a vague catch-all that requires no actual proof of an adrenal problem at all).

But it’s not the test results.

It’s what I feel in my body now that I’ve gone on dexamethasone.

It’s being able to run and jump and climb stairs and go for long walks.

It’s feeling sturdy for the first time in years.  It’s feeling the fire of life course through me for the first time in years.

It’s realizing I could live to old age, and starting to wonder what it will be like to have grey hair and wrinkles.

No bully can take those realizations away from me.

And the change that has happened in me makes me realize how disgusting this form of bullying is, and what a low form of humanity anyone is who deliberately participates in it.  And I’m angry.  It’s an intense, focused anger.  Focused on everyone who has ever tried to make me doubt who I am and what I am experiencing.

Because I have a better fucking track record than most people with chronic illnesses, when it comes to having things show up on actual test results like this.  And yet every time, every time I have to prove myself.  Sometimes the proof comes at the last minute.  One day the proof may come too late to save me, and you’ll have that on your conscience, if you even have a conscience.

But seriously:

Problems urinating, dismissed out of hand as psychological in 2000, diagnosed around 2006 as spasticity of the urethra, treated with an implant that helps my muscles relax.  But not before I had infection after infection after infection.

A variety of really nasty symptoms, dismissed out of hand as being ‘fat and lazy’ and other things of the like, for years.  By the time, around 2003, that they found the problem, my gallbladder had not only produced two large gallstones, it had failed completely and was sitting in there dead by the time they pulled it out.  The surgeon was visibly angry at everyone who had delayed diagnosis and treatment.

Breathing symptoms.  Got me thrown out of emergency rooms more than once because treatments for asthma didn’t help — cyberbullies then proceeded to use those stories to convince people that “even ER doctors think she’s manipulative, see?”  They never thought to check if it was something other than asthma.  Eventually they found an infection and atelectasis in part of my lung.  Even after that was fixed, I was getting told that my continued breathing problems weren’t a big deal, were all in my head, all that kind of thing.  Until I got assigned a new pulmonologist, who did a CT scan and found “mild bilateral lower lobe bronchiectasis and scattered peripheral tree-in-bud opacities consistent with small airways disease”.  When treated for bronchiectasis, the problems got significantly better.  Imagine that?

I had ongoing joint pain that I knew wasn’t arthritis, so I avoided telling doctors about it because I didn’t want to tell them about one more thing wrong with me that didn’t fit in the usual box.  Finally a doctor badgered me into admitting that I had joint pain, then had me perform a series of movements.  He diagnosed me with benign joint hypermobility syndrome on the spot — a condition that’s characterized by overly flexible joints combined with widespread joint pain.  The test is really simple.  Bullies claimed I was faking this even though I posted pictures of my thumb flat against my wrist, which is impossible to do without a hypermobile wrist joint.  (I can also stick my foot behind my head and other fun party tricks that I really shouldn’t, medically, do.  But I do do it sometimes because it’s the fastest way to prove to a doctor that I’m not kidding around about being hypermobile.)

I had ongoing problems with nausea and food that stayed in my stomach for way too long, sometimes I’d throw up things I’d eaten days before.  This was eventually diagnosed as gastroparesis, using a test where you eat radioactive eggs and they test how slowly it goes through your stomach.

And now I’ve had this baffling array of symptoms, for years, and the blood cortisol test, ACTH test, and ACTH stimulation test confirmed that it’s a severe secondary adrenal insufficiency.  My response to treatment, according to my endocrinologist, more than confirms it.

How many people with chronic illness can say they have a track record this good?  Of saying they had a medical problem, and having it actually show up on a test in such a clear fashion?  I mean, the problems I have tested as having have not by any means all been the problems I was expecting to have.  But they all eventually showed up as something.  And that’s more than a lot of people can say.

So why the extensive bullying about being fake, when I have more proof of my authenticity as a sick person than most sick people will ever have?

It’s not because there’s any actual evidence that I’m faking anything.  It’s because bullies will be bullies, and they sensed this as a vulnerable point for any person with a chronic illness.  It’s because, I’m sure, a few of them have actually convinced themselves that they are on a righteous crusade against evil, and I am evil.  It’s because I have some people who, for reasons unknown to me, really hate me, and they thought this would be fun.

But it’s also because there’s a cultural norm that says that disabled people are all potential fakers until proven otherwise.

It’s because everyone is always looking for whether the wheelchair user can wiggle her toes, whether the blind man picks up a book and reads it with his eyes, whether the nonverbal person can say a few words here and there when xe’s under sufficient pressure and all the stars align just right.  It’s because people believe that we are all getting away with something.  That disability is about getting something for nothing.  That being sick means getting special privileges.  That everyone would fake illness to ‘play hooky’ from life, if there wasn’t constant vigilance against the possibility.

Governments love to spur on this kind of hatred and suspicion.  Disabled people in the UK right now are afraid to leave their houses because hate crimes have risen.  And the hate crimes have risen as a result of a media campaign saying that disabled people are exaggerating or faking their conditions in order to get benefits that they don’t deserve.  People are afraid of getting beaten up in public, because they’re being scapegoated by the government for the financial crisis that’s plaguing the world today.  And disabled people are always among the first to get scapegoated for such things.  We’re too expensive.  We need too many special privileges.  This always happens, and horrors follow.

According to Paul Longmore in Why I Burned My Book, the idea that you need to watch to make sure disabled people aren’t cheating on our benefits goes back to the English Poor Laws.  I wish I had my copy of his book on hand so that I could tell you everything he knows about the subject.  But basically it made it clear that there were poor people who deserved help, and poor people who didn’t deserve help.  And that we needed to always be careful only to be helping the right people.  And that the wrong sort of people would always be trying to take advantage of our charity and goodwill, so we must always be on guard.

And that attitude is what’s behind the suspicion of any disabled person who isn’t 100% stereotypical.

Speaking of which — you want to find a disabled person who is faking?  Find someone who has absolutely consistent abilities that never waver in any way, who is always able to do the same things, always unable to do the same other things, and those things never shift around.  She’ll be very much like the stereotype of whatever condition she claims to have, and won’t deviate in the slightest.  She will be everything you expect of a disabled person.  And that is why you will never find her so you might as well give up looking.

The people you pick on relentlessly as fakers are the ones who are generally actually more typical of disabled people, but less stereotypical.  We don’t have just one condition, we have two or three or four at minimum.  Our abilities are a moving target that we can’t always predict, let alone anyone else.  We seem to be able to do one thing but unable to do something else that we “should” be able to do if we could do the first thing.  We don’t obey any of the rules people have in their heads of how disabled people are supposed to be like.  And because of this we are vulnerable and because of this we are targets for relentless bullying, harassment, and defamation.

So a lot of us hide things that aren’t stereotypical.  Or we hide how bad things are.  Or we hide how bad things have gotten.  Or we try to play the role of a more stereotypical disabled person, hoping it will free us from bullying.  But then if we are exposed as having hidden anything, ever, or pretended anything, ever, then bullies have ammunition to accuse us of faking, and it all gets worse.  So we’re trapped in a double bind:  There is no way to be ourselves and escape ableist bullying.

I realize how much I have come to accept that I am an acceptable target, when I think of a good friend of mine and what would’ve happened (and it almost did, but for a twist of fate) if she’d met up with the same bullies I met up with at a certain point in my life.  It makes me shake with rage.  It makes me cry.  The very idea of her having to go through this makes me furious.  And I realize that I need to be just as furious that I’ve been forced to go through this, often with very little support and backup, for so long.  Because I matter just as much as she does, and I’m just as real as she is.

I have to say, though, that I have met people who were faking or exaggerating disability in order to manipulate people.  Very few, but I have met them.  And I understand that when done in certain ways, such actions can be devastating to everyone forced to be around them.  It can destroy trust.  It can destroy the cohesion of communities that are important for disabled people.  It can become an almost vampiric scenario where someone is draining time, energy, and money from people who can’t spare any of those things.  That isn’t what happens the majority of times that people fake things (the majority of the time, it hurts few to no people, actually), but it can happen, and I understand why people are changed by it, why they have trouble trusting after something like that happens.  I’ve been through it myself and it left my head upside-down for a long time afterwards.

But I’ve seen much more damage done to disabled people and our communities, by people who are overly suspicious of everyone for faking, than by people who are actually faking things.

In fact, I’ve seen irreparable damage done to disabled people simply at the idea that someone might think they were faking.  It’s an insidious thought that gets into people’s heads and won’t let them go.  It’s torturous.  I wouldn’t wish it on my worst enemy.  And I’ve seen it all but destroy a lot of very good people who’d done nothing wrong.  And these aren’t even people who were directly targeted for ableist bullying the way I have been.  All they had to do was see that the bullying happened, and that was enough to instill fear and self-doubt.  Many people with disabilities and chronic illnesses are dealing with so much self-doubt already, that bullying and witch-hunts simply pour gasoline on the fire.  I would not be surprised if some people who were already feeling they had no hope of being understood, had been driven to attempt suicide this way before.

My self-doubt is gone.

It was like a fog that kept me always looking in the wrong direction.  It made me unable to see myself.

I can see myself better now.  I am strong.  I am as real and genuine as everyone else.  I have done nothing that deserves being singled out and attacked.  I have far more proof of the reality of my medical problems than most people who are not being targeted have of theirs, and that tells me that I’m not being attacked because of anything I’ve done.  But I can see, clearly, that I am stronger than anyone who has ever tried to attack me.  Because I’ve now survived relentless attacks on my character, death threats, emotional manipulation, and head games.  Things they probably wouldn’t have weathered anywhere near as well as I have.

I don’t have any hope that they will stop what they are doing.  Because I can see now that what they are doing has nothing to do with reality.  No amount of proof is enough.  In fact they probably want me scurrying around trying to prove myself.  They enjoy that.  Because what they want is control over my life.  They want me to be scared and running around frantically trying to please them.  I’ll probably be dealing with this until they get bored or something, if that ever happens.

But there are things we can do to minimize the impact of people like this.

We can make it a community norm that it’s intolerable for people to bully each other about their disability status.

We can support people who are being bullied about their disability status.

We can support people who are not directly being bullied, but who express fears about whether their illness is imaginary, whether they are just somehow making things up without knowing it, that kind of thing.

We can make things safe for people to admit to feelings like that, without condemning them as guilty just because they’ve doubted themselves.

We can work against community norms that say it’s really important to catch disabled people “cheating” at being disabled.

We can make sure bullies know we aren’t listening to them, and we can make sure that their victims (both direct and indirect) know that we are on their side (because there’s nothing bullies love more than to make their victims feel as if we are alone and everyone is against us).

We can work for love and compassion and against one-upmanship, bullying-as-funny-entertainment, and ego.

There’s all kinds of things we can do.

And inside of ourselves, we can dismantle this self-doubt.  Because self-doubt of this kind, it’s what this kind of bully wants.  They don’t just want to make other people doubt us.  The real fun comes from watching us squirm, watching us doubt ourselves, watching us tear ourselves apart.

I for one will never tear myself apart over this again.   Because I know now, know in my bones, that this has all been real, all along.  I feel it every time I walk up and down four flights of stairs without my legs giving out or even getting out of breath.  I feel it every time I exercise without vomiting.  I feel it every time I do jumping jacks, run, skip, and do all these things I couldn’t do before.  I feel it in the fact that I never anymore get so exhausted that I need a bipap to breathe.  I feel it in every single change my body has made since starting dexamethasone.  This is what reality is.  Anyone who thinks otherwise can screw themselves, but you won’t get a voice on my blog, not to tear me apart, and not to tear anyone else apart either.  It’s what Dave Hingsburger taught me years ago:  I’m okay, you’re mean.  That’s all I need to know.

Blogging Against Disablism Day, May 1st 2014