Tag Archives: experience

When Orange Speaks Louder Than Words

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When Orange Speaks Louder Than Words

Mel wearing an orange shirt, dark glasses, and a brown Aussie hat.Fey and Mel nuzzling faces while Mel wears an orange shirt.Mel with only hir torso and arm visible, wearing an orange shirt with an orange crocheted shawl hanging off hir arm.An orange crochet project sitting on Mel's lap, bamboo yarn with a lot of shell stitches that is going to become a cardigan, with a metal crochet hook with a green handle.

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

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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?

A bunch of stuff that needed saying

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The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

What I mean by “beneath” words.

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I was trying to explain to someone what it meant when I said that I spend  so much time “beneath” words, and have to climb up to them from below. And it hit me that I could depict all of the different layers I go through one on top of the other. I once depicted them (but not all of them, and not showing them as layers) before, so I already knew some of how to do this. I used cut out pieces of construction paper to do the top six layers, and paint for the bottom two.

underwords

I’m numbering the eight layers from bottom to top, but describing them from top to bottom. So I am going to start with the eighth layer.  Also these are the layers for written language specifically. Some of them do correspond to spoken words.  

The eighth (top) layer shows the words, “Don’t you know another”. It could be any words, but after not having a clue which to use, I chose the start of a sentence that a guy in an emergency room told me when I was a teen, after I was picked up very overloaded in public and humming one tune over and over to calm down. (He was in that mode people get in when you’ve become unable to talk so they suddenly decide you’ve become unaware of your surroundings too, and they mutter at you in a specific tone that seems to assume you will never tell anyone what they said.) These words represent what happens when you understand the words perfectly well.  

The seventh layer reads “melly doxel rin tunsh”. It represents being able to recognize the sounds a word might make, but not being able to understand their meaning. Whether or not you know that words can have meanings (I didn’t know that when I learned to read, and had skipped over some layers entirely that only became meaningfully separate later).  

The sixth layer reads “ncj fv rztlh xlm hnnc”. This layer involves recognizing the letters as letters, but not deriving sounds from them. 

The fifth layer shows a series of symbols such as circles, squares, zig zag lines, and other shapes. They are arranged as if they form words with spaces between them. This represents recognizing the letters as symbols, but not as recognizable letters.

The fourth layer shows a series of small slightly wavy lines, arranged in a pattern. This involves recognizing the letters as separate things, but not recognizing them as symbols. 

The third layer shows a bunch of joined together lines. This represents seeing and noticing a black pattern on the background, but not really separating out the pieces. 

The second layer is painted. It shows a variety of shapes, some recognizable and some not, some vague and others clearer, all blending into each other and the background. The photo has different colors than the real object due to the flash, for instance something medium green came out almost light pink. There is some loss of the actual multilayered texturing that’s in the real one too.  This layer represents just sort of seeing a lot of shapes and colors and visual textures, and the patterns those things make, and not even noticing the text at all.  Although it’s by nature visual, this is usually happening in all the senses at that point. 

The first layer is gradually and unevenly shaded into by the second layer. It shows a textured black background with a white circle in it. This is when not even sensory impressions make much of a dent in conscious awareness. The white circle is meant to show that even though this may seem completely blank in some ways, it’s not as empty as it may seem. (When things seem totally empty I feel “disappeared”. I did not attempt to draw this, but it would be zero.)

The things I drew were usually somewhat arbitrary. It would be possible to include more or fewer layers, or things “off to the side” that don’t fit into a simple sequence. I drew this to communicate a basic idea, not to do a perfect representation of everything.  There are doubtless layers above eight too — but I drew this to show what is beneath what most people think is the most basic, not to show all the different levels that fluent reading can take.  

Anyway, in different people who experience all these layers, things may work differently. For instance someone might live in the sixth layer, climb to the seventh layer easily, climb to the eighth layer with more difficulty, fall back to the fourth layer during ordinary shutdown, and the second during more severe shutdown. Such a person will have a very different experience of each of these layers than I do (for instance viewing the second layer as total confusion instead of comforting, familiar, and easily navigated).  And a second person may live in the sixth layer also but never make it to the eighth and have great difficulty with the seventh. And someone else may live in the fourth, and climb to the seventh easily by skipping the fifth and sixth altogether. 

I generally live in the second and first layers. This is where I am comfortable and have the widest experience navigating. I have a lot of experience built up there and it isn’t disorienting.  There are things that can disorient me during shutdown but they aren’t part of the scope of something about reading and are hard to depict. And then there’s layer zero during shutdowns. 

Climbing up to layer three and four can be done with some effort. It’s not always possible but it’s easier than the things above it. 

Layer five has a barrier that takes much willpower and effort to push through. Layer five is when things become pretty painful. It’s like each time I look at a symbol and recognize it for one, it burns my brain and squeezes on other aspects of thought until they run off and hide. 

There is a similar thing that can happen to me when at a similar layer in perceiving my surroundings in general. For instance, I might pick out anything circular in my surroundings and each circle I see hurts my brain the same way.  And in listening to my environment, I will generally pick out a really annoying and short musical rhythm or tune from the sounds around me, and hear it boring its way into my ears over and over. 

Past that barrier, things might be hard but nowhere near as hard as going through that barrier is.  Sometimes I go to the sixth level and sometimes I skip it and go straight to the seventh. 

Between the seventh and eighth there is another barrier. Not as big as the barrier between fifth and anything below it, but still recognizably difficult. My guess is that’s because putting actual meaning into the words is very different from, say, matching a set of sounds to a set of visual squiggles, which is just pairing one sense with another without having to match it to concepts. 

(The concepts themselves are usually not one word at a time. It’s more like, what set of words goes the most often with what set of experiences, and then which patterns of word orders and such go with which others.  And then skip the words you don’t understand (more than you might expect) and take what’s left and hope it makes sense.)

Anyway, obviously most of these layers involve climbing, and some parts of the climb are steeper or more difficult than others. But often I will find that it’s impossible to climb any higher than a certain point no matter how hard I try. Other times it’s impossible to climb because I entirely forget that the higher layers exist. Frequent cutoff points for both of those are between two and three (the point where the text is noticed), four and five (the point where symbols are recognized), and seven and eight (the point where meaning of words is introduced).  

Additionally, most of the time I let go I fall down to at least the second layer if not the first. Sometimes I fall down to the third or fourth instead. But there are two really terrible things that can happen instead. I can get “stuck” in one of the really painful areas. 

Getting stuck in the fifth layer happens sometimes. It’s as if the symbol-recognizing thing in my brain has so much momentum that it takes time for it to stop and drop down to something easier to take. Everywhere I look there are symbols. And every symbol noticed is pain. There is no way to stop this except to ride it out. 

But even worse is getting stuck at the eighth layer. This happens if I read or write too much without falling back to the lower layers to rest. I described this layer as the one where meaning is added. But I meant this only in the sense of matching a set of words to a meaning. I didn’t mean meaning as in meaningful. Quite the opposite.  

When stuck at the eighth layer, there is no escaping the words whether I look at words or not. The words have gotten inside my head.  The meaningfulness that I derive from the second layer is nowhere to be found. Direct experience is nowhere to be found. The only thing to be found is words, words, and words. 

Things go orange or yellow (the two most painful colors) and flickery, accompanied by an equally flickery ringing in my ears, and a dry burning all over my body.  And inside my head all I see or hear are words. Flickery words. Buzzing words. Words. Words. Words. Words. Words. Repeating like that in an endless loop.  And the terrifying emptiness that to me seems like the essence of what words and all other abstractions are (yes I am a writer with a loathing for words).  

The longer I try to do something like read to take my mind off the flickering, the worse it gets and the longer it takes to go away. Time seems infinite at times like this. The only thing to do is suck it up, lie down in a dark quiet room, and tough it out until it either disintegrates or I fall asleep.  If I’m awake, I gradually experience more and more periods of dark quiet, until finally the humming flickering wordiness dissipates. Usually at that point I’m exhausted and possibly have been frozen in one position for hours. 

I can think of very few experiences I like less than becoming stuck in the eighth layer.  I would far rather deal with shutdowns where nothing I can’t feel/see/etc. exists and I keep hitting layer zero and vanishing from my own awareness. 

Another important thing is that people operating at the same layer are not necessarily experiencing the same thing. My ability to read means I can operate at the eighth layer despite living at the first and second most of the time. Another person might live at the eighth. Another person might live up at some sort of eleventh layer I haven’t got into, and be experiencing the eighth due to shutdown. The person who lives there will be the only comfortable one. I will be uncomfortable because I am greatly stretching my abilities and hanging by my fingernails. The person from the eleventh layer will likely be distressed and disoriented because their usual abilities are gone and they don’t have the long experience functioning in that layer that someone who lives there does. 

This is one reason I find it really offensive when people assume that every person who can read and write (at least some of the time) has identical experiences. That assumes that everyone who can sometimes get to the eighth layer lives there, doesn’t understand the other layers that come before it, and can always get there. It’s not that simple. It’s not even as simple as the picture makes it look (and this picture is only about reading!). Life is quite a lot more complicated than that. 

So that’s my simplified guide to what I mean when I talk about living “under” or “beneath” words. Similar but not identical things apply when I talk about what’s “beneath” certain kinds of thought, perception, movement, etc. Oh and generally writing something this long puts my reading at layer seven at best, which is one of several reasons I can’t easily proofread, summarize, remember what I wrote, or do various other things.

The Summer Thing

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I want to start out by explaining what this is, and what this is not. Blog carnivals tend to bring in unfamiliar readers. People tend to misunderstand topics like this one. So here goes:

I write about things like this mostly because nobody was talking about these things when they happened to me. I want people who are going through similar things, and those around them, to have a frame of reference I never had. I also want to end the taboo that says only bad disabled people talk about our bodies and the things that have happened to us. The one that says all such discussions must be a plea for pity or attention. So if you get only one thing straight, it’s that this isn’t about getting sympathy, it’s about describing a piece of reality.

This is for the disability blog carnival. The theme is relationships. It might take awhile to explain how it fits into this theme, but I’ll get there in the end.

I have always experienced the world in ways that mesh up with neither language nor most people around me.

Body perception is one of those things. Internal sensations feel external. My brain also doesn’t prioritize them in the usual way. Once, when on neuroleptic drugs that only amplify this problem, this happened:

I was pouring water from a large bucket, onto an electric fence. I slowly realized something was different — no, bad — no, very bad — and hang on, it seems to be in the vicinity. And colored bright white, and… oh yeah, painful, and pain has something to do with my body (???), yeah it does, but where on my body, …, …, …, …, …, arm. My arm is a part of me. Let me turn my eyes on. Now look at my arm. Stuff on my arm. Stuff… water. Where is the water going? Fence. Electric… oh. Better stop this. Where’s the arm again? Got to move it. (Wait for those instructions to mosey down into my arm.) There. Phew.

But even without neuroleptics, connections like that can take even longer. I was lucky I was old enough to make such connections on my own at that point.
 
That level of detachment from one’s body can happen in autistic people and can happen as a neurological response to a kind of pain that’s existed as far back as I can remember feeling my body at all. So it’s hard to say if it’s one or both that caused that kind of thing.

So I am trying to give enough background information that when I start describing certain kinds of childhood experiences it will make sense. It’s hard because as usual the English language wasn’t built for the sorts of things I’m trying to do to it.

When I was a kid, I sometimes considered myself bad. Other kids didn’t scream, cry (the noisy out of control kind), or lash out when cornered by bullies. I felt like I was always in trouble. Even bullies got higher grades (and even sometimes awards) in citizenship. There was something about this that had little to do with social skills, though. I had no words for it, but in my head it was always connected to summer.

I experienced it as external. The sky existed, the black stuff on the ground existed, and the summer thing existed. Like the sky and the black stuff on the ground, the summer thing covered a wide area. But unlike them, it truly seemed to be everywhere.

It got a little less if I pressed body parts into cold, smooth surfaces. It got a little more if I was stressed out or having to process more information. But otherwise, the summer thing changed in ways I could never predict or explain. The worse the summer thing was, the more “bad” I was, and the less I could relate to people (including myself).

When the summer thing got bad enough, all I could do was cry or scream, or sometimes just sit there encased by it. My dad told me later that I used to scream or cry for no reason. My dad didn’t know about the summer thing.

Nearly always, I felt like I was cut in half. Half of me was in the clutches of the summer thing. The other half floated somewhere distant and numb. I tried my best to increase the numbness however I could. Half numb was better than none of me numb. I spent a lot of my “free” time finding ways to distance myself from the summer thing. When I had to use the most effective of those techniques in public, people accused me of having a creepy thousand-yard stare.

Not surprisingly, when I ended up in the hands of psych professionals they saw “severe dissociation”. They spent lots of time trying to connect it to physical abuse and molestation, but those things were barely a blip on my radar compared to the summer thing. Eventually they decided I was just biologically set up to dissociate easily and that I used it to deal with boredom. Even though in reality I was almost never bored and almost always the opposite — overstimulated and overworked.

The funny thing is that pain psychologists teach patients with severe pain the same techniques I discovered on my own. But when they teach it they call it adaptive. Every time I go for a nerve block, they have someone there to walk me through the same techniques my body discovered before I knew I had a body. Because severe pain is exactly what the summer thing is, and professionals consider dissociation under those circumstances more adaptive than pathological.

When I was 15, the doctors put me on Neurontin for seizures. This made the summer thing fade a fair bit. Either I couldn’t describe it well, or they didn’t know Neurontin treats several kinds of nerve pain. Because they told me if something went away on Neurontin it must be a seizure.

When I got off Neurontin, the summer thing came back and pretty much stuck around until my early twenties. At that point I’d spent three months mostly writhing around on the couch before a friend said “This is how pain makes a body act, go to a doctor.”. I went to the doctor and she put me on Neurontin pretty fast, which helped both the pain and the seizures. I’m now on a Lyrica/Trileptal combination that deals with the summer thing, the seizures, and trigeminal neuralgia all at once. But even once I first got on meds, the spot that had formerly occupied “1” on the 1-10 pain scale now occupied a “6”. Which is a huge change.

It was only after treatment I could begin to either describe the summer thing itself, or differentiate lots of smaller pains that it blocked and distorted. Synesthetically it’s dots and streaks of brown, orange, yellow, and white. And what it feels like? Burning, both burning hot and burning cold (like I’ve been told liquid nitrogen feels like). And prickly. And like my skin has been scraped raw, gone over with sandpaper, and then sunburned. Hence “summer”. And like… if I had heartburn, for instance, instead of feeling just the heartburn in one spot, I would feel like someone had put an iron on my entire upper back that was red-hot and ice-cold at once. I only got treated for a lot of other lifelong conditions after the summer thing had been treated enough to feel them.

From what I’ve heard, even people who never had pain or communication problems before developing something like this can find it hard to describe. They’ll end up describing limitations on their functioning, or use torture metaphors, instead of describing pain. Because pain that they are used to feels like a whole nother category than this. It just doesn’t feel like it ought to have the same word. So maybe as a person who never knew life without it and who had communication problems I can be excused for not even knowing I should describe it, let alone knowing how, until that first dose of Neurontin made it lessen.

What’s the actual name for the summer thing? From my descriptions, people have told me it’s some kind of neuropathic (nerve-related) pain. But whether it’s originating in my brain or somewhere further down the line isn’t something they can tell with current tests. And since it began so long ago, nobody knows if it’s a function of an injury, or the way my brain or nerves happened to grow, or some early neurological response to overload, or what. It’s also important to realize it’s not gone. It’s just less than it used to be.

Now there’s enough background laid out that I can talk about how this thing has affected relationships, which is the whole point of this blog entry in the first place.

The first relationship the summer thing interfered with is my relationship with myself. On both a psychological and physical level. How do you form a relationship with yourself when the more connected you get the more it hurts? I spent most of my time trying to edge as far away from myself as possible. One of my early memories involves trying to imagine the world without me in it, and getting aggravated that no matter what I imagined I was always the one imagining it. If I got anywhere near my body or mind I would get overwhelmed by this blast of pain and retreat if at all possible.

If I picked up a Lego block, my hand felt a burning, scraping afterimage for hours. Touch from humans created a different afterimage. Sometimes I would put up with these things and sometimes I wouldn’t but it was never without a price.

When pain gets severe enough, it does weird things to your thoughts and feelings. A lot of the anger and fear that made me “bad”, stemmed from the summer thing. The only way I could get calm was by identifying with my numb side. And the problem with the numbness was that it went away the moment I felt into my body to either move it or interpret what was coming through its senses.

So imagine I am lying curled up in bed, losing myself in the dark brown bedrail. Then someone comes in and wants a response. If it’s a good day, I may be able to imagine the response without any unpleasant feelings attached. But even then, most of the time I ended up snapping at the person for no good reason they can see, and for no reason that I can understand. Predict, yes, but understand, no. I often did an aggravated hiss my mom called “lizard breath”, but I wasn’t in much position to understand or explain the irritability. (And pathologized as I was sometimes, I shudder to think what a modern therapist would have diagnosed the irritability as part of, or treated it with. I have some good guesses.)

So I end up becoming a really grouchy person with no idea how to avoid being grouchy, and this becomes one more thing to hate about myself. As usual at that point, I had no idea how other people avoided snapping, stomping, hissing, growling, and generally being disagreeable. And knowing I was. And not knowing why, or how to avoid it.

I also learned an awful kind of strength. I was always expected to do things people in that level of pain don’t normally do. And even if I did not learn to do those things, I learned to exceed the expectations of someone in that kind of pain. I didn’t think I had a choice. When I failed, I beat myself up harder than anyone. I learned to push myself until collapse.

To this day, this makes it hard to admit when something is wrong, pain or otherwise. The stuff I do admit to is the tip of a large iceberg. I try to talk about these things because I believe it is very wrong to teach people it’s wrong to discuss them. But I am fighting the training that taught me to press on no matter the difficulty. Because the result of pressing on is almost always dangerous, sometimes deadly. Even though I know this, it is almost always other people who threaten and cajole and drag me to the doctor or hospital when something is wrong. Because growing up this way has also messed up my relationship to my health.

The summer thing also sometimes has made me seem weak, not strong. Those times when I could do nothing other than curl up and cry, or hit myself, or zone out as far as I could. Try explaining that when you don’t know what’s going on, and don’t know fully how to connect words to experiences. That one affects relationships by convincing people you are weak-willed or bad somehow. And so do you because you don’t understand the forces behind these problems. Especially when it’s always been there so it’s just scenery.

“Answer me. Why is she lying there on the ground? I’m serious. What are you two up to? I need an explanation,”

(My body had taken over and I was pressing my face and arms into the cold concrete. I kept hearing these high pitched sounds that turned out to be my own voice sort of wailing. And I wouldn’t have had an explanation that would satisfy those guys even on my best day. And how was the person with me supposed to handle always being called upon to explain me? He reads this blog sometimes, so at least he can find out.)

Years after that, I was in a similar situation and eventually asked a friend why my body kept acting like it was in pain. She responded that my body was in fact in pain, and that the reason I didn’t understand my own reactions was the dissociation that goes with severe chronic pain. And that nobody who wasn’t in pain would ask that question. Wish I had had people like that around as a kid.

This of course affected sexual relationships as well. Touch in sexual contexts can temporarily diminish the pain a bit (and a lot of other things, according to a book I’ve read on the science of sex), but only to a point. Try to push anything into the usual orifice, and my reaction is more like a scared wild animal than a sex partner. As my only sex partner found out the hard way.

It’s affected my relationship to any activity I do with my hands. Many activities I used to think I just didn’t like, were things that made my hands feel scrapey for the whole day afterward. Lego blocks are only the first of a long list of things that seemed great until I touched them. It’s why I never use my Zometool set unless company wants to, why I finally got rid of the things.

The summer thing has also created a certain kind of distance in all my relationships. When I am in the part of myself that feels more pain, the pain fills up my head and creates a wall between me and whoever I relate to. When I am in the part of myself that floats at a distance, the floating creates its own distance. This effect has lessened with medication, but it’s still there in some amount no matter what is going on.

Many of the effects on my life I have talked about, are things that other conditions have affected as well. It’s impossible to know which has contributed how much to what, and I have not even tried to work it out. And while I cam sit here and list off things it’s affected, I don’t generally sit around feeling morbid or morose or melodramatic about it. Everyone’s life has constraints on it, mine are just not the same as the usual ones. It doesn’t make me pathetic or pitiful. It just exists and always has. I don’t have to like it, but life’s too short to wallow in misery about it, so don’t get me wrong about my reasons for writing about it.

When I think of relationships the summer thing has affected, it’s hard to think of anything it hasn’t affected. It’s affected my relationships to my mind, my body, my emotions, my family, my friends, people in general, anything or anyone at all in my environment. It’s made it so that my two main vantage points in life have been either scraped raw and affected painfully by any sensation, or else floating numb but too far distanced for direct interaction. It’s a good example of how a condition that isn’t technically supposed to be pervasive, can affect just about every conceivable part of my life. Even though I take every effort possible to diminish this kind of pain, like all events that have left such an intense mark on my past it is something that I have a hard time knowing who I would be now if I hadn’t grown up with it. Life is too complicated to know things like that, and it doesn’t make much sense to ponder an unreality that much.

So that is more of the history of the summer thing than I have ever written. I have gone into pieces of it here and there, but never gotten as much detail as I have just now. And it reminds me all over again how complicated life is, because there is no way to write about everything on even a topic so narrow as nearly thirty years of a very particular condition, let alone any other topic a person might write about. Experience always has more depth than words can (if they are used in even the best way) just point at, even a few seconds of experience. Not that I ever really forget this, but tasks like this one bring it home. And finding anyone with similar experiences (not just to this, but to anything) can create a level of intense resonance that renders words unnecessary after a point. Having almost no such resonance until I was an adult, is why I bother with the task of pointing at experiences in words, and working for years just to get some of them out at all — so that anyone with similar experiences might find such kinds of resonance (or find the words and tools to express it to others), and anyone who knows anyone with such experiences can understand them a bit better. And it works even though no two people can have the exact same experiences. And things like this are how I have formed some of my most rewarding relationships despite the distancing effect of the summer thing. It’s like even if pain sometimes forms a wall, this kind of resonance makes it possible to perceive the other person without having to scale the wall itself. And having those few but invaluable relationships gives me the will to scale that wall in relationships where there is no such shortcut.