autism and depression

Phenomenal post about how Aspies interface with depression in unique ways:

People with Aspergers syndrome may experience depression differently

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I have run out of energy. Again. Just like I did this time last year when they changed my schedule and switched my days off. Except – I don’t have that excuse this time. But I called out of work this past Friday, and three days of rest later I’m not much better.

Every so often, I have been laid low by a mono-like illness with no clinical signs other than extreme fatigue that does not respond to rest and takes about two months to run its course.  It matches the symptoms of chronic fatigue syndrome, only it presents only episodically.  I’ve caught on to how my body presages it, though, so staying home from work this time is my attempt to keep from having to leave for months, instead of just a day or two. The technique worked last year, so I’m hoping it works again.

But reasons for my predicament are harder to come by this time. I ran myself pretty ragged back in December and January, but I’ve since been getting a good night’s sleep and decent nutrition. The thirty-day lag time preceding onset is suspicious. I mean, here I am, relatively healthy, decently-rested, my pain largely under control, and it still crept up on me, and dragged me under like a concrete weight lashed to my waist.

I keep trying to be normal. I keep trying to make the exceptions I need to make to function as a normal, healthy person, a neurotypical person, a physiotypical person. And, clearly, I am not, and it’s the most frustrating exercise, because I can manage it, if I’m firing on all cylinders, if it’s an ideal environment, often for months at a time. But ask just a little bit more of my body, my mind, and I break apart like a jenga tower after the last critical bone is pulled. Only unlike the tower, I can’t lose a whole bunch of them before I topple. It takes perhaps one or two and I hit a wall.

There’s no place in society for someone like me, straddling the line between abled and disabled. I’m not compromised enough to be truly incapacitated, but I’m not functional enough to hold up under the typical, 40-hour-per-week system. And I hate it. Hate, hate, hate. Where do I fit? What do I do? How do I eke out an independent existence in this lonely grey area so few inhabit that to most people, it doesn’t exist? I’m so done with having to be a third type, find a third way. Not well, not handicapped, but somewhere in between.

Is it awful to say that I miss the pain, sometimes? Because as horrific as it was, it provided a clarity that I long for. The pain was so extreme that it extinguished any possibility of a normal job, a normal life.

Now I’m faced with trying to find a job that not only isn’t physically taxing, but can involve working from home so I can manage my energy limitations, and that I will be able to perform despite being functionally autistic.

Even my autism isn’t complete. It’s so awful to say, isn’t it? Because I’m sure that no-one else goes around complaining that they’re not fully autistic. But I’ve had it for so long and hide it so well that I could go through the rest of my working life without telling someone and it likely wouldn’t matter at all. I’d just be labeled quirky or eccentric. Or better yet, blunt. And no-one has any idea the mental drain it places on me to put up that neurotypical front. And even if they do, they just don’t understand it.

No-one gets it, what it’s like to have to expend half again as much energy to process and perform things that come to them automatically. I wish nothing more than for someone to spend a day inside my head, with the constant turning over of different responses, actions, facial expressions, predictions, the angst, the anxiety, the worry over whether I look right or sound right, in order to seem as seamless as they. I can’t speak the way they do, can’t hear the way they do.

And I miss so, so much. You know what I miss the most? Awe. Neurotypicals have such easy access to awe. Their ability to relate, their facility with theory of mind, means all they have to do is see it in someone else to experience it themselves. I have no such conduit. Maybe it’s a good thing; maybe it would be too taxing for me, with my energy insufficiencies, to be able to slide into someone else’s emotional experience with such ease. But I feel the lack, the gaping hole where an experience, an emotion should be.

I’m so tired of people telling me how lucky I am, how fortunate to have the coping mechanisms I do, how blessed to be as talented as I am, and who knows whether the autism contributes to that, and I should be grateful. I am grateful. But I’m also sad. And worried. I desperately want to be independent. Is that too much to ask? I wish I knew. I wish I knew what I was supposed to do. I keep grasping blindly at opportunities, some accessible, some not, some likely, others less so, trying to figure out what I’m supposed to do and who I’m supposed to be. I have never been good at deciding what’s right for me. I’ve always relied on others to tell me. But now I’m an adult and I’m supposed to figure these things out for myself.

But what if I can’t?

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this is why

OK, I’ll admit, I was one of those liberals that didn’t get the Trump thing. While I might not have been as addicted to the daily outrage flung up the flagpole by the media as some, I entertained a lingering, if small, hope that he would do something so outrageous, or better yet, illegal, that he would be ousted and things would get back to “normal.”

But lately, as I’ve had to defer things because I can’t afford them, like a graduate certificate, or buying a home, I’ve started wondering. Why am I clinging to this supposed “normalcy?” What is so great about the way things are going in this country that I am hanging on to them with grim, thoughtless, white-knuckled tenacity?

I mean, yes, government does do a few things, perhaps more than a few, pretty well. My potholes get filled (sorry, Arkansas). My mail shows up on time, every day. My electricity runs without fail, notwithstanding minor interruptions from Mother Nature, a tax for living around lots of trees which I’m happy to pay for the privilege. My meat is safe, my medicines are what they say they are, and my car gets decent gas mileage and will deliver me unharmed from most altercations with other vehicles. Many take this stuff for granted, but I don’t.

But about everything else that interfaces with my daily life, not so much good. People like me like to try to pick things apart into smaller, manageable bits and come at them that way. The opioid crisis. The longevity crisis. The obesity crisis. Food deserts. Minimum wage. Corporate bonuses. Health care.  Like picking fruit off of a tree in hopes the tree will stop bearing fruit.

The problem isn’t the fruit, though. It’s the tree. The way our economy runs and our government’s interaction with it does not work any more. We are suffering from a much larger crisis, that of an entire middle class that has been stripped of the ability to make a decent living. The number of jobs that enable families to afford a house, two cars in the garage, and a stay-at-home mom has significantly atrophied. Even manufacturing jobs, the few that are left, do not pay enough to support a family all by themselves. And as for a higher education, not only is that no longer a guarantee of a better opportunity, but it saddles one with crushing debt. An enormous swath of this country has been priced out of the market of making a living.

And they know it. Maybe not in the way that I can see it, bright lines against a black background, but they feel it. Because there is no other way that people, good people, would hold their noses and pull a lever for Trump, unless they were in desperate straits. They knew what they were getting. None of these scandals surprise them. They just had to send a signal. Something has to change. Not a bunch of little somethings. One big something. And Trump was all they had and so they offered him up. Don’t you get it?  

The New Deal isn’t new any more, and it isn’t a good deal. It’s long past time that people stop saying “Americans need a leg up” – which most of them would eschew anyway – and admit that our whole system is failing and we need to think seriously about scrapping the entire mess and doing something else. If we can’t apply some downward pressure on the costs of living – all of them – fewer and fewer people will be able to afford them, and that is a recipe for dangerous discontent. If something big isn’t done, or if people don’t sense that their government is at least trying to do something – something real, something important, something they can see happening in their own lives – then Trump isn’t an aberration. He’s just the beginning. And there won’t be fewer people voting for him and those like him.  There will be more.  And I might be one of them.

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I am an actress. Ever since I was a little girl, I have imitated other people. Like a mirror, I could reflect was what was seen and spoken to me. I mimicked words I heard and actions I witnessed. To those around me, I appeared normal, but after spending some time with me a disconnect would become apparent, revealing that my speaking, moving being was not imbued with the same type of inner self as those around me. I misunderstood, seemingly willfully, basic human communication. I was ignorant of the norms of social interaction. Inside this realistic shell, something essential was missing, or broken, or, at best, unrecognizable from what was inside everyone else.

I was verbal and literate from a very young age, and dramatic. I loved to read and act out fantasies, and to imagine them playing themselves out in my otherwise mundane and often frustrating existence. I wasn’t like other kids my age, and they made fun of me and didn’t want to be around me. I lived in books, relating to every misfit I read about, who would come to some realization by the end of the novel and suddenly not be such a misfit any more. I waited for that realization to happen to me. I didn’t want to be a misfit, that odd, weird person no-one wanted to be friends with.

The realization never came. By the time I was in high school, my peers actively disliked and avoided me. One girl once said to me: “You always know how to say the exact wrong thing!” and stormed off in tears. I felt horrible, and horribly confused. Why had it been wrong? What was the right thing? I must be doing something wrong; no-one ever stayed friends with me for any length of time. As things got worse, I grew stiff and shy. I always spoke up in class – teachers never seemed to find me in the wrong – but around other people my age, I said almost nothing.

I went to college in the early 90’s when goth was coming into the mainstream. I loved the music and the culture; they matched my increasingly negative inner monologue perfectly. I found a group of people who did not think I always said the wrong thing; they thought the world was a hopeless dystopia and acted like it, which was considered “being real.” (Which, I thought, was all I’d ever done, anyway. I never lied; I could barely manage to soften the truth, hence the lack of friends.) And yet still, I was missing something. Women tried to make friends with me but I couldn’t see it. I thought they just felt sorry for me. I didn’t know what they wanted, or what they meant.

I never seemed to know what anyone meant.

I discovered that alcohol solved a lot of those problems. It dismantled my reserve and suddenly, people thought I was funny. I found a social group – freaks, we called ourselves – that took pride in purposefully rebelling against social norms. I also found I could consume large quantities of alcohol and hold my own – yet another skill they valued. But I took it too far. I fell into addiction, relentlessly chasing that feeling of belonging, into more alcohol, and pot, and harder drugs; into illegal after-parties in dangerous parts of town; into relationships with controlling men who told me what to do, a relief, since I never seemed to know. My old group of friends fell away and I was surrounded by drunks, addicts, and drug dealers. I started self-destructing with vigor. I had never been very good at being a good person, anyway. Might as well take it all the way down.

I caught myself, close to the bottom. I was tired and it wasn’t fun anymore. I quit smoking, drinking, and all the drugs, and dumped the numbers in my phone, cutting off everyone from that life. I started looking for a new person to be and another group of people, and was drawn into a group of local singer-songwriters. I threw myself into the effort of reflecting them, the things they said to each other, the things they did for one another. I was much better at it, by this time. I had built up a volume of correct responses for various social situations. I was a good singer, wrote music, and was funny on a microphone between songs. People told me I should move to New York or Nashville, that I needed to network so I could build a career.

But I couldn’t. I didn’t understand networking; it seemed like transparent self-aggrandizement. I also still had difficulties with groups of people. Without alcohol, parties exhausted me, and live music was painfully loud and overwhelming. Few artists held my interest; I grew fidgety and tired watching the others. And the thought of moving to another state, all by myself, was terrifying. I still relied heavily on my parents to take care of me; I didn’t know what I would do, so far away from them. I couldn’t imagine it, and so I never left.

The music career fizzled out and I started working with animals as a veterinary assistant. While people were completely opaque to me, animals were an open book, so I thought work around them would help me feel more normal. It went well for a time; I was good with dogs and cats. They calmed me, and so I calmed them.

Unfortunately, working with animals still means working with people. At one point, my supervisor pulled me outside. She said no-one wanted to work with me any more. It was my attitude, she added, thinking she was being helpful. But I was at a loss. What attitude? I didn’t think I was behaving any differently. I started to cry. She told me to take off the rest of my shift, go home, pull myself together, and come back for my next shift in a couple of days.

I resolved to be better, and I was, for a few weeks, carefully curating everything I said to remain “positive.” But I couldn’t keep it up. I would get tired, the facade would slip, and my normal behavior was off-putting. I left for another animal clinic.

And eight months later, another after that. One, I almost made it a year. The next, I didn’t last the summer. Something wasn’t working. Something about me was still wrong.

I buckled down. I simply had to get better at this people thing. I thought I was just lazy – other people managed to be naturally sensitive to others, so why couldn’t I? I just needed to apply myself. I started studying human behavior closely and I delved into the acting like never before, some on stage in community theater, but even more so in real life, with still another new group of friends. I came to realize that people lied to each other, all the time. They pretended to be interested in other people, to be happy for them, to agree with them, even when they didn’t. They expressed sympathy for things they did not necessarily care about. They made a point of making other people around them feel good about themselves even if it necessitated a blatant disregard for reality.

I didn’t understand it, but I could imitate it. I did want other people to feel good about themselves; I didn’t want them to not want to be around me. I became much, much better. But at a cost; it was exhausting. I couldn’t keep it up for very long; not enough for a forty hour work week, or, going back for a second bachelor’s degree, a full load of courses. But I found a job while I was at school, caring for animals in the animal research wing, where I saw almost no people at all. It is the only job I ever kept for more than a year. Just me and a few thousand mice. It was perfect. I loved it.

My professors loved me; I was bright, articulate, and insightful. My classmates were friendly with me and seemed to enjoy my company despite the near twenty-year age difference. Things were working, finally, for the first time in my life. It took me five years, but I graduated with honors.

Then I started a graduate program. The social aspect was not a problem, mostly because graduate students are too busy to socialize. But I foundered under the deluge of course work and bench demands. The autonomy immobilized me. I couldn’t put an experiment together from start to finish, never mind a slate of them to test a theory. I tried to get my student mentor to tell me what to do, and he finally said, more gently than he probably wanted to, that this was graduate school and I needed to figure these things out for myself.

My classes were worse. I couldn’t understand what was being asked of me, couldn’t assimilate all of the information, couldn’t prioritize it, and couldn’t figure out what I was supposed to learn. As an undergraduate, I had simply learned everything, more or less. This strategy fell apart in graduate school; there was far, far too much. My first exam came back and I had the lowest grade in the class.

I went to see the professor, who said, “I didn’t understand your exam at all. You didn’t answer the questions I asked.”

My other courses were no better, and on the bench, I had only produced one piece of usable lab data over the entire semester. Three weeks before finals, I underwent a battery of tests, desperate for some explanation as to what was wrong with me.

One week later, I had a diagnosis. Autism Spectrum Disorder Level I, a high functioning cohort of autism that includes those with Asperger’s syndrome. And me.

My life up to that point had been an impenetrable entanglement of failures, frustrations, and misunderstandings. It now settled into place like blocks in a preschool puzzle. It’s not my fault.  I kept thinking.  It’s not my fault. I did the best I could.

I was relieved. And so, so angry. How had it been missed? How many therapists, doctors, educators, had simply diagnosed me with depression, told my parents I was just exceptionally intelligent, bored in my classes, that some children had difficulty fitting in, that I was otherwise normal? Normal? I was anything but normal.

I had been trying, wildly unsuccessfully, to force my autistic brain to operate under a neurotypical framework that it was immensely ill-suited to and no-one noticed. I had floundered, apparently invisibly, for four decades. All my problems had been laid at my own feet; I had been called insensitive, accused of not paying attention, not concentrating, not trying hard enough. None of those things had been true, but a lifetime of accusations had shredded my sense of well-being. I was now not just autistic, but horribly anxious and depressed, all the time, unable to reconcile my inner self to the outward impression I made.

No-one could ever tell I had autism. Not even my graduate advisor, who figured I just couldn’t hack it and pushed me aside. I dropped out after one semester. To this day, he does not know.

My acting, ironically, was now flawless; at some point, my disguise had become complete. No-one withdrew from me any more. The woman who had administered my psychological exam wrote that I was “warm and easy to establish a rapport with.” My few friends adored me. No-one had – has – any idea whatsoever that I am a faker, a sham, a walking performance piece entitled “Socially Habituated Human.” Or that maintaining such a performance requires an immense expense of mental energy that was, and still is, extremely taxing.

Outside of work – I am back working with animals, again – I have little energy left over for socialization with friends. Going to dinner with a group is impossible; there are too many people to try to interact with at once and I can’t focus on the right ones at the right times. I can’t stay at a party for more than an hour, and I am zombie by the time I leave. But I can’t turn the performance off to save energy any more; it’s now a permanent part of my demeanor.

I’ve wondered if it might be a protective mechanism, to shield me from the ostracism I suffered so often growing up. I’ve wondered if I’ve somehow pushed my brain into making new connections that it wasn’t physiologically designed to make. Whatever the reason, as soon as I am around another person, I switch on as though triggered by motion sensor. The smile. The greeting. The interest in his day, asking after her son, their weekend plans. I can’t not do it. Unless I am alone.

And so I have to live alone. I can’t do this at home, too. My only roommates are pets, cats, and they are perfect; quiet, accepting creatures, content to curl up next to me and snooze or groom themselves while I write or watch TV. (But not while I play guitar. Everyone is a critic, it seems, even animals.)

I know my limits. I have become that odd person I had so fervently wished not to be as a child. I joke with my co-workers about my absent-mindedness, my OCD, my need for repetitive activities. Everyone knows about me and my sunflower seeds. Wait – are you eating the shell, too?

I hoard bubblewrap. I pick through the empty boxes after shipments come in and stuff it in my tote bag so I can pop it in my car when I’m stuck in traffic. My friends know that when we go out to dinner, I have to sit with my back to the TV so I can pay attention to the conversation. My niece knows, too.

“Your aunt has a lot of little things she needs,” I said to her once.

The thirteen-year-old rolled her eyes and sighed. “I know.”

I resent it sometimes. For all of my gifts, the intelligence, the writing, the acting, the music, it makes me sad that I am consigned to walk around in the perpetual pose of a very good guesser. I never did learn to read people. Close friends and my family I have been able to study, the way I studied philosophy or chemistry. I have learned what their tones of voice mean, and the indications that underlie subtle shifts in their facial expressions and postures. But I can’t gather that much information on everyone I meet. I just have to rely on what I know intellectually is most likely to be appropriate in a given situation, toss it out while appearing as sincere as possible, and hope for the best.

And what frustrates me more than anything is that no-one has any idea that this is what’s going on. If I do make a mistake here or there, people are too polite to mention it.  At work, though, I am always playing catch-up.  If I am too distracted, focused on some task or another, and my voice will turn taciturn, making me sound unfeeling or rude. I still struggle with understanding my mistakes, made worse by my inability to use the information provided therein to avoid them in the future.  Workplace politics are completely beyond me.  Even though I have been open with them about my autism, they don’t see it, and don’t perceive what they can’t see. I am held to the same standards as a neurotypical person, with the same consequences if I slip up.

No sees the constant mental calculations involved in everything I say and do, the herculean effort I must exert to stay in the here and now, to respond to those around me in a socially acceptable way at all times. I can’t allow my mind to wander, ever, unless I am alone. And it usually doesn’t. I’ve been doing this for a long time; it is pretty well baked in.

I was talking to a close friend, who asked about whether I do it around my family, turn this puppet on that I manipulate through various social situations. And I don’t think I do, or at least, not to the same degree. But I also feel a lot of love and sympathy for my parents, who had this alien creature on their hands for so long and are just now coming to understand what she wants and needs. Plus, Momma Ape still isn’t doing so great, physically. The least I can do is put a lid on it around her; she’s having a rough go already. Poppa Ape, probably more worried about her than he cares to admit, also doesn’t need to navigate excessive layers of my crazy right now.

I can be myself around TNC Ape (my sister), but I now have a thirteen-year-old niece whose only exposure to autism is probably the weird kid in her class who wears too many sweaters at once and doesn’t talk to anyone except to announce at various times that he is able to perform some task or another. She already knows her aunt TG Ape is weird; I do find myself acting around her.

So yes and no, and still, only comfortable alone. That’s pretty much it. Although, I can confidently say that I don’t perform for my pets. Or my patients.

It’s nice, being alone with the patients, just me and someone’s beloved dog or cat, in those brief moments when I’m waiting for another nurse to finish her task so we can take an x-ray or take out his sutures or some such. It’s the best part of my day. I sit next to him, hold him close, bury my face in his fur and tell him it’s going to be OK. And sometimes, I’ll feel him relax a little and lean against me while I rub his coat. For once, I am with another creature, just as myself, and we understand each other perfectly.

Then the other nurse comes in, the actress reappears, and we get on with the rest of the day.

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where god is

I have suddenly realized that somehow, somewhere, over the last however so many months, I have lost my faith. I used to center it in the altruism of humankind, the ability of my fellow creatures to reach outside themselves and do something for which there is no reward, other than the inner satisfaction that comes from being useful, being helpful, being needed. But I am now left feeling unfulfilled by that alone, that which is, for all intents and purposes, a mere mental construction, a sidestep taken to avoid confronting the persistent doubt that anything greater actually exists.

I have tried to find that something greater, grasping at the gods of different religions, trying to take hold of them, and yet unable to assimilate the gildings of humanity that entrap their ephemery – this god, this belief, this way. It makes no sense to me, my autistic brain insisting on the purity of a definition: that if it is god, then it must need none of those things. Humans need those things; gods don’t.

And how to ascribe to some unknowable force that which science readily explains? What’s learned cannot be unlearned. When understanding is best reached through critical exploration, double-blinded study, tissue- and cellular-level examination of life, sub-atomic dissection of matter, how to imagine anything beyond those extraordinary boundaries, those laws, so painstakingly acquired? I do not see god in churches, chapels, temples, nor under microscopes or in equations or in heavenly [sic] bodies, all of which are entirely describable within the parameters outlined above. There is a scientific underpinning for virtually everything. There is too little of what there isn’t to justify the existence of some all-powerful force with its hands on the levers. God didn’t take my shoulder pain away. A surgeon did that. God didn’t cure my insomnia. Medications alleviated it. (And imperfectly, I might add, on both counts.) God didn’t almost take Momma Ape from us last summer. Medical, scientific, human mistakes did that.

I can explain almost everything around me with science. What little I cannot, I am able to attribute to a depth of scientific knowledge as yet unplumbed. Where is there room for a god in that?

And yet I ache, inside. I am terrified of being spiritually alone. It crushes me to think that once the body I inhabit disappears, I, all of my thoughts, all of my personality traits, the way I smile, the way I write, the way I move (all more or less within the scope of modern genetics, of course), will disappear with me, just vanish, as though they never were. For what are they, anyway? Are they truly nothing, little bits of information, meaningless when taken apart, their very coherence the product of a mind biologically predisposed to assume the presence of a higher power with absolutely zero hard evidence as to its existence?

Was there more god in ancient times? Or simply less science? If we cannot explain it, it must be god, yes? Originally, some cultures assumed god was female, since females were the producers of life, back when males were not thought to be an essential component. Because they just didn’t know. People thought gods changed the phases of the moon, brought sun and storms, health and disease, made crops flower, animals come and go, seasons cycle past, all because they had no other explanation. And at every step, the more we learned, the narrower the scope became within which a higher power could work.

Certain humans and cultures fought to keep their god as science marched forward, fought to preserve a small corner of existence for a great unknown, claimed knowledge of an unknowable afterlife, clamoring for a piece of the mystical outside the reach of human influence. Now, even though we have yet to definitively understand how life as we know it began, scientists are so close that a guiding hand, or even a bare nudge, may soon become gratuitous to the explanation. And what then? What space will remain for god to inhabit? Coincidence? To think of a god reduced to scheming via luck, seems no god at all, just natural randomness that we choose to see patterns in, pattern-seeking creatures that we are. Creator? Not exactly.

But in complaining of this to a close friend a few night s ago, he responded, “Well, how do you expect God to act? By sweeping down from above?”

Is it possible that I have missed something? Is it possible that god is in everything, and that our understanding of it and the world is parceled out to us as such because it is the only way our minds can envelop it? Not because there isn’t more out there, but because the limits of our mental capacity bar us from comprehending it? That we cling to science because we need a world with rules, because a world governed by spirituality alone doesn’t make sense? That whatever god-thing there is is careful not to reveal itself, to act only in ways we can explain away, to hide in plain sight, to be everywhere and nowhere at once, for our benefit? For what would happen if we did suddenly discover that all of these laws of physics and chemistry and biology could be overturned at the whim of some all-powerful consciousness? What anarchy might descend if the rules no longer held, if god suddenly was everywhere?

There are certain, inexplicable outcomes that scientists refer to as “jealous phenomena”. These are happenings, turns of events, strange abilities that wither under the light of scientific inquiry, and yet seem to exist nonetheless; a cat that can tell when people are about to die; a child who knows when a beloved uncle has passed hundreds of miles away because he visits her in her bedroom doorway, a woman who can hear animals’ thoughts. In the same way that observing certain subatomic particles freezes them, changes them, as soon as we try to get a hold of otherwise inexplicable happenings, they vanish. Is this itself god, hiding from us, knowing that we simply cannot absorb the unadulterated entropy of a frameless existence, outside the time-linear, three-dimensional, physical world we comfortably inhabit?

Perhaps science, luck, coincidence, is god’s way of protecting us from the full havoc of its being. Perhaps it works through our physical laws not because it needs to, but because we need it to.

And it has been there all this time and I just didn’t see it?

More important, can I see it now?

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book two – mind

It seems that fate has deemed that I did not get a thorough enough education in invisible disability from my chronic pain.  Since that has been reduced to the category of problematic, rather than life-altering, a new demon has arisen to take its place.

In December of 2015, I discovered I was a high-functioning autistic.  I had assumed that being armed and open with this knowledge would be more than enough to forestall any future difficulties with it.

I was incorrect.

Welcome to Book Two:  “mind”


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What does it mean when you say you “can’t” do something? Sometimes it is literal – I literally can’t do a handstand. But often it is more subtle, meant to impress a sort of finality despite the lack of a literal barrier, an underhanded implication that we would, under other circumstances, but for reasons we wish to assert are beyond our control, we can’t.

As for me, right now, I can’t swim.

Except I can swim. Adeptly. Swimming isn’t like running, a sport anyone can take up at anytime via purchase of a pair of running shoes and a personal commitment. No-one has to to teach you how to run. But you have to be taught how to swim, even if the teacher is yourself. Swimming with any kind of efficiency generally requires a teacher other than yourself, along with adoption of a small parcel of other skills like remaining horizontally afloat and learning to breathe while moving through water. There’s a hump to be gotten over for starting regular swimming, a higher boost of activation energy to go from 0 to 1 than there is for running. I like that about swimming, even though I am able to through no personal perseverance of my own, and would do it whether or not that were the case.

Like me, many adult swimmers learned to swim when they were kids, something deemed important by their parents, such as learning to ride a bike or drive a manual transmission – not absolutely necessary for survival, but a useful skill nonetheless. Some tenacious individuals took it up as adults for their health or because they simply wanted to.

I know there was a time in my life when I couldn’t swim, when I was afraid to put my head under the water, but I don’t really remember it. For all I know, I love to swim, and always have. I love the water and I love being in the water. As ungraceful as I am on land, my frequent forgetting of where my hands and feet are, my persistent inability to improve my hand-eye coordination, none of that matters in the water. In the water, I am graceful, powerful, knowledgeable. I’ll swim just about anywhere. The ocean is my preference but I’ll take whatever you’ve got, as long as someone says it’s safe (and perhaps even if someone says it’s not).

But every time I swim, now, my shoulder pain rockets from a 3 to a 9 within 48 hours. The cause-and-effect pattern has been established. So right now, I can’t swim.

I had said I would do whatever it took to keep from being in that kind of pain again. And I hate all the drugs, the time and money wasted on pointless physical therapy, the injections, the roller coaster of hope and disappointment. I mean it when I declare I’d do anything to get a pass from that horror show.

But what if it means I can’t swim?

I mean, that’s the logical end to this thought exercise, isn’t it? What do I want? To not be in pain. What causes my pain? Swimming. Well, it seems pretty simple, doesn’t it?

But I love to swim. Am I willing to never swim again in order to not be in pain? How is it that I’ve found myself in this place, where I have to sacrifice a cherished activity, something generally considered good for one’s health, in order to be well? I don’t want to say I can’t swim. I don’t want to not be able to swim. But I have this fear, and it’s strong, about swimming, and about pain.

I mean, I can swim, if I want to deal with debilitating pain for several days afterward. I suppose I should try to arrange for some diagnostics to “catch” whatever the swimming is doing in the act – set up an MRI or something and then do a swim workout the day before and see what it sees – if it sees anything. Which it probably won’t. But maybe I should ask. Because it’s the only hope I have now, I suppose, of figuring out why it is that I shouldn’t – can’t – swim.

Because right now I can’t. I can’t swim. I am unable to, not because I don’t know how, not because I wouldn’t rather, but because of other circumstances which prevent it, without which I’d probably be in the pool right this very second.

So, I can’t.

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“Carpal tunnel” What?

“There is nothing wrong with your ulnar nerve.” The neurologist spoke in the soft, mixed British-Asian accent of highly educated students from that part of the world. “It is all median nerve. Carpal tunnel.”

Never mind that distal fourth and fifth digit numbness in both hands cannot possibly be explained by carpal tunnel. If the doctor says carpal tunnel, you get treated for carpal tunnel.

So I went to a new pain doctor, and he gave me an injection in my right wrist for carpal tunnel, which was decidedly less fun than many of my other injections, particularly the part where he digs around with the needle to inject the numbing medication, while telling me to “let him know” when he hit the median nerve. Which he did. Often.

And sure enough, the excruciating burning and pins and needles in that hand disappeared. And sure enough, I still have zero sensation in the tips of my ring and pinky fingers, and slightly above zero in the tips of my other fingers. But I have to admit, this is not going to keep from working the way the loss of tactile sensation and excruciating pain in my hands did. So I suppose I should just shut up and be grateful and get used to it.

And I am. Getting used to it. I am somehow still managing to learn new modes of fine motor coordination without the level of direct feedback I once had. My hands are improving, in surgeries. I am able to adjust retractors to hold them steady in real time by compensating for the slight, uncontrollable movements of my hands. And certainly, that is all the surgeons care about. They just don’t want things to move, and whether I have been holding them for twenty seconds or twenty minutes is of no import to them whatsoever.

I also received a cortisone injection under each shoulder. Unfortunately, the one on the right didn’t work. I have not tried to swim since the last flare-up. But according to the new pain doctor, and tentatively confirmed by my shoulder surgeon (who apparently has a thing for me, but that is a thing for another post), the bursitis that was removed back in January of 2015 is likely reforming in that same area, and the cortisone can’t do anything about that. This new pain doctor, bless his heart, apparently unaware of my previous trip down this road, suggested nerve blocks and nerve ablations.

Anyone who has read Book One is probably a little confused. After all, wasn’t the ultimate goal of that January surgery to remove the part of my shoulder blade that caused the first bursitis so it wouldn’t come back? So why is it back?

To be fair, it isn’t bad, yet. But unless I never want to swim again – and despite four months of physical therapy to engage the “correct” muscles when using my shoulders while swimming – it will continue to worsen. A mere two years and change from the original surgery.

So back into the wilderness I go, that same vast jungle of medical unknown from which I thought I emerged last year. Distal digital numbness? No known cause. Re-emergence of the bursitis? Ditto.

If nothing else, we have been able to clarify swimming as a direct causal factor to the pain and tissue derangement under my right scapula, having first sent me back to the surgeon after swimming in the ocean in August, and then each time following a swim workout since. Troublingly, each time, the pain has rescinded just a little bit less.

But why? I want to know why. What the hell is it that I do when I swim that aggravates that area? I don’t just want to throw treatment after treatment at it, or more random physical therapy (which may have very well exacerbated my carpal tunnel, yay) in which people with enough medical training to help with 99% of pain and weakness associated with anything from athletic to surgical injury are at a complete and total loss to explain why, despite the strengthening of the muscles they have pinpointed, I don’t get any better.

I’ve made significant postural and muscular changes to my upper body. My shoulders are aligned with my spine. The larger and smaller muscles underneath them have taken back the jobs they held before being rudely superseded by my traps. But it doesn’t seem to matter. I get into a pool and start swimming, just a crawl, the same stroke I’ve been performing, more or less the same way, since I was a child, and something goes awry.

And no-one knows what or how. A phalanx of medical professionals has come up totally empty. And even now, as I lean my head back to stretch my neck, I can feel that familiar, saw-blade edge rubbing under my scapula, just like before.

I went through all of this for more than just a reduction in pain, although that was the primary goal. I wanted to swim again. I said it to everyone. And everyone assured me there was “no reason” why I couldn’t get back to it. Time and again. No reason. It undoubtedly would have been more accurate to state, “no reason that I can think of.” Which means there could be many, many reasons, and they just don’t know what they are, and prefer to deliver the supposedly comforting fiction that they therefore must not exist. Which is not comforting, to me, at all.

Oh, I understand the motivation. I play the same games with myself, often forcing myself to deal with uncertainty by dwelling on best-case scenarios instead of worst-case ones, because it doesn’t affect my ability to handle the outcome and why spend time feeling like crap if things are going to be OK?

But not for this. No, no, no. Not my shoulder. I have already denied, confronted, raged against, settled with, and been released from the possibility that I might have permanent pain and disability there. I just don’t have it in me, looking back on the emotional horror of those harrowing two years, to wobble back and forth on that same razor’s edge once more for months on end while game new doctors venture into the wilderness with me to try to figure out what’s going on back there.

The pain persists, both the residual mental fallout and the shoulder itself. I want desperately to comfort myself, to get in the pool, to slip into that quiet, pale blue and let the cyclic motions of my body and breath relax my mind. And I don’t dare. And I feel that deep ache at the pit of my stomach growing with the pain in my shoulder. No-one can help me. That’s what I think. It’s over.

And nothing but trees and darkness, everywhere I look.

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“You know it’s dangerous for someone like you to take opiod medications.”

My head was in my hands as I rocked back and forth in the chair across from the neurologist. “I know, I know…” I moaned, “…but I just can’t keep going like this, I can’t…” The pain this morning had been extremely bad. Tears were threatening to render me unable to speak. I took a deep breath.

“So here’s what we’re going to do,” she continued, writing new prescriptions for much higher doses of my current, non-opiod medications. I had my doubts, but I took them anyway.

“Thank you for fitting me in today,” I said, sincerely, aware that the appointment was now close to over. I had called her office this morning as soon as they turned on the phones, after another hellish early morning wake-up from the relentless burning in my hands, which felt as though they were under a too-hot faucet that wouldn’t stop. An hour before, they had felt as though they were submerged in ice. I could sleep through that. But not the heat. I finally, reluctantly, got out of bed at 4:45, did my morning exercises, made coffee, and waited for the sun to come up. It felt uncomfortably familiar, and a thread of fear wrapped itself around some deep part of my soul.  I resisted the urge to pull it tight.  I pretended that it wasn’t upsetting, how much the dark morning reminded me of when I was still confined to my apartment, writing this blog in predawn hours, in so much pain I could barely even take care of myself.  The kind receptionist had returned my call an hour later to let me know about a cancellation, upon which I pounced.

Now in the exam room in the early afternoon, a cool brightness glowing in from the snow-covered city outside, I looked at the stack of small, pure white, square sheets in my hands.  “So, all these pills – this is just until we figure out where the problem is and treat it, right?”

There was a pause. “Well, I need to tell you,” the neurologist responded, “you’re never going to be completely pain free.”

It wasn’t exactly a surprise. I think I reacted well.  But I discovered that some small part of me had thought, after the second shoulder surgery, that pain free might be an option. That small part of me crumpled right there in her office. Of course I will never be pain free. Of course.

“It’s ok,” I had replied. “I can work with a pain level of 3 or 4. It’s just been getting to 7 or 8 and I can’t compartmentalize it when it’s that bad.”

“Okay. But I just wanted to tell you, there is no treatment that will completely fix this. You’ll always have some pain.”

I nodded to let her know I understood.

And I did. Too well.

But as I walked back out to my car, coat open because I didn’t feel like bothering with the buttons, mostly ignoring the icy wind that whipped through the thin sweater underneath, I realized I had still held out a tiny speck of hope, however pale and fragile, that I would be pain free at some point in the future. The realization that I wouldn’t cut through with a far sharper edge than the wind, leaving bleeding edges on my emotions, already weakened by the lack of sleep. I didn’t want to think it.

I don’t want to think it. The idea that I could be truly well, at some point, eventually, if I just did what the doctors and physical therapists told me, had kept me from slipping into the abyss from which my depression had been tempting me. And the neurologist just snuffed that glimmer out, small candle that it was – as gently as she could, it was true, but it is dark now nonetheless.

It’s what I’ve been begging for, of course, for a doctor to tell me the goddamn truth, for once. But the problem with the truth is that it’s unpredictable, and often unpleasant. Or, in this case, devastating. I will always have pain. I will always take pain medications. My hands will never be as they once were.

I can’t even think about the implications for my work. My blood-drawing accuracy depends on being able to feel veins under the skin. The loss of tactile sensation has meant that I’ve missed every stick I’ve tried in the last week and a half. And now it seems I may not get it back.

I don’t know how I got here. A few months ago this was manageable, an annoyance more than anything. Now it’s frightening, and to some degree, permanent. I want to ask why. I want to scream and rant at a god whose existence I have never been fully convinced of at the top of my lungs. I want to blame someone for this. I want to take it out on them. It’s just too much.

And too little. Pain is invisible. No-one will ever know how bad it is, how hard it is to go about one’s daily business on top of it, to push it aside, to quell the fear that comes with it, to act as though it didn’t exist.

I pause from typing and stretch out my fingers. They look deceptively healthy. Normal sized, and a well-oxygenated, peach-pink color, more red at the tips from the collection of capillaries there. I curl my fingers into my palms and clench them to reassure myself that I still can. Will I get to a point where I can’t? I don’t know. What does partially fixed look like in the current scenario? Will some sensation return along with the lessening of the pain?

The neurologist answered a question I didn’t ask. But there are a dozen others following on its heels. And I may very well not like the answers to any of them, either.

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Last night I did not sleep.

The pins and needles and burning in my hands are now unchanged by any sleeping position I can discover. I tried taking nearly every medication in my night stand – insomnia, nerve pain, muscle relaxant, prescription-level (and now nearly impossible to obtain due to its side effects) anti-inflammatory prescribed in similar doses to horses. Everything except the opiods, which I am often tempted to take just for their mood-altering properties, a road I dare not set out upon. Nothing worked. I tried meditating and could not relax. I tried watching TV and gave up around 3 AM. I laid in my bed, perfectly prone, arms straight down and pitched slightly out in an attempt to keep them as stretched and relaxed as possible. It did not make any difference.

I must have dropped off, finally, fitfully, around 4, and then awoke again at 7:30 and dozed intermittently for another couple of hours before I gave up and got out of bed. And now, my forty-something body, unrecovered from the day of physical labor yesterday, hurts all over, in particular my upper back, the very muscles I have now developed to combat persistent shoulder pain that I thought was an after-effect of my surgery, but which now seems to be due to another cause entirely.

I can’t do this again.

As I lay awake in the dark, that thought was on reel, incessant, useless, over and over in my head, even after the few tears I shed were decommissioned due to exhaustion. I didn’t even have the energy to weep. All I could do was beg the god of my understanding, slumping out of bed to assume a praying posture against it, on my knees, head bent on clasped hands.  Please, please, please help me, please make it better, please make it OK.

I don’t think have another trip down the chronic pain hell-hole left in me. Last night, I received a text from Momma Ape about another surgery to remove one of the implants whose placement resulted in a six week hospitalization that, frankly, nearly killed her. I had thought that this weekend’s post was going to be about my feelings regarding her going back to the same surgeon and hospital for a corrective procedure, an idea I vehemently opposed, to make a grossly inadequate understatement. I was all set and ready to go on one of my card-carrying, this-is-why-people-read-my-shit rants.

And then last night happened.

Before the crisis that spawned this blog in the first place three years ago, I was bigger and stronger than I am now. I’m not unhealthy, and I am strong again, though not as strong as I was despite my pretendings at work to the contrary, and also not as big. I may very well be underweight, a possibility which I am unopposed to intellectually, but which my body image issues override and thereby refuse to entertain, making it a condition that is unlikely to rectified in the foreseeable future.

I also had no idea what was in store for me the last time and oh, what I wouldn’t give for that blissful ignorance now. If the issues with my hands do not rapidly improve, or at the very least, do not get any worse, I am not sure I will be able to work. This past week, we had to help a large mastiff outside following a life-saving, forelimb amputation procedure. The dog weighed upwards of 125 pounds. One nurse lifted the back with a sling, while I slipped a large towel under the front to help the dog get outside to the walking area.

I could not manage my share of the weight. Not because of how heavy she was, although that certainly was a factor, but because I was unable to command the strength required to grip the towel and lift the dog at the same time. My hands would not cooperate. A third nurse guiding the head had to switch places with me.

It was the first time I had been replaced by a non-male nurse due a strength issue since I started working there last year. It was humiliating, and worse, frightening. I could swing a 65 pound animal off an x-ray table, no problem. But I couldn’t lift that same weight via sling because of the loss of tactile capacity and burning, pins-and-needles pain in my hands.

Even in the surgeries yesterday, which, fortunately, only involved managing soft-tissues elevations, I had to watch my own hands as much as the surgeon’s to make sure things weren’t slipping, because sensation in them disappeared seconds after taking hold of the instrument in question. Even while simply standing with the next instrument to be used, or waiting for further guidance from the surgeon, because of the demands of sterility, I was unable to let my arms drop to my sides, the only position in which my hands are even remotely comfortable, because I would have been placing them outside the sterile field.

For one procedure, the surgeon was on the phone with the client for an extended period of time after we had opened the room and scrubbed the patient, and I was forced to remain in sterile pose, hands clasped at my sternum, for over a half an hour before he himself came into the suite, scrubbed and gowned, to begin the mass removals.

Following that same operation, I was asked to hold pressure to a debulking site in the subject’s mouth for close to ten minutes because the area was not amenable to suturing. I lost sensation in my fingers completely long before the ten minutes was up. I placed my left hand over my right so I could relax my fingers without relieving the pressure, which helped a little, but not much.

It was excruciating. And of course, I told no-one. The fragile eco-system that is the veterinary surgery support staff at that hospital demands that each member operate at maximum capacity for virtually ten hours straight, in particular when one or two members are unable to work and call out – likely, now that I think about it, due to the stress entailed in that very situation – and my position, in particular, is extraordinarily specialized. There are only two other nurses who can act as surgical assistants in the OR, one of whom is full-time, like me, and already has a full slate of surgeries of her own each week, and the other of whom is semi-retired and one of the primary caregivers for her grandchildren. If I go down, or even if I can work but not in surgeries, the efficiency of that eco-system will devolve significantly, and may result in my eventual replacement.

As it is, though, even that worry is superseded by the fear entailed in the diagnostics of the upcoming weeks. I have always been the zebra among the horses. I probably get it from Momma Ape, in some strange way. I am concerned, and I think rightly so, that the tests will fail to show a definitive cause for my condition. The the doctor will insist on the treatments that would have accompanied that cause anyway, telling me that sometimes it works even if the diagnostics are inconclusive, but probably doing it because it’s the only thing she knows how to do to fix what may (or may not) be wrong with me. These treatments will run the gamut from unpleasant to excruciating, and what if they don’t work? I will be stuck bouncing around the far reaches of medical science once again, waiting until I stumble upon a practitioner who has seen my condition, and its resistance to common treatment, and knows what to do. If I get that lucky again. Which I am more than a little worried I won’t.

I got lucky with my shoulder. But it wore me down. I don’t know if I have that much strength – or luck – left. Not after last summer with Momma Ape. Not after the previous two years plus of relentless pain and fatigue. No. No. No. Not again. I can’t do this again. I just can’t.

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