not so small

mouseonthumb

“Trace the exact path of your pain for me.”

I sit on a padded exam table facing the neurologist, having passed the slew of tests to determine if the pain and numbness in my hands is due to something in my brain as opposed to my periphery. I trace a path from my ring finger , down the side of my palm to under my wrist and forearm, over my elbow and up my triceps.

“What about the left side?”

“It’s the same, only not as bad.”

“Trace it for me anyway.”

I do.

She writes prescriptions for two new medications. She also wants me to take a nerve conduction test, on both sides. She recommends I pull out some of my leftover opiod pain medication for the procedure. I have learned it is never a good sign when a medical professional suggest you take pain medication prior to a procedure, but it’s not like pain is a new thing. I’d had such a test before to assay for carpal tunnel and it, well, sucked. But this was before my whole pain scale had been shifted up several levels. Perhaps this won’t be as bad.

But that’s a post for another day. This is a post about the remainder of my conversation with her (the neurologist). I pressed her for details. What was she expecting the results of the test to be? Getting an answer for that was like pulling teeth. But getting an answer for my next question; i.e., what are the treatment options for the likely diagnosis, which was some sort of impeded nerves in my arms, was more difficult still.

Still, I pressed on. Jesus, lady, after everything I’ve been through, don’t soft pedal me, I need to know what I’m getting myself into. I was afraid she would say there was no treatment, but instead, she said something worse.

Surgery.

Oh, no, I thought. I’m not going through that s**t again. No, I’m supposed to be better now. I’m supposed to be fixed. I was disabled for over two years. I’ve had chunks of both of my shoulder blades lopped off in order to relieve said disablement. It took a year and a half to get back here, but I’m finally working again. At a physical job that requires full, four-limbed competence, by the way. There is no light duty version of what I do. In fact, if I do have to take off work for an injury, I have to submit a stack of paperwork with a doctor’s signature on it before I’m permitted to work again.

I asked about conservative management, which she was quick, if less certain, to acquiesce to, but the damage had been done. Besides, I know enough to know that if something is preventing the nerves in my arm from conducting signals, the mere fact that it is localized to my periphery all but guarantees a physical, rather than physiological, cause. And even now, as I type this, missing letters because of the numbness in my fingers and having to pound on the keys as though I were punishing them, I know that I am in for another medically challenging, not to mention expensive year.

I just wish I understood. Or I wish I didn’t feel like I needed to understand. Haven’t I learned by now that asking why things happen is a pointless, not to mention demoralizing, exercise? But when I have a moment and I sit down and think about what I will do if I have to have more surgery, I can’t keep that destructive little voice in my head quiet. Why must I perpetually tumble from one crisis to another? When do I just get to live my life? Why does the rug keep getting pulled out from under me?

I nearly lost Momma Ape last year. She rallied, but during and after, and upon returning home, she required 24-hour care, and I suddenly had to be the Momma Ape in our relationship. I wasn’t prepared for it. It was something I knew would happen at some point, of course, but I imagined that some point to be some twenty years away, give or take. I wasn’t ready to stop being my parents’ little ape yet. But Poppa Ape’s inability to be assertive with the hospital nurses and doctors, coupled with Momma Ape’s incapacitation, suddenly demanded that I be the ape who was in charge of doing what needed to be done.

And I hated it.  I don’t want to have to do it again.

I learned from it, too, of course. I learned I could manage such responsibilities, well, if not easily. But I’m still dealing with the pain and resentment of losing my parents as an anchor, of having to become my own. I suppose everyone has to come to that realization, early or late. But I could have used some time to get used to it. Instead, it was followed by a break-up with my significant other, and now, still grieving that loss, still unable to let go, I am facing yet another situation that could divest me of the independence I’ve come by at such a steep price.

I just don’t want to do this. I don’t want any more goddamn tests. I don’t want any more pills. I don’t want any more f***ing surgeries. Please, please, I don’t understand why it’s too much to ask to just go about my daily life, the greatest injustice in it being the fact that I am overworked and underpaid.

I don’t want to have to do this again, have to find people to drive me to and from things, have to beg for lenience from bosses, to have to go back to Momma and Poppa Ape and ask for help with my medical costs again. I had just – quite literally just, as in the last two weeks – paid down all of my financial outstandings except for my car. And just this week, I had to load up my credit cards again for new specialists and prescriptions.

I remember thinking, recently, how little I wanted to go on living if I was to have to do it on the current terms. As true as it was before, it is even more so, now. Why must I stay in this perpetual state of medical and monetary dependence? It’s all I’ve ever known and I hate it, I hate it all the way down to my core, and I just want to prove to myself, even if it’s only for a short period of time, that I don’t have to be dependent upon anyone if I don’t want to be. I don’t understand why I am still denied that opportunity. I don’t understand why this s**t keeps happening to me, and worse, why, if I’m to be forced to deal with it, I have to do it alone, dependent upon others for my physical health, but denied the emotional support of a partner, so I didn’t have to be so goddamn strong about everything all the time.

People will tell you how strong you are like it’s a compliment. Like you wouldn’t trade that strength for an easier ride in an instant. It’s hollow praise, given from a vantage point of surreptitious guilt and relief. I remember hearing it from one of my closest friends during the ordeal with Momma Ape, and from another when I was making arrangements to move out of the domicile I shared with my now former significant other. I don’t know how you can be so strong during all this. I don’t know what I would do.

Please. You’d be the same way. Not because you want to be. Not because that’s how you are. It’s because you don’t have a choice. Survive or fall apart.

I don’t get to do the latter because there’s no-one to pick up the pieces. And so somehow, I have to find a way to get through this next thing, whatever it is, trying and painful as it will undoubtedly be. And to think I had actually made plans for a year from now, assuming I’d still be working full time. I suppose I should have known better than to assume that my medical issues were behind me. I suppose I should be on the lookout to avoid making that mistake again. Not, it seems, that I ever learn.

Apparently, even my own tempered and limited optimism is not so small as to avoid being noticed, and crushed, by the vagaries of fate.

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here

darkstreet31

The pain is still here. It is a different kind of pain, responsible to different nerves, reducible by certain shoulder positions, exacerbated by many more others. It is accompanied by numbness in my fingers and concomitant tingling followed on its heels by a burning so exquisite it requires all of my concentration to ignore. The pain shoots up the underside of my forearm, and chases up my triceps, eventually engaging my shoulder and my neck.

It awakens me in the larger small hours of the morning, the numbness and tingling subservient to a burning toward which none of the phalanx of pain medications prescribed to me over the years can approach. Sometimes I can find a position that lessens it and go back to sleep. Other times I get out of bed and try to find ways to occupy myself until the general unstiffening of my wakeful, upright body allows it to subside.

I am able to work now, unlike before. I work with animals, listening to their hearts and lungs, holding them, restraining them, pulling their conscious and unconscious bodies into awkward positions for radiographs and surgeries and keeping them there in such a way that within seconds, the numbness, tingling, and burning descend like a heavy, indifferent weight that thickens my flesh until I am permitted to allow my and the animal’s limbs to drop.

I have told no-one at work how much of my work causes me pain. It does not matter. I need the work, and the work needs me. Whether I work or not does not change how much pain I am in in the mornings. It does not change whether I wake up in the middle of the night. It does not change my tolerance for certain positions over others, nor does physical therapy or exercise.

Pain medications are largely ineffective. I take muscle relaxants at night which seem to help a little. I take prescription-level anti-inflammatories during the day which help a little, but cause a different pain in my stomach, my digestive system now thoroughly ravaged from a nonstop diet of varying doses and types of pain medications over the last 3+ years.

Complicating matters, I am a high-functioning autistic for whom interpersonal interaction is an energy-sapping practice at which I still constantly fail and self-berate. My ability to layer on pain meds is limited by the amount of anti-anxiety, anti-depressant, and anti-insomnia psychosomatics I require for normal-seeming functioning.

I am never going to be a person who doesn’t need to take medication. And it increasingly seems that I will never be a person who doesn’t have pain.

Momma Ape’s condition continues to appropriate the distinction of being much more severe than mine; after nearly dying this past Summer from complications from invasive, lengthy spine surgery, she has yet to recover her full strength, and postoperative issues persist. I do not lean on her any more. I am single again, and doubt whether I will ever be able to choose an appropriate partner, considering my physiological inability to read people and situations, and so I have no mate to lean on, either. I have friends, I have co-workers, but there is no-one, here, now, who sees me on the inside as well as the outside.

I am alone, staring down a long road of barely tolerable existence brightened only by my work with animals, work I have thrown myself into in order to avoid being alone with my thoughts. I wish I could work all the time, but my physical and emotional limitations won’t allow it. So I have come back here to try to keep the darkness at bay.

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Book One

This marks the end of Book One and the beginning of Book Two.  To read Book One in its entirety from the beginning, click here.

Posted in Aspect III | Tagged , | Leave a comment

dare I think

girl-918734_640

Hey TGA, why haven’t you posted about your pain lately?

Indeed, why haven’t I? It’s not like I don’t still have it. But it’s crossed a line, now, into that previously elusive territory known as “manageable.”

Of course, I’m wary of classifying anything in my life at all as manageable, because very little actually is. I can’t even count the space inside my body in that category, as the last couple of years have so aptly demonstrated. The sum total of stuff I have control over is comprised of the dead surfaces on my meat suit and those contained in my living space, and perhaps my car, and… and nothing. That’s pretty much it.

Well, that’s not entirely true. There is a space that is purported to exist between my ears that I supposedly have some control over. And I do think, with the help of many friends, therapists, and Momma Ape (and TNC and MS Apes, too) that I have learned to get a hold of certain negative thought patterns and processes before they spin out of control. (Sometimes.)

For instance, right now, I’m in the tenuous position of probably being physically well enough to work while mentally uncertain if it’s practical to try to do so. Not to mention that MS Ape and I have been having conversations about life-changing events that may or may not occur between us in the next few months, complicating the issue as to how long I can skate along working from home as a writer supported in part by parental apes because I’m making practically no money at all, as I refuse to enter into a financial partnership with someone without being able to contribute in some way to expenses.

But instead of getting hopelessly entangled in my own crazy via the rantings and ravings of my autistic, anxiety-loving psyche, all that fulminating has yet to exceed the dull roar level. This is in spite of the stepping down of pain medication that I’ve been undergoing at the same time.

Right. Sorry. Back to my pain.

That’s what this blog was started for – pain. Because I was in so goddamn much of it, all the time. I needed to write so that it wouldn’t swallow me up. I go back and read some of the early posts from 2014 and I am horrified at what I went through, and how long I went through it. But now, countless misdiagnoses and mistreatments and then finally two corrective surgeries later, that pain is subsiding. Recently, I stopped taking the extended-release muscle relaxant at night, and while the first few nights of that I barely slept, I’m now often able to sleep unassisted as long as I’m not in too much pain.

I can’t believe I just wrote that. And what do I write next? I wanted to transition this blog into a blog about my autism, but it’s far from the neat, decisive break I had planned on. Instead, I have all of this leftover morass from the pain and suffering I endured, now spread with a thin layer of guilt at having emerged into a space that is, or will be, relatively pain-free.

How do I talk about what a glorious feeling it is to take medication for pain, and have that medication actually work? How do I recount with glee how much I love being able to help MS Ape unload boxes from my car into my storage unit? How do I wax poetic about placing an ice gel on my shoulder and fifteen minutes later, having my shoulder genuinely feel better? How do I do these things without feeling as though I am leaving behind countless others whose pain has not yet been – may never be – relieved?

So many people don’t understand the first thing about chronic pain. They dismiss sufferers as histrionic whiners who just need to suck it up and get over themselves already. And I’m different, not in that I have that pain, but because I know that pain, and through the act of writing this blog, have remained intimate with what the day-to-day is like for someone in that much pain. Right now, I could step sideways, ratchet my own discomfort up a few pain levels, and be right back in that space, perched on an emotional and mental edge, where the slightest disturbance in my environment or routine tips me over into free fall into an abyss with no bottom.

So perhaps what I should be doing now, since I’m no longer in that much pain, is advocating for those who are, stepping into the role of going to bat with doctors, therapists, and insurance companies for others the way I was forced to learn to do for myself. But I don’t know what that looks like, or if my education and autism limitations would allow me to pursue such a route. I have discovered, over these last few weeks, that I need a job that is primarily a telecommuting commitment. It is so exhausting to go out and interact with other apes that if I have a limited supply of energy to do it with, I’d rather spend the fuel on friends as opposed to co-workers.

But I feel like I need to do something. While I can genuinely say that I value the amount of personal growth I’ve experienced as a result of my ordeal, I want it to mean something on a larger scale. It meant so much to me to be able to be helpful to others in chronic pain by giving them this blog, something to relate to, something to think about, or at least something to distract oneself from the hideous, blaring space that pain forces one to occupy. Now divested of the original impetus for writing it, I feel like I’ve lost something important, even if it was something that I prayed feverishly to be quit of.

Where is that something? What is that something? And why do I feel like I “deserve” it? What makes me so special? Because of course I think I’m special. Nearly all apes consider themselves special, I suspect, at certain times in their lives. While my experience is unusual (to say the least), it isn’t unique. What makes me think it’s my job to pick up the flag and carry it to the parade?

Maybe what my job really is is to get over myself and remind myself where my fences are, and how grateful I was to find them, courtesy of what can technically be classified as a birth defect, if a rare (and even more rarely pathological) type of malformation. Maybe I just need to write what I feel, and what I see and read, and how I respond to it, and this blog will never have more than a few followers who may or may not remain interested. And maybe I need to be comfortable that, with being a small voice, ordinary, one among many, not all that special at all.

Dare I think I’d rather have pain than have that? Does that make me an awful person? I don’t know. All I’ve been through, and I suddenly feel like I know less instead of more.

Posted in Aspect IV | Tagged , , , | 1 Comment

scars

They don’t match.

That was my first thought as I sat on the edge of MS Ape’s bathroom sink, my back to my reflection, peering into a make-up mirror to compare the barely-knitted slices on my left scapula to the healed versions on my right.

My second thought was to observe how much the companion scars from a year ago had faded. I had hoped for permanent, ugly welts, unmistakeable signs of horrific injury and intervention on display whenever I chose to wear a backless dress. I felt I deserved cringe-inducing symbols of the physical and mental suffering I have endured that I could flash like badges in order to force people to respect and honor my ordeal.

But my skin has always healed quickly–far more quickly than anything underneath it–and last year’s insults have since faded into thin, brownish lines, barely visible from more than a few feet away. While those from a few weeks ago remain bright red, swollen, and slightly bruised, I know that they, too, will assimilate into the surrounding skin on my back by the summer, leaving only the barest hint of the skeletal resections undertaken beneath them.

I have been–still am, truth be told–unaccountably frustrated by the paucity of outward signs of my life’s recent challenges. To all appearances I am a perfectly healthy woman with an easy smile and mellow demeanor, always quick with light-hearted sarcasm about the weather or the sublime joys of city traffic when I find myself in close quarters with a fellow ape.

No-one can see the physical pain that follows my shoulders’ every move, or the complex interplay of whirring mental gears that precedes each line in my seemingly spontaneous small talk. No-one feels the heroic efforts behind my falsified politeness at four o’clock in the afternoon when I am so fatigued I can barely hold my head up and my shoulders hurt so abominably that it is all I can do not to scream out loud. No-one smells my dank, sopping sheets at four o’clock in the morning as I towel myself off, shivering and soaking wet, before rolling over to a dry part of the bed to try to fall asleep again, if I can fall asleep again, if I’m not in too much pain, or too emotionally rattled by the hyper-saturated, drug-induced dream from which I was wrenched.

No-one follows the carefully marked walkways in my mind that enable me to circumvent the many whirlpools of depression that wait to suck me down should I misstep, nor witnesses the water slipping over my head when I get caught in one anyway, because my guard was down when I watched a sappy movie, or heard a song that reminded me of my childhood, or caught a glimpse of a mother gathering her little girl in her arms and wished I was the mother, or better yet, still the daughter, that could run to her mother for comfort whenever she needed it.

I’m broken, I’ve been through hell, and I want other people to bear witness. I want visible, unequivocal proof of my inability to meet expectations of normalcy. But it’s too late for that. I’ve cultivated too much functionality at this point, and I can’t back out without undoing all my progress, unraveling relationships, disengaging from the bare beginnings of career writing work to build a justification for the label disabled that would relieve me of the many obligations into which I am now well and entangled.

There is no halfway between functional and non-functional in this society. One is either capable of being independent or one is completely dependent. You either get full (such as it is) disability support or you get nothing. I don’t get to say that I can work, just not full-time. That I don’t always need a handicapped parking tag, just when I have to carry things to or from the car. That I can use the stairs, I just can’t pull open the door that leads to them. That I can go about most daily living tasks, but only in the early part of the day and only with the assistance of handfuls of medications. I am neither here nor there but somewhere in what might as well be a non-existent gray area; I am the special case, the asterisk, the five-sided peg that fits in neither the round nor square hole.

Just like my scars, neither prominent nor nonexistent, just mediocre evidence of some apparently prosaic surgical procedure; everyone’s had something done by the time they’re in their 40s or 50s and what makes me so different from anyone else? And who wants to be special, anyway, right? How many times have I railed about not being able to fade into the background, to be just another worker among bees?

Except that I can’t; I will never be like the other bees. I will continue to be 3/4 of a human being in every way that counts on paper, with regards to my career and my coping with life, and there is no designated track for that, no box I can check or channel through which I can flow unaided. It was hard enough for me to accept it myself. Now I will have to painstakingly explain it to everyone I plan to interact with in any meaningful way, doctors, employers, friends. Yes, I know I seem fine; yes, I’m flattered that you had no idea I was autistic; yes, I know it doesn’t look like anything is wrong with my shoulders, but…

But, I have these scars, and they run deeper than even I can see; I am still surprised at their ability to penetrate the distant as well as proximate, the mundane as well as portentous. And the internal ones, the ones that resulted from the wounds to my pride, my aspirations, my faith, those are not fading into their surroundings. Those will stay bright red and tender to the touch for a long time yet.

Posted in Aspect IV | Tagged , , , | 1 Comment

shelfless

roofpiledwithsnow

Last week I was so, so angry. I couldn’t stop thinking about all of the people who have taken advantage of me throughout my life, most of them men, and how my autism made me such an easy mark, and how it seems wildly unfair that so many people were so comfortable with being so unscrupulous, and that few of them will ever have to face that about themselves, or feel sorry for it, or suffer any untoward consequences because of it.

Most children learn not to take people at face value from a relatively young age. My little sister (TNC Ape, who has taken no crap since pretty much forever) was a far better judge of character at the age of 8 than I will ever be. I now know the peculiar make-up of my neuronal connections is what prevented me from developing much skill at discerning when people were not acting with my best interests at heart, and explains why the list of bad actors is ignominiously, maddeningly long, with the latest (I dare not say last) couple of entries having come into my life as recently as the last couple of years.

But anger is hard to sustain, and now that I’ve taken a moment to check my surroundings, I seem to have wandered into the intersection where morose meets hopeless. The normal, healthy response (not that I’m one to preach about that) to becoming aware of such things is to learn from one’s mistakes and move on. Few people ever actually do this. While I happen to have an actual physiological barrier that inhibits my ability to notice when people are taking me for a ride, that doesn’t explain why I continue to be attracted to (if not actively seek out) experiences and relationships that increase the likelihood of  it  happening.

The battery of tests I undertook for autism and learning disabilities screened for other mental disorders as well, and turned up, among other scab-ripping tidbits, a new unflattering feature: apparently, I have a relentlessly negative self-image that I constantly reaffirm by placing myself in challenging or futile situations wherein I have little hope of being successful.

I had no idea that I did that. I suppose some of the blame for this lack of self-knowledge can be laid at the feet of my ASD. In fittingly autistic fashion, my self-awareness exists in two mutually exclusive states: hyper-self-obsession to the exclusion of all other stimuli, or complete dissociation such that I cannot perceive the effect my activities are having on my mind and body. Neither of these lends itself to productive self-reflection.

But autistic or not, no-one likes to engage in the kind of self-reflection that entails confronting the possibility that their preferred company and experiences might be of a pathological nature. By the time one approaches the middle of her life, give or take a decade or two, she would like to think that she’s worked out the kinks and set aside the worst impulses (or at least mitigated them); that her patterns now do little harm and maybe even a bit of good. Once settled in, why would she want to start kicking over rocks again? I mean, dangit, it took a long time to figure all this stuff out. The last thing anyone would want to do is start over, pulling up trees and digging out grass, knocking down that fence over there and putting a new one up over here. That just sounds like so much damned work.

For the last two years, my proverbial yard has needed a lot of uprootings, replantings, and fence relocations. So any time I came across anything that wasn’t actively causing me physical or mental pain, I put it on the shelf of stuff I would look at some other time, in the future, after I got through whatever particular crisis had crashed in front of me that week.

But now, two weeks after this final surgery (I suppose a “so far” belongs in this sentence somewhere; consider it implied), no new flaming pile of wreckage has landed in front of me, nor are there any others forthcoming (see implication above). I have a relationship with a wonderful ape who has patiently allowed a sweet but somewhat obtuse TG Ape to convalesce at his house for going on three weeks with no sign of a loss of interest. I have a circle of incredibly supportive apes willing to help me with anything I need as I recover. I have even managed to find a telecommuting job in my field. It doesn’t pay much, but it’s enough to keep me going while I look for something long term.

I am secure. The dust has cleared. And as such, that poor, overloaded shelf upon which I kept stacking the not-immediately-pressing stuff has promptly peeled of the wall and been evacuated of its contents like a rotted roof beset by two feet of snow.

All of the usual players in my inner growth resistance movement arrived immediately, megaphones in hand. Petulance at having to dig through another difficult mess. Self-pity because of the circumstances that led to its accumulation. And, of course, fear. It’s one thing to be made aware of one’s own self-destructive behaviors. It’s another to know that for whatever reason, one is ill-equipped to avoid the same pitfalls in the future.

How am I supposed to know when I’m setting myself up for failure? How do I know that I won’t find new and creative ways to self-destruct that seem right just because they’re different? Most worrying, how will I know which people to distrust in the future? My record on that is zero to pick-a-big-number. I just can’t tell. If I want something badly enough, forget being able to perceive subtle warning signs. I’m already compromised enough in that department; add a generous helping of single-minded tenacity and what little awareness I do have is easily overwhelmed.

My friends and family have done so much for me already. How do I explain to them that I need what amounts to an adult baby-sitter when it comes to making these kinds of evaluations? Part of me bridles at the idea that I, who have struggled so mightily to learn how to function independently, have to finally face up to the fact that when it comes to certain, basic-human-instinct things, I will always have to rely on other people’s perceptions above my own. Another part of me wishes that I could just sit down and hand it all off to someone else and thereby completely absolve myself of responsibility for my own well-being.

Because what a lot of people don’t know about high-functioning autism is how incredibly tiring it is. I used to run myself into the ground just going about the daily tasks of adult life. By the weekends, I had too little left to even answer my phone. I couldn’t understand why I couldn’t handle a “normal” (allowing for a little flexibility as to the definition thereof) workload. Now I know why, and I’m much stingier about borrowing from the future to keep myself on my feet. This is probably to the good as far as my health is concerned, but the result is a significant reduction in daily productivity.

If I have to manage a doctor’s appointment, a couple of errands, and a load of laundry all in a single day, that will completely tap me out. Likely as not, the laundry won’t make it to the dryer until the following morning. My efforts to compensate for this limited productivity led me to develop all sorts of time- and/or energy-saving workarounds, such as cooking a week’s worth of food every weekend because I will often be too tired to do anything more than operate a microwave by the end of a typical weekday. (Also, there’s a handy ASD trait that allows one to have no problem – even look forward to – eating the same thing every day. Lucky me.)

Now it appears that I have to acquire and assimilate on a whole new set of skills among the thousands of other ones I’ve painstakingly stacked and arranged in such a way as to enable me, at a considerable cost but one I’ve been willing to pay thus far, to go about the business of normal functioning. And I don’t want to. I’m already so exhausted by just doing what I’m doing, and it took years for me to figure out even how to manage this rather low level of independent competency.

And I should add that I remain perniciously frustrated by the fact that there doesn’t appear to be any sort of cosmic balancing or score-keeping going on. I’ve been through so much this last twenty-seven months. When do I get to stop? When do I get to take a break? When will I have learned enough to stop learning for a little while and enjoy the fruits of the painful lessons already suffered?

I suppose the answer is never.

F*ck that damn shelf.

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surgereve

Despite still being exhausted after the most challenging semester of school of my entire life, which now encompasses a full ten years total of post-secondary education, the day before my second surgery I was buzzing around like a four-year-old on Red Bull, fidgety and angry for no good reason.

I didn’t figure out why until I broke down in front of a small group of friends about it that evening. Someone asked how I felt about going through with another major surgical procedure the following day and I started crying, surprising even myself. “I’m so scared,” I whispered, not realizing it until I formed the words with my lips. “I don’t want to be in that much pain again.”

That’s what defines this entire experience; what has defined my life for going on three years. Pain. Constant, relentless pain, varying only by degree. That degree had been considerably lessened since my last surgery, but it was by no means undetectable. It is still extremely difficult to sit in a chair or ride in a car for more than a half an hour. Even the right shoulder – the one that was repaired last January – still complains mightily at having been denied the opportunity to fully recover before being put back on the roster due to deterioration of the functionality in the left.

Pain, ever the rude interloper, has never left me. It has moved from place to place inside my body. Its severity and influence have been considerably blunted in the last few months. But it’s still here, waiting in the recesses of my physical consciousness, too fond of this house in which it’s made a home to evacuate now. And I can’t help but anthropomorphize it, give it a voice, an ego, drive, a goal.

I feel like it’s just been waiting for me, daring me to embark on yet another attempt to extricate myself from the constant pain and fettered physicality that has saturated every aspect of my life for over two years, so it can open its toothy maw and start screeching again, reveling in laying me low, in pushing streams of anguished tears out my eyes, in making me hate myself and my life and everything around me like it did before.

Pain changes you, but it’s more than that. Pain changes everything. It changes how clothes feel, how foods taste, how lights shine. As it increases it takes the rest of your senses with it, turning up the intensity on every aspect of your environment. Soft becomes scratchy, bright becomes blinding, loud becomes deafening. And there is nowhere to hide, because it’s all coming from inside your body, a relentless fire alarm from which you can’t escape, with no way to shut off the flashing and blaring.

I’m not just scared. I’m terrified.

My last post-surgery experience was a hell through which I wouldn’t send the foulest creature on earth. There was no pain control whatsoever for the first six days. I awoke from surgery feeling as though my shoulder blade was in a wood-chipper that was still going, blades thrashing away at the sinews and remaining bone. I was then loaded down with hydrocodone, which added sickness and dizziness to the excruciating pain without mitigating a shred of it, and sent home. Only after six days of unrelenting torture was I able to convince the surgeon to allow me to take something else. It was another full week before I could consider my pain anything like under control.

And this was hot on the heels of fifteen months of barely relieved pain ex nerve entrapment, which apparently was but a mere training period for dealing with the aftermath of that surgery to scrape out bursitis, slice through muscle and saw off bone in an effort to prevent the nerve from getting caught again.

I know I need to do the second shoulder; have known for months. While it is still another year or so away from becoming debilitating, the scraping of bone on bone has been getting louder and more intrusive with each passing week, and I am less and less able, or willing, to rely on it. I could do the surgery now, six months from now, a year from now, but it is going to have to happen, and it seemed to both me and my physical therapist (or it did a few months ago, anyway) that the less functionality lost prior to the procedure, the better.

But twelve hours away from what will be another two weeks of pain that exceeds the capacity of my [considerable] vocabulary to describe it, I suddenly didn’t want to go. I was curled up in M.S. Ape’s arms last night, huddled in the dark with him in the center of our enormous bed, trying to not to cry, afraid to let him go, to go to sleep, to let night pass through and step aside for the next day. It’s going to be OK, he said, stroking my hair. We’ll get through this. I’ll take care of you.

I know he will, as best he can. But he can’t bear the pain for me, or soothe the resulting distress expressed as snappy, thoughtless aggression from a captive animal. I’m scared, not just of the pain, but of the asshole monster I become when I’m in it. I don’t want to be that ape. I can’t believe I’m willfully signing on to place myself in that position once more, and with an audience, no less. M.S. has never seen me like that, and I don’t want him to.

Momma Ape and Therapist Ape both assure me that it won’t matter, that he will understand. At this point, I have to trust them. I have to trust a lot of other apes, too: my surgeon, the anesthesiology team, the rest of my friends and loved ones. Because I’ve learned that when I’m in that much pain, the one thing I cannot trust is my own inner resources to bear me through, because they aren’t enough.

And that’s what’s different this time. I’m purposely embarking upon a procedure that I know I cannot manage alone, asking others to help me ahead of time, and having to have faith that they will come through for me after the fact. It’s one of the hardest things I’ve ever done. It’s one thing to ask for help once you patently are in need of it. It’s another to ask beforehand, knowing that you are completely reliant upon its delivery afterwards, at which point you will be entirely unable to compensate for the lack if it fails to materialize.

Faith in other people. It’s a bigger hurdle than it should be, I imagine. But here goes anyway.

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return of the ape

I am sitting on the edge of my bed, staring at my newly-framed, 2015 diploma.  It was a gift from Momma and Poppa Ape, getting it mounted; they kept meaning to get it back to me but we always forgot when I was over.  Poppa Ape finally remembered yesterday, and I brought it home to my apartment last night.  I still don’t know where to hang it, so I put it somewhere relatively safe from feline interference, which happens to be directly across from the bed, leaning against the wall on a long, low, cherry bureau that probably used to be a coffee table, now repurposed as a supplemental linen closet.

I didn’t realize how unlikely my accomplishments were last May, when I walked across the makeshift stage centered in the basketball court of the campus colosseum, my long list of scholarships and awards trailing the billowing of my flimsy robe. Knowing what I know now, I am still in a bit of awe at what I went through to secure the framed document in front of me. I’m grateful I couldn’t see what was waiting for me when I started out. If I had, I’m sure I would have balked at the oppressive workload, the extended timetable, the debilitating bouts of fatigue, the pain and resulting disability, the Asperger’s discovery.

Instead, I overlaid the obscurity with all of the wonderful things that were going to come out of this second degree, the opportunities, the accolades, the successes, the multitudes of high-paying career options.  We apes are an optimistic bunch when it comes to our own capabilities; I personally seem to have a special propensity for inflating my prospects to epic proportions.

For many, this sort of fantasizing helps keep them moving along when things get rocky. But for me, it’s best not to get too invested, if I can manage it. This past May I walked off that stage thinking I was on the fast track to a career in research.  I thought I could do anything I set my mind to, no matter what had happened to my body. I thought I would be an outstanding graduate student.

Silly T.G. Ape.  Will I never learn?  Why didn’t I remember what happens when I try to take control of my own fate?  Better to try to herd cats.  Big cats, like mountain cats.  From inside the pen.  Where I’m the only food-sized mammal and they haven’t eaten in a few days.  None of us has any business going up against fate’s capriciousness, any more than the twig against the proverbial flood. (No-one ever talks about what became of the twig, you may notice.) Thick or thin, green or brittle, rooted or drifting, it makes no difference.  There’s no avoiding the rocks.  Least of all for this great ape.

It was one week ago that I received the official diagnoses. One week from today, I will have a second surgery to try to prevent what happened to my right shoulder from happening to my left. And this afternoon, I will submit my notice of intent to withdraw from graduate school, with absolutely no idea what it is I am going to do next.

and so begins Book Two.

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getting to work

So now I have officially graduated, and have been back to work in the lab for a little over a week. The days are long, but my shoulder, while not entirely pleased, has thus far refrained from laying me out as it has in the past. Surprisingly, it is the “good” shoulder that has been giving me the most trouble. And while I realize that means the surgery to fix the “good” one the same way the “bad” one was fixed in January should probably occur sooner rather than later, I’m not ready to sign on for a fresh dose of nightmarish post-surgical pain and an additional six months of immobility just yet. I’m hoping it can wait a year. Or three.

I still can’t do anything that involves carrying something like a purse, backpack, or tote bag on either shoulder. I still can’t lift anything very heavy at all, nor anything moderately heavy for more than a few seconds. But my range of motion is back, and light-duty activities are fine as long as I don’t overdo. Most important, I’ve started to swim again.

Not a lot – nowhere near what I used to consider a regular workout – but I don’t care. Even a few minutes is heavenly. I had been afraid my body would forget how to do it. Not how to swim, of course; I’ve been doing that for far too much of my life to lose it in less than two years. No, I was afraid I’d forget how to distance swim, the smooth, economical crawl I used to use when I was swimming a mile or more, before I embarked upon the now infamous endeavor of intense training that catalyzed my injury.

About six or seven years ago, back when I first started to swim again as an adult, I could barely make it a lap without having to take a break, gulp air, and wait for my heart to stop slamming at my throat so I could do the next one. I thought that’s where I’d be when I came back to it this time, but that didn’t happen. On the contrary, I pushed off the wall and my arms and legs went right into it, as though I’d never stopped. At first, I was afraid to swim more than a dozen yards, but the last time, I completed a hundred meters before my muscles informed me they were done. I stayed in the water for a while afterwards, floating on my back and staring at the sky, thinking, knowing.

I’m back.

I never thought I’d be back. I had long since ceased to hope I would ever get clear of the pain and disablement that has so compressed my life the last two years. I had grown accustomed to the smallness of my existence. The fear that I would not be able to swim, to work, to live normally, had become an integral part of my thinking and being, so familiar that it no longer registered as unusual or different.

It is only now, as it has begun to dwindle, that I realize how much space that fear took up inside my body and head. For a long while, I had thought, or hoped, rather, that it would vanish all at once, a ridiculous fantasy that belongs dropped by the side of the road where I left it so many months ago. I didn’t expect this tiny but inexorable leak that has only recently lowered the water level enough for me to be able to measure it.

I have learned so much about myself. What I can’t do. What I can do, and endure, which is both less and more, respectively, than I had imagined. My imagination, which I had put such stock in as a poet and songwriter, turns out to have been under-qualified for the task of predicting how much I could take and how strange it would get.

I have learned that my strength of will runs far deeper than I thought. I have learned how and where to apply it, too, as well as where not to apply it, although I have not been completely able to extract myself from a number of futile efforts just yet, particularly when it comes to something important to me.

I have learned where my boundaries are.

Before this happened, I couldn’t see any boundaries. They were there, of course, but I acted as though they weren’t. The edges of where I thought I could go seemed far enough away that I never concerned myself about running up against them. I didn’t expect them to suddenly spring out of the ground and knock me flat, high walls of stone that I could not – will not ever be able to – scale no matter how I tried.

But I’ve learned there’s enough room inside of them to live, and moreover, to live well. More room than I thought, when I was face to face with them, my back turned to still-broad landscape they encircled. I used to think seeing and acknowledging boundaries meant failure. I was stingy and reluctant in accepting the few I had encountered before this happened.

I am surprised at how content and comfortable I have become inside them. Strangely, I feel more free than I did without them. It is as though I had been too exposed before, intimidated by the virtually limitless stretch of earth that extended around me in all directions. Now that I’ve found the fences – now that I’ve learned to accept that there are fences – and I feel safer and more serene. I know exactly where I can and cannot go. I’m no longer hampered by the anxiety of worrying about how far I “should” be able to go, the things I “should” be able to do.

I am physically fragile and always will be. I am a high-functioning autistic and always will be. I can’t make those things any different than they are for the trying; if I could, I certainly would have done so already, considering how many years and immeasurable amounts of energy I’ve already invested in it.

Now, I can see how to care for myself as a human, this human, this great ape. I had been worried that I would never be able to have a real career. My HFA allows me to work normally, but leaves me ill-equipped to manage more than an hour or two a day of the social interaction nearly always inherent therein, which [finally] explains why I always burned out when trying to work full-time before. But working in research, I can be in the lab nine or even ten hours a day and still count my total time spent communicating with other people in mere minutes. It is perfect for me, and better than that, I enjoy it and am happy doing it.

I never thought I would stop hating this maladroit, easily damaged casing that carts me around. But it turns out to have an advantage; it requires less activity, and less strenuous activity at that, to keep it in optimal form. I cannot take what’s considered the right amount of exercise (for the average person) or I will stress it to the point of injury. A couple of workouts and a few extra trips up and down the stairs is more than enough, and rather than being resentful about it, I can be grateful for it, because I can work more, and rest more, the former being necessary for the next few years, and the latter likely forever.

As much as I used to value how self-sufficient I was in all respects (or thought I was, anyway), it’s not so bad to have learned how to get through life leaning on the people around me when I have to. It forces me to stay connected to my fellow humans, to be friendly to everyone I come into contact with, because I never know when I’m going to need help with a door, or something on a shelf, or, as happened just yesterday in the lab, moving the tank of water I had just refilled from the cart back to the sink.

It’s probably even a good thing that I can no longer sit in a car for hours on end, so intent on getting where I was going that I never paid attention to the scenery flying by. Having to take breaks every hour or so of a long drive means fresh air and a chance to enjoy wherever I happen to be, to acknowledge the fact that it’s really not the end of the world if it takes a little longer than it should to get where I’m going, and that the route I chose might not be the absolute best way to get there. Because who is really paying attention to that besides me, anyway?

I think it is that last bit that has been the most important lesson of all. My god, I used to be in such a damn rush, and it all had to be so perfect. My late entry into this science career only made it worse; I had to graduate on time, had to take the hardest classes and get the highest grades, had to accept every commitment offered, had to invest a full complement of time and energy into each one… there’s no way I could have kept that up. If this hadn’t happened to me, something else would have, and who’s to say it wouldn’t have been worse, in timing, or severity?

I didn’t think I’d ever get to a place where I felt lucky, or grateful. I used to rail so hard against people who’d been through similar ordeals and claimed they felt that way, because I just couldn’t understand it. I was so angry, so full of despair, and I could not conceive any other way of thinking about it. I wanted to know how they got to that peaceful place. The self-important trumpeting about simply being there seemed worse than useless; it felt smug and insincere.

But I can be sincere when I say that there are times, brief and infrequent thought they may be, when I feel blessed, and full of gratitude, for the life I am able to have despite everything that’s happened.  More and more often, I don’t feel diminished by this but enriched, by what I’ve learned and who I’ve become.

Of course, I still have anger, and sorrow. I still have a lot of resentment to work through. It’s not fair, what happened to me. These kinds of things never are. I don’t have an explanation for why it happened, or what the higher purpose was, because there isn’t one, not for me, and not for any of us. But there is a way to get to some peace about it, and this blog has been my documentation of that journey, the “how” I searched for so vainly for so long, preserved for posterity for those still searching, still in the weeds, still suffering, still eclipsed with despair.

My journey isn’t over yet. There is still another surgery; there will still be more pain, before there is less. There may very well be pain forever. But it doesn’t matter; I know I can take it. I’ve proven I can, over these last nearly two years.

And if I can, so can you.

Even though stories never really have ends, I feel that the important part of my experience is what has already been written here on this blog.

I have finished posting, at least for the moment (probably), but I will make sure this site stays up, for those who come after, who are undertaking their own painful journeys, in hopes that it makes them feel a little less hopeless and alone.

Thank you, to everyone who has been commenting, following, and lurking. Your eyes have been my solace through these dark days and nights, the many obstacles, the few triumphs. I could not have done this without you.

Sincerely,

This Great Ape

Posted in Aspect III | Tagged , , , | Leave a comment

not my fault

As I read more and more about my autism (for new folks, I was recently diagnosed with Asperger’s, an Autism Spectrum Disorder or ASD), I am, for the first time in my life, seeing my life experiences clearly. All of my difficulties, particularly in social and emotional settings, are explained. But my emotional reaction to this, which the literature affirms is not subject to the same executive control as those with non-ASD brains, bubbles up and overwhelms me, and I keep having to stop, let those emotions run through and out, and then dive back in and keep going.

So many things. I won’t provide a list, but the overview is that where non-ASD, also referred to as neurotypical (a word I am reluctant to use, as it seems somewhat derogatory to me although I can’t figure out why), people have dials for focusing and managing attention and emotions, people with ASD only have an on/off switch. As in, you get it all, or you get nothing.

Our ability to understand which feedback coming in we should pay attention to, which we should habituate to, and which we should be sensitized to, is severely impaired, as is our ability to flip back and forth among these. Executive control over emotions and attention is all but nonexistent, although many of us have learned to mimic the signs of it, by hiding our emotional responses from observers, or adopting postures that give the appearance of paying attention to someone even when distractions have made it impossible to do so.

At least, that’s what I do. I can’t actually pay attention to you when there’s a television on in the background, but I will face you, maintain the right amount of eye contact, and occasionally nod and insert the proper verbal encouragement to keep the conversation going when I detect that the pitch of your voice has gone up and is followed by a gap of about a half a second or so. (In a restaurant, if there is a television, I will get to the table first so I can sit with my back to it.) Most people do not have to learn this behavior as adults. They were so young when they learned it that they don’t remember it, and certainly, never broke it down in the way I just did, into a series of steps I must consciously execute, although I have grown so skilled at it that it (hopefully) appears natural.

People used to make fun of me, or worse, call me rude, because they would be talking to me while the TV was on and I would get pulled away by the television and miss what they were saying. But now I know it wasn’t my fault.

People still find it odd that I take things literally when I’m not supposed to, and disparage me for it. I’ve tried to get better about it, because I thought it was a flaw I needed to remedy. But it wasn’t my fault.

People have pointed out that my monotone way of speaking about emotionally fraught situations is callous and off-putting. But since my only choices are no emotion, or far, far, too much emotion, that’s not my fault, either.

People, even my own therapist, have accused me of becoming overwrought at situations that do not merit this response, and that it is my fault for letting myself get spun up. I have spent years trying to fix that. But it’s not my fault that I’ve had so little success.

People have made fun of me when it comes to losing things, dropping things, not being catch things thrown at me, bumping into things. I have developed elaborate routines to try to fix this, particularly the first, in an effort to be more “mindful.” But it’s not my fault that I still have so much trouble.

People accuse me of ignoring them when they’re trying to get my attention, after having called my name or motioned to me, more than once, and failed to get a response. I thought this was because I was too self-centered, and have tried to maintain a better awareness of my surroundings. But it’s not my fault that it still happens.

Learning to drive a car remains the most difficult skill I ever had to master. Being aware of every single thing going on around me while driving at the same time is a task to which my mind is uniquely ill-suited. It took me three times as long to do it as it did most of my friends, who were on the road mere days after learning the basics in the parking lot. Granted, they learned on automatics, whereas I had to assimilate a clutch and a stick-shift. But even so, my progress was painfully slow.

I dreaded when my mom would come to pick me up from high school and I, already exhausted from a day of unproductive interactions with my peers who understood me not at all, would frequently dissolve into tears or throw a temper tantrum when I would see my mom sitting in the passenger seat. (Needless to say, this reaction rarely yielded the desired result. I usually wound up having to drive home anyway. Momma Ape never has been a pushover, and thank goodness, because who knows how much longer it would have taken otherwise?)

Now I know that all of the things that created that response, from the exhaustion, to the reluctance to have to perform what was a much more energy-draining exercise for me than it was for most, to the all-stops-pulled emotional reaction to these feelings, was not my fault. I wasn’t being hysterical or immature. I simply couldn’t help it.

So many things I berated myself for, time and again. So many times I vowed to become less self-centered, less emotional, more mindful, to pay better attention… if I’d been a neurotypical person, how much of my life would have been so completely different? How many more friends would I have?  How many more fulfilling, life-long relationships?  How much less abuse, intentional or otherwise, at the hands of my associates and peers would have occurred?  As sensitive as I am to such things, as deep as my sense of personal responsibility runs, how much of a better (I know, I shouldn’t say better) person, employee, friend, daughter, sister, girlfriend, would I have been?

My whole life, I’ve run up against situation after situation where I didn’t behave the right way and I always, always thought it was my fault, that it was something wrong in me that I needed to fix. I couldn’t understand why was it that these types of things kept happening to me, and why I had to expend so much effort to do what seemed to come so naturally to other people.

But it wasn’t my fault. I won’t say all of it, but most of it was truly beyond my control. And it doesn’t mean I don’t have to learn how to be better. But years and years, practically an entire lifetime of self-flagellation over all of this, over something that I couldn’t help, has left me with a self-esteem that is tenaciously, cripplingly low. And I’ve been this way for so long that I despair of trying to lift myself up.

I’m angry at everyone who ever made me feel bad about myself, even my close friends, who stayed friends with me despite a veritable pattern of self-centered obtuseness; even my family, who loves me dearly in spite of my strangeness; even people who tried in different (and largely unsuccessful) ways to help me, I’m angry at all of them. Always, the implication was that I wasn’t applying myself, wasn’t trying hard enough, when I was trying, so, so very hard, and wasn’t successful, and couldn’t understand why, and was left with no answer that made sense, other than that I was a fundamentally flawed human being, unworthy of friendship, unworthy of love.

And when you think of yourself that way over and over again, year after year, decade after decade, how do you come back from that? I only discovered that it wasn’t my fault just in the past few weeks. A few weeks against thirty-some years of negative self-talk buttressed by negative feedback from those around me. No wonder I’m so upset. No wonder I’m so angry. I’m grieving.

I’m grieving for that poor little kid inside me, so misunderstood, even by me, who never had a chance, who sustained so much blame, so much bullying, who tried so hard to do the right thing and couldn’t understand why she kept failing. I’m grieving for me, now, adult me, for the ten-plus years spent painstakingly recording and memorizing social interactions, learning what empathy what was supposed to look like so I could properly express it, and continuing to run into situations where I came up short and was blamed for it, and berating myself for still being so selfish.

It’s ok. I keep telling her, keep telling myself, over and over, trying to soothe myself, another task for which my brain is far less capable than most people’s. You’re not bad. It wasn’t your fault. You don’t have to feel this way about yourself any more. But I feel as though I’ve been imprisoned all this time for a crime I didn’t commit, and suddenly the door has just sprung open. And I’m afraid to walk through it, to walk back out into the world; I’m afraid people will not believe me when I tell them I’m innocent, no matter how much literature and research about high-functioning autism I throw at them, no matter how many times I try to explain it (and I’m a really good explainer – too good, providing far more detail than most people care to imbibe). And I can’t do anything about that, and I have to get over my emotional response to it.

But it’s really, really hard. It’s huge and overwhelming, and I don’t know how to even come at it. And knowing that that is not my fault, either, doesn’t help at all.

Posted in Aspect I | Tagged , , , , , , | 1 Comment