I woke up this morning with the same pain I went to bed with last night. Yesterday, after a couple of hours on the beach, it was so bad that all I could do was lie on the recliner in the condo with a frozen elastogel strapped to my back and stare at the ceiling, waiting, breathing, unable to either cultivate or suppress the tears that were leaking out and down my temples.

I spent over a half an hour like that, before the pain finally receded enough to allow me to push myself slightly more upright so I could watch TV.  And that was as good as things got. This whole trip, the pain has been relentless. It feels as though someone has wedged a butcher’s knife under my scapula and is alternately pressing in and sliding back and forth. I wish it were a real butcher’s knife, and that someone would come along and slice the whole damn shoulder off.

There is a type of body dysmorphia where a person will focus on a single part of her body; its length or breadth, its curve or muscle tone, and judge the acceptability of her entire shape based on that one single place, be it the neck, or a calf, or her ears or fingers. She directs all of her efforts towards the improvement of this one body part, and yet is unable to see it for what it really looks like. Her brain takes over her visual processing and inserts an unacceptable image that perpetuates this behavior, no matter what lengths she has gone to to change its appearance.

My world has dwindled down to my right shoulder. I don’t spend attention on anything else any more; this injury has bullied in and pushed it all aside. I wasn’t in a relationship before this happened, but I’m sure my pain would have shoved that away just as callously as it divested me of the rest; independence, energy, strength, hobbies, physical activities, classes, work, career. All I have left in my life now is my family, my sanity, and a handful of close friends. All of the color has been leached out of my existence.  Which is all I have now – just existence.  All of the things that made it come to life, that made it interesting, or fun, or special, or something to look forward to, all of that is gone.

It’s eating away at what little fortitude I’ve been able to maintain. I can’t see the forest for the trees any more; whatever goal I might have deceived myself into having has slipped from view. When someone has the audacity to say to me that something good is bound to come of all this, it breaks something inside me and I can barely get away from her fast enough before my eyes start to fill. I can’t even physically take care of myself any more, never mind financially. What the hell good could come of that?

Maybe I would be better able to accept the sentiment if something was working; if I could mark some noticeable improvement, some particular exercise or procedure that was moving me in the direction of more functionality.  Instead, all I have to show for all these months of medical treatment is the few days or weeks of partial relief gleaned from injecting or disabling something underneath my scapula. I lie awake at night too uncomfortable to sleep and can think of nothing else, imagining I have an alternate presentation of body dysmorphia, where no matter what I or anyone else ever does to my shoulder, the state of disorder will never change.

And so here I am once again turning a critical eye towards the only thing I can control, which is my medications, with their underwhelming pain management and overwhelming stomach problems. When Momma Ape showed me pictures on her phone that she had taken of me and Sister Ape on the beach a few days ago, I was horrified. Standing next to my healthy, normal-sized sister, I [still] looked skeletal, not to mention quite unwell. I’m not just trapped in this injury; I’m also stuck in a pain- and medication-induced state of ill health that has established itself over the last several months as my new homeostasis.

I’ve been like this for so long that I don’t see it when I look at myself in the mirror any more. I am so accustomed to my sallow complexion and shrunken frame that I don’t even bother re-imprinting the information when I see myself reflected; I just slot in whatever I expect to see and move on. Perhaps it only appears normal because there’s no-one standing next to me to serve as a point of reference, but whatever the reason, it allows me maintain the fiction that things aren’t so bad. Confronting anew how far removed from fact that fiction is, it’s no wonder that I want to meddle in my treatment regimen, it being the only thing left in my life that I am capable of influencing in any way.

The pain in my shoulder has been so unremitting lately that it has prevented me from daring to exert myself or do anything else to disturb it. I have slowed my walking pace so I can concentrate on holding my back erect. Each morning, I look at the things I would like to do that day, pick one, and discard the rest.  This one region of my body, my right scapula and posterior thoracic, is controlling everything I see and everything I do.

I sometimes wonder if I felt that pain everywhere, would it just become normal, like the view of my troublingly underweight self in the mirror? Would that make it easier to do away with all of the medication and diagnostics?  Would I be able to reference the pain instead of encountering it anew every time my mind wandered?  Could I memorize the boundaries and just go from there?

Thought exercise aside, I know I couldn’t.  Right now, localized as it is, my pain still takes up most of my functional and subconscious awareness. It won’t let me focus on something else for more than a handful or minutes, or a half an hour, if I’m lucky. I stare into the same microscope and see the same swollen and distorted view, just like the one in the mirror, of my body, my shoulder, my life, hour after hour, day after day.

On top of that, the endless search for a cause and a remedy is wreaking psychological havoc. I’ve been ping-ponging back and forth between hope and despair for so long that I don’t remember what the center feels like. My pain is already physically and mentally exhausting; holding out hope of an eventual diagnosis is exhausting my spirit, too. I don’t want to give up too soon – quitters never win, they say – but what they don’t say is that a lot of people who don’t quit don’t ever actually win, either. How long is long enough? How many doctors, how many procedures, how many different pain medications, before the consensus view is that we’ve thrown everything we could reasonably be expected to throw at it and it’s time to give up and send everyone home?

Momma Ape has never given up, even as the injuries and disorders have piled one on top of another such that her treatments resemble nothing so much as a game of medical whack-a-mole; batting one thing down only to have two more pop up somewhere else. She was able to work part-time for much of the past twenty years, but even that fell by the wayside a little over a year ago. If I am to continue to have this limited store of physical energy, I’m not sure I’m up for continuing to invest it in an open-ended and unsupervised scavenger hunt.

I don’t want to spend the next however-so-many months (or years) like this, with my shoulder so large in my life that I can’t see anything else. I already feel like I’ve been frozen in this place for too long, my gaze fixed and focused on the same wall in the same room that I’ve been in since last October. Every time I meet someone new, be it a friend, doctor, therapist, or whatever, I respond like a plastic doll with a string in its back, expressionlessly reciting the same spiel and responding to the same questions with the same answers every single time, usually in the same order, no less. I could probably record my response and just press play whenever someone new comes along to pull my string. At least, I wish I could.

Because it’s all grown past tiresome. It’s flattened me out and left me faded, like an oddly-shaped paper doll waiting for someone to finally cut out a dress that fits properly so she can be reanimated into whatever farce of a life has been drawn for her on the paper-book pages. I am sick of waiting for the right dress. I don’t care if it’s the wrong dress any more, so long as I can pin it in a few places and make it work. I want to be reanimated so I can get on with my life, whatever farce of it has been laid out in the pages for me.  But whenever I do try to venture out – cut back on pain meds, clip on an ill-fitting dress, and go about some semblance of my business – pain stomps right in and lays me out. I’m down for a day, or lately, two or three, and then I resume a subdued version of whatever I was doing until I chafe at the limitations and throw them off again.

I had promised myself – here on this blog, in fact – that I was going to make every effort to stay in the moment because doing otherwise inevitably led to disappointment. But I’ve been at it less than two months now and I already can’t handle it. I am in constant anxiety about my future, unable to conceive of any path to independence that could be found in living the rest of my life this way. Even though my injury has defied scheduling up to this point, I still cling to the unsubstantiated hope that I just need to find the right ratio of activity to respite that will enable me to compartmentalize the pain so I can go about whatever small activities I am able to thereby manage.

I keep waiting to get something back, or barring that, something new, to look at, to feel, to experience. I still have this feeling, deep down, that if I could just put the pain on autopilot and focus on resurrecting a life from the ruins, I could infuse some purpose into my existence to enliven it again. But because no-one can definitively tell me what is actually going on with my right shoulder, never mind how long the going-on will be, I am reluctant to even attempt to build anything at all.

And so I’m stuck here, the large and deciding feature of my life that butcher’s knife at my back, with nowhere else to look, and nothing else to see even if I could turn away from the microscope to see it. Nothing in my life but my pain, my mind, and the few brave souls around me sticking it out for the long haul. No color, no diversion, no goal, no purpose, and no change. Nothing. Frozen. Stasis.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
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1 Response to stasis

  1. Pingback: done-ing | this great ape

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