never gonna get it

As I parked my car at the gym this morning, I saw a woman who had already pulled in to the handicap space next to mine. She had a permanent handicap hang tag (they’re blue; mine is red) suspended from her rearview mirror. She slid out of the drivers’ seat effortlessly and slammed the front door shut, then walked around the car to get her gym bag, slung it over her shoulder, and strode confidently up to the door, pulling it open with a solid yank that is only a distant memory for my own right arm.

I resolutely pushed the judgmental thoughts out of my head. You don’t know anything about her. You don’t know what’s wrong with her; she could be in chronic pain, too. I walked in behind her, doing my usual left hand door pull, which involves reaching across my body to open it partway, sticking my foot in front of it, putting my other foot across the threshold and then pushing it the rest of the way open with a shoulder or knee so I can walk through it.

About twenty minutes later, I started a set of leg presses on the nautilus machine. The same woman was next to me again, this time doing squats with an impressively loaded bar across her shoulders. Her back was to me, and I examined her carefully.  It was stupid, I know, but I couldn’t help it. I checked for a lifting belt or some other form of back support, but there wasn’t one. I searched her shoulders, elbows, and wrists for a scar, a brace, or some sign of weakness on one side or the other, but couldn’t see any; she didn’t even use a towel under the bar to keep it from digging into her back.

I didn’t stop there. I checked her muscular legs for a knee or ankle wrap, but she didn’t have one of those, either. After her final set of squats, my eyes followed her to another machine, checking for any sign of pain or injury in her walk. Perhaps her neck? A hip? It was impossible to tell; she showed no signs of restrained movement or physical distress, even as she climbed into the machine and continued with more leg exercises. Fortunately for both of us, I had completed my leg presses by that point and moved to a different area where I couldn’t see her any more.

I thought about her the whole drive home. It nagged me all out of proportion to its effect on my life, which is to say, zero. I suspect – but of course I don’t know – that the pass is not for her; she just used it so she could park by the door instead of ten yards away in a regular parking space. But so what?

While I was watching her doing squats with that loaded down bar, I remembered that I used to do squats just like that. It made my stomach turn to think of what that bar would feel like resting across my shoulders right now. I saw her strip the weights off of it and stack them on the weight tree with unabashed envy.

I felt as though she were flaunting her strength and her sturdy body. I felt as though she took for granted the ease with which her body moved, plugged into her iPod and humming along tunelessly to whatever she was listening to. I wanted to walk right up to her, yank those buds out of her ears, and icily inform her that if she was going to use a handicap parking space, she might want to at least pretend to be handicapped herself.  But I didn’t.  I resisted the temptation to be an asshole even as I briefly contemplated keying her car, walking around it to hoist myself into my own and drive home.

Last night, my right shoulder stung and throbbed as I tried to calm myself down enough to fall asleep. The ice pick is back, making good progress as it reaches further and further under my right scapula. My left shoulder, over-burdened and sore, has developed a cramp that I can’t seem to work out. I felt a tear leak out of my right eye and leave a cool streak as it slipped onto my pillow case.

I hadn’t realized I was crying. I don’t want to cry any more. I’m tired of it. I’m tired of bumping around in an emotional dune buggy, surging over the hills and crashing into the potholes. I’m mentally tired of everything.  I’m doing so much work, trying to teach my body how to hold itself in correct conformation, and it requires constant, exhausting diligence. How am I standing? How am I sitting? Are my shoulders hunched? Am I engaging my core to lift that pitcher out of the fridge or pull towels out of the washing machine? Is my neck stiff? Is my weight distributed evenly over my feet? Is my back twisted? Are my hips dropping as I walk? Is my head in the right position? Did I engage my levator scapulae when I reached up to pull that plate out of the cupboard or did I use my infra-and supra-spinatus muscles instead, like I’m supposed to?

If I were getting better, I’d eagerly take on that kind of detailed interest in my body’s every moment. If it was working, I’d throw myself into it as I always do when I embark on a new and challenging project, glorying in the little victories, seeing what I could learn from the small defeats.

But I’m not getting better. I’m getting worse. The high point was May, about a month after the nerve ablation. A noticeable slide began in early June. And now, I can barely sit for an hour. I don’t know if I’ll be able to keep the meager, 9-hour-a-week job I have at my father’s office. The near future is masked by a dull, choking fog; what might be months or years away is completely obscured.

I spent some time yesterday researching technical writing graduate certificates, trying to see if I could do something related to my field of interest that might lead to gainful employment with flexible hours.  But I lost interest after about fifteen minutes. Why bother? Every time I make a plan to assert my independence, it seems, something else comes along to take it away from me. Even my graduate advisor has some misgivings about my continued pursuit of the masters in education, although she’s supporting me on starting the program in the Fall anyway. I still have three classes left before I finish my undergrad, due to having to drop them the last two semesters because of the problems with my shoulder, so I need to at least go back and finish those, if nothing else.

But I still do not know what I will or won’t be capable of come September. It’s not looking promising, but I’m too beaten down to consider alternate plans. Yesterday, out with some older ladies who’ve become a bit of a support group for me, I listened to one discuss her decision to apply for disability due to her inability to work. It wasn’t the first time I had thought of it, but it was the first time I had considered it as within the range of possibilities for myself.

I can’t explain how I feel about it yet, but I can say that none of the feelings are positive. And after seeing that healthy woman at the gym today, ostensibly using a handicap parking space for no other reason than an overdeveloped sense of entitlement, I think about how unwilling I was to get my own handicap parking pass, and how unwilling I still am to take advantage of anything, and how crushing a defeat it will be if that is the only option left available to me.

I’m so damned angry. I’m angry at the woman at the gym, but that’s just projection; what I’m really angry at is everything else. I’m angry at my doctors. I’m angry at my physical therapists and massage therapists. I’m angry at all of the medical professionals who keep telling me that as long as I keep doing what they tell me to do, I will get better.

They are lying to me. They don’t really know. No-one knows. I have been following all of their instructions diligently for nearly nine months and my injury has not improved at all. Now that the nerve is moving back in, my right shoulder is starting to creep up towards my spine again. Worse, I am less and less able to favor it using my left arm, because that arm has become strained and cramped as a result, and now my left shoulder starting to hunch up and forwards, too. If I don’t get another nerve ablation soon, I will be right back where I was last October, as though the intervening months had never even happened.

That means that nothing I have done – taking the summer off, doing all of my exercises and stretches, enduring periods of excruciating manipulation at the hands of my therapists, taking the medications and undergoing the procedures that have been prescribed to me – is working. My care has been palliative, not restorative. So I’m losing my motivation to put up with any of it. What’s the point?

As I lay in bed last night, I wondered about what trade-offs I might be willing to make in order to reach some sort of steady state. Supposing this is a permanent condition, as it is starting to look like it might be, which would I rather deal with: chronic pain for the rest of my life, or surgery that would relieve the pain but leave me truly disabled, unable to lift my arm or reach over my head ever again? I went back and forth. I couldn’t decide. All I knew was that it would be hard to avoid second-guessing either choice.

I spoke to those ladies yesterday about how my faith in some kind of higher power was dwindling as more and more of my life was wrenched from my grasp. I don’t really believe that someone is looking out for me any more. I don’t pray at night any more. I just wait for the next crappy thing to come down the pike, and try to keep from developing any expectations that it will be something other than crappy, in order to save myself the inevitable heartache afterwards.

I honestly don’t know what I’m going to do if I can’t go back to school and can’t work. I will lose my scholarship, and with no other prospects, I’ll be living off my parent’s charity and nothing else, and I can’t do that forever. The thought that I will never, ever be able to be financially independent is so heartbreaking I daren’t court it for more than a moment before shoving it aside.

You think I’d be used to not getting what I want by now. And you wouldn’t think that wanting to get back to living some sort of an independent, self-sufficient life would be an unreasonable expectation. But experience is teaching me that I had better not get my hopes up. Because as soon as I decide can do something, I find out that I can’t, and I don’t want to rule out any more positive outcomes by wishing for or working towards them.

This is what learned helplessness must feel like. I finally understand it. You give up on ever hurting any less than you do now. All you can focus on is trying to avoid being hurt any more.

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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2 Responses to never gonna get it

  1. Joshua Engel says:

    It’s so tempting to think about the surgical option, just to remove the uncertainty. Objectively it’s so clear that it’s not worth thinking about until after the re-do of the nerve ablation. But it’s astonishing how damned hard it is to stop thinking about something you know perfectly well has no resolution. You want to do SOMETHING, even if it’s only thinking, and it’s impossible to convince the brain that thinking about this is actually counterproductive. It drives me absolutely out of my mind.

    Liked by 1 person

  2. christellsit says:

    What can I say except that I have been to that hopeless place of feeling complete abandonment by a Higher Power. No amount of praying, screaming, crying seems to work. The only thing that kept me going was looking for distractions though the pain and fear were always present. I am frightened for you because you have yet to find a doctor who is addressing your current state. Too bad a new doctor would not read this blog post. These days doctors don’t have the luxury of taking that time. Maybe a couple of paragraphs would do. Though I know you have pretty much given up on prayer, etc., I have regained my belief in a Higher Power, though I do have my moments. In any case, I am sending Angels and I do pray for you every day. I love you dearly, M. A. ~


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