So I wanted a field trip, and now I am on one.

The drive was predictably bad. I took a full twenty minutes for my first break, but only fifteen for the second, and the third and fourth were less than five. There’s a dearth of good places to stop along the latter portion of the drive, and it was too unpleasantly hot to go for a walk, as I had on the first two breaks. Also, I just wanted to get here. Whenever I made this drive in the past, I didn’t bother to stop at all, and it would take well under three hours. This time, it took over four.

It was worth it, though. This is the view from my room:

View from Bay Resort Motel Room 5-2014

I drove Momma Ape’s truck, a large, black SUV covered with an assortment of stickers ranging from liberal to subversive.  In particular, there’s a white decal in the rear window depicting a large dinosaur chewing a bunch of stick figures, with the caption, “YOUR STICK FAMILY WAS DELICIOUS.” I was the one who affixed it there for Momma Ape, but I was still surprised by how much enjoyment I derived from it while sitting in traffic, nearly always in view of a car with a smiling family of stick figures of its own.

Importantly, the truck also has handicap license plates. But every time I pulled into a designated space, I felt like a kid who has snuck into a candy store after hours and is sampling her way through the bins. I couldn’t shake the discomfort that comes with breaking a rule. While there isn’t much competition for handicap spaces in the off-season, I still felt slightly embarrassed as I hoisted myself out of the SUV with my left arm. My self-consciousness insisted that I make a show of favoring my right arm, avoiding partaking in even minor load-bearing activities that are generally manageable, such as carrying a purse or a bag of fast food.

I do not look disabled. I don’t use a walker or wheelchair, I have no brace to support a defective appendage (although I do, in fact, have a defective appendage), I have no limp, no other obvious ambulatory impairment, and as such, no obvious need to take a parking space right next to the door. When an elderly couple pulled into the space next to mine during my second break and shuffled to the entrance of the restaurant, I stayed in the truck, unwilling to present a comparison between their belabored toddling and my own straight-backed progression.

The straight-backed walk, incidentally, has come about as a response to the shoulder injury. My posture, never spectacular even when I was in my teens, had only degenerated over the course of my adulthood such that my head jutted forward, my back had a perpetual hunch, and my shoulders rolled inward. But since my nerve injury, I have been forced to adopt a pressure-relieving conformation rarely seen outside ballet studios.

This is one of the reasons I need to be able to park close to entrances; I tire easily from the effort it takes to hold myself up in such an abnormal [for me] position. Five-plus months of having my shoulder locked in place, plus compression and resection of the nerve, have resulted in significant muscle degeneration in my upper and lower back. Couple that with an inborn tendency for my muscles to become inflamed after anything more than slight exertion, and you have a prescription for frequent and unavoidable exhaustion.

So, in fact, I do need that parking space, even though I don’t look it.

Of course, it’s also important to note that I am still a very poor judge of what I actually look like. In my mirror at home, I’ve grown so accustomed to my emaciated frame that it looks perfectly healthy to me. I even felt a pang of dismay when I was finally able, due to the gain of perhaps five pounds, to retire the extra-small leggings and size-2 jeans. It wasn’t until I wandered into a surf shop here and started trying on summer clothes that I realized how hideously skinny I still am. My bones make up a much greater proportion of my body mass than they should. This isn’t obvious in a sweatshirt and jeans, but it is brought to frank and unflattering relief in a sundress, or worse, a bathing suit. I am now the proud owner of a cute little checked bikini that I may never actually wear.

Self-consciousness notwithstanding, I’m glad I came. I’ve discovered that the tension and stress I feel at home, whether from final exams, or a poor performance at physical therapy, or even just having to use the side of the counter as leverage to open a jar, makes a noticeable contribution to my pain level. Despite the long drive yesterday, after resting for an hour in my room, I was loose enough to head back out and do a little shopping. (And eat frozen yogurt for dinner. After all, I really, seriously, need to gain some more weight.)

I don’t know why I’m so surprised that my pain level has gone down a degree while I’m out here playing hooky. If I were talking to me, the effect of stress would have been the first thing I would have pointed out to myself. Well, actually, knowing me, I probably wouldn’t have pointed it out, since I’m already having trouble circumventing my guilt about my condition and the concessions I’ve made as a result. For someone to assert that I’m making my pain worse by taking on stress would be decidedly unhelpful. Because just as I was incapable of releasing the muscles that clenched in response to the nerve pain, I am incapable of releasing the mechanisms that respond to a stress-inducing environment.

I still have expectations for myself and my performance that are too high. A woman I met at a support group who I’ve taken on as a mentor suffered two brain tumors and subsequent surgeries in her forties, and was forced to reinvent her life around it. Now, a couple of decades removed from that event, she is a valuable resource for me as I stumble through the early stages of my own disablement. Her experience was strikingly similar to mine – she pushed herself to achieve above and beyond her peers for over ten years until she received a full-on, physical smack-down and had to readjust. When I asked her how she learned to manage her expectations, she explained that it’s a self-limiting process. You keeping pushing at your fences until you have the locations memorized, and then you gradually get used to the new order of things.

I’m running into fences all over the place. But rather than getting used to it, I continue to expend too much energy either trying to move them or being angry that I can’t. I know it’s not the best allocation of resources, but I don’t know how to stop doing it. And so it’s no surprise that every few weeks or so, I crash emotionally and slip into a psychological abyss for a few days. It took about two years for her to adjust, my friend said.  And I only had the ablation procedure less than two months ago (and it may not be the last one). But the idea that I could have another twenty-two months of bumping around this mental obstacle course is daunting. And frustrating.

When I talked about my anger, though, she expressed to me that she is still able to dredge up her own anger about what happened to her from time to time. “Go ahead and be a bitch,” she advised, “it works for me.”  She talked about how she still struggles to maintain a sense of gratitude that she still has a good amount of physical function. I feel that, too. I don’t choose to open doors with my right hand, but I could if I absolutely had to. I can still drive a car; she has double vision – all the time – and cannot.  (Or rather, should not, I should say.) Things could be so, so much worse.

Of course, they could be an awful lot better, too, and my friend reassures me that it’s perfectly normal to be angry about it. I need to get over myself, she affirmed, and stop trying to suppress the negative emotions that well up as a result of being disabled and in pain all of the time.

There are my expectations again, and there’s another fence.

So there it is. I’m furiously upset about this and I’m still prowling about in search of an escape hatch that isn’t there. I don’t have the spiritual wherewithal to be grateful, right now, and I may never get it. But there is another goal, and it’s far more manageable, and that is to forgive myself for it. Forgive myself for lowering my expectations, forgive myself for not achieving peace and serenity, and forgive myself for being human.  For being, heaven forbid, just like everyone else.

Be just like everyone else. Isn’t that what I’ve wanted all along? That one, I should be willing to accept.  Gratefully.

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 unexpectations

  1. Chris says:

    Oops. Yes, you are human engaging in human thought processes and feeling human emotions. Those were my exact thoughts, emotions, and actions after those license plates were applied. I still feel guilty about taking that handicap space at times. (Really, I should be over that by now.) You’re doin’ it right. Warm, gentle hug.

    Liked by 1 person

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