I’m officially, completely unpacked. All boxes have been emptied, everything I’ve decided to keep has found a home, either here or in my storage unit, pictures are hung, and box cutters, tape, markers and tool kits are finally put away. Even though it’s still not familiar, the place feels like mine now. I’ve made it into a little oasis; clean, warm, quiet, safe. During the day, it fills with light from sun up to sundown, but at this hour darkness still enfolds; here and there a light peeks out from an adjacent building window, and every so often, a few cars will swing their headlamps through the traffic circle below, like electric toys snugly bound to curving tracks.

I like being up this early, even on weekends. My pain level is low, and I’m at my most productive in the early morning hours, and the pre-dawn has a privileged peacefulness about it, like a magical garden that only exists in the suspended slip of day before the sun comes up. I’m sure I need more sleep than I’m getting, but it’s hard to sleep late. I get uncomfortable, shoulder, upset stomach, stiff neck, soaked sheets, any of those will cling annoyingly to me as I lay in bed and try to fall back asleep. Sometimes I manage to get there, but more often I don’t. Today, I’m up early on purpose, though; my family is coming over to celebrate a belated Christmas and my birthday, which is tomorrow.

I’ve never had a place nice enough to host family, or anyone else, for that matter. But now I have actual rooms, a kitchen, a living room, and a dining room of sorts, a sunlit area by the kitchen I’ve marked off with a room divider that is already defaulting as the preferred spot to hang out and chat. One of my felines is also a fan, leaping onto the table and parking her furry butt on one of the woven placemats at every opportunity, forcing me to half-heartedly shoo her off onto the floor, an exercise I will grow tired of long before she does. She will sometimes use it to get up to the breakfast bar, and since I’m not using the breakfast bar for eating, I’ve allowed her that. She’s there now, stretched out on her side and busily licking a paw as I tap away on my laptop at the kitchen hutch nearby.

This family gathering is the last big “thing” before my surgery. Up until now, I had been able to hold off thinking about the procedure; there was some giant obstacle in front of it blocking my view, like finals, or the move, or the holidays, or unpacking. But now, there’s nothing but open road between me and it. I don’t have anything else left to gnaw at with my restless thoughts, and so the surgery and all of its possibilities and implications are getting pretty well chewed.

I had thought I was resolved, but now, doubts are starting to stir and rumble. I was expecting to undergo another MRI which would show, or at least from which could be inferred, some hard evidence that my condition is what the surgeon says it is, and that what he proposes to do, which is remove a chunk of my scapula, will have the desired effect. But a phone call with him yesterday disabused me of that; no such scan exists. From what I can gather, he’s basically going in on a hunch, avoiding laying out specific parameters of what he will do until he gets there. Since that phone call, the possibility of it not working, and my shoulder being permanently deformed for no reason (not that it isn’t already, for all practical purposes), seems very real.

I’ve never undergone a major surgery before. But even if I had, it’s unlikely to have prepared me for a procedure in which a part of my body will be destroyed rather than rebuilt. And unlike with the nerve ablations, once that part of my scapula is gone, it’s not going to grow back. A friend of mine recently had a hip replacement and raved about how his daily pain level was down to a one. He was hoping it would encourage me, but it has done no such thing. How many hundreds of thousands of hip replacements have there been? It’s one of the most frequently studied and performed bone surgeries. He’s actually the third person I know who’s had one; it’s far from uncommon. The outcome was no surprise, or not to me, anyway.

The procedure I am considering, on the other hand, has been performed so rarely that there is almost no research or data on it at all. (I looked, of course.) The surgeon who is performing it has himself only done it a handful of times. Friends have suggested a second opinion, but from whom should I get one? There isn’t another surgeon who does this kind of work anywhere in the tri-state area, and certainly, I’m in no condition to travel any farther than that just for a consultation.

I’ve asked everyone I know what they would do in my place, and the majority come down on going ahead with the surgery, albeit with trepidation. But that’s what I thought, too, when I was thinking about it in the abstract. Now that I’m about to be divested of a slice of shoulder blade, I’m suddenly possessive of every scrap of my casing, unwilling to part with any of it, no matter how dysfunctional, just like I was with my mental framework before this happened. I’m resentful all over again at my injury and subsequent loss of free will, illusory though such free will may have been. I’m furious with other people who get to choose their own paths in life, or jump from one to another seemingly without consequence.

My life has been nothing like that. It’s been nothing but swift and heavy consequence any time I stray from my predetermined course, that consequence all the more cruel for that I don’t know what the predetermined course is supposed to be, and often think I’m following it only to discover, after being knocked on my ass, that I’m not. There is a sickening familiarity to all of this. I don’t know what the right thing to do is, and what’s worse, if I don’t do the right thing, a deep penalty will undoubtedly be exacted.

On the face of it, it seems ridiculous. I’m considering allowing someone to hack off a part of my body, and a rather important one, at that. Not that I’m getting much use out of it right now, but the fact remains that it is still marginally functional. Who knows how that might change once its shape is permanently altered? I mean, if it wasn’t supposed to be shaped the way it is, shouldn’t evolution have taken care of that some time in the last 100,000 years since a branch of primates decided to try out the bipedal thing? It’s not exactly a vestigial accessory, like a few pieces of vertebrae left over from when we found tails useful. We are a heavily tool-dependent species. The upper extremities have been carefully honed over the last several millennia. Who am I to second-guess nature with such a drastic remodeling?

It certainly doesn’t help that my pain is down now that I’m not spending an hour and a half sitting in a lecture hall five days a week. Despite my frequent interaction therewith, the memory of how bad the pain gets fades quickly once I can collect a smattering of days where I can keep it under a seven. I chose to schedule this surgery a few weeks before the end of the semester, when my daily pain level often blew past an eight by mid-afternoon. I may not be up for having this done right now, but a few weeks into next semester, I could very well wish I had been.

And it does seem telling that one of the only half a dozen surgeons in the country with experience with my condition happens not only to be located here in my area, but also happens to be the one orthopedist my pain management specialist recommended to me when he wanted input on my injury presentation. I’ve learned to ignore such coincidences at my peril. But the fear… the fear is significant. What if it doesn’t work? Clearly, things are getting worse back there. The last nerve ablation barely made a dent. Considering that trajectory, I’m not sure I’m prepared to deal with an outcome of no effect.

And what if it does work? I’m used to being disabled, now. If I get surgery and it fixes it, what happens to all of the trappings of my life as a disabled person? It took me over a year to grow accustomed to my permanent state of disrepair; true acceptance was fairly recent. I don’t know if I’m ready to undergo another sea change so soon after the last one. Not to mention that my other shoulder is proving more resistant than I had hoped to trigger point injections and physical therapy; those work for a week or so, and then the pain comes back, a stubborn knot of muscle radiating its heated discontent from my deltoid to my ear. How do I negotiate the jump from one injury to the other? Yes, my right shoulder has been fixed, but…

So I fix the left one, then, I suppose. So what part of my body will break down after that? While there’s no reason to think I’m starting down an ice-slicked slope, there’s also no reason not to think that, particularly considering my family history. Some people have single injuries, recover, and that’s that, but that’s not how Momma Ape and I do things. There’s always the danger of setting off an avalanche. Once I decide to start down this road of surgical interventions, where does it end?

I don’t want the gray in-between that is the likely outcome of this procedure. I either want to be well, or not well. Not a little better. Not a lot better but still not-quite-right. Not better but now this other part of my body is screwed up because of what I did. Just one or the other, like a binary switch; on or off; a one or a zero. That’s what I want. And life just doesn’t work out that way. (Well, unless you get a hip replacement, apparently.)

I’ve only recently grown accustomed to the range of gray my life has come to inhabit. It’s not great, but it’s mine and I’m used to it, and I’ve learned how to work within its scope. I don’t want to trade it for a different one and have to start over from scratch. I feel like I never get to settle in to anything; as soon as I’ve figured out how to handle something, it gets yanked away and I’m saddled with something else. With regards to the surgery, at least, I have some modicum of apparent choice in the timing, if nothing else. I can choose to put it off, although, that, too, may have untoward consequences.

No doubt there’s some crucial information missing here; I need more puzzle pieces to become available before I can get an idea of what the eventual picture should look like. But we’re closing in on the mile marker; the surgery is twelve days away. Whatever other information there is to be had, it had better come along pretty soon. Because with what I’ve got right now, I can’t see which way the signs are pointing.

Or maybe it’s that I don’t want to; that happens a lot. How many of my missteps occurred as a result of my willfully ignoring the signs I didn’t like? Either way, I hope something comes along to burn off this fog before I have to jump from the cliff. Isn’t it better to know how far down the chasm goes? I always think I’d rather know how many seconds I’ll be in free fall before I hit the ground.

But maybe, this time, I’m not supposed to. Something else I’m being forced to learn against my will; another narrowing I’m forced to endure, another road blocked, another comfort ripped away. Other people get to lean on their coping mechanisms, rather than being punished for them, but not me. As soon as I put down roots somewhere, I get dug up and tossed somewhere else. Like it or not, and usually, like now, not.

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 unsettling

  1. christellsit says:

    Sigh. The grey area – I don’t know why you and I find ourselves there too often with regard to our bodies? You take first prize with this surgery. I’ll give you that. But, at this point, what else is there that would make sense for you to try? The morning you described sounds like reason enough to have the surgery. Maybe you can ask the doc for permission to talk to a few of his patients if they are willing. In any case, we will be here for you in whatever capacity you need us. Let’s count on success. You are going to be okay. Look at where you are living! That worked out really well. You found that wonderful place and no one took it away from you. You are settled in and it is yours. It’s really yours. Think about that.

    Liked by 1 person

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