nothing I do

I’m not supposed to be thinking about things I can’t do. I’m not supposed to wallow. It’s not good for me. I want to do the right thing. I want someone to tell me what that right thing is, and I will be happy to do it, no matter what it happens to be. But I can’t see it, and I can’t hear it. I just have to guess. And often, I don’t ever find out if I guessed right or not. I could be wandering down a road that leads to a dead end and not know it until I stumbled right up against it.

I drove down to be with my sister’s family for the 4th of July. I hadn’t seen them in a long time because traveling has been so difficult. I love visiting them. They live much farther away from a major city than I do, and I adore the uncluttered views of the mountains, the friendly people, and especially getting quality time with my sister, her husband, and my niece, all of whom I love and am so grateful to have in my life. I planned this trip over a month ago, having successfully made a drive of similar length back in May. It was going to be the perfect 4th; lovely weather, a cookout, good people, fairgrounds, fireworks.

It’s 9 PM on July 4th, and I’m here all right, but instead of eating too much barbecue and watching fireworks with my fingers in my ears, I’m sitting in my hotel room, alone, while A Capitol Fourth plays on TV. I made the mistake of making a plan, and as usual, my injury took that opportunity to remind me how wrong I was in thinking I could take control of a single day in my life.

I woke up this morning a little after 5 AM in a great deal of pain, in both shoulders, probably (although not necessarily) due to yesterday’s drive. It was significantly more pain than usual, and rather than quieting down once I got up and moved around, as it sometimes does, it instead grew more belligerent as the morning wore on.

Nonetheless, I stupidly thought I could handle it. I figured I’d relax at my sister’s for the first part of day, lie down for a bit in my hotel room, and then head back out with the family for the cookout and fireworks. I went over to their house around 10 AM. By that point, I had decided to double up on the usual pain meds. After all, it wasn’t like I’d be performing brain surgery; it wouldn’t matter if I was a little more spacey than usual.

But I might as well not have bothered, because despite the extra pills, the pain increased steadily the rest of the morning and into the afternoon. I hung on through lunch, and then laid on the floor of my sister’s living room with a warm compress, cushions, and my cervical roll, chatting with her while she made sweet biscuits for the cookout. But the positioning and the compress didn’t make make a bit of difference.  By 3:30, I reluctantly went back to the hotel. A couple of hours later, bone-tired and hurting, I texted my sister with my regrets.

Then I called Momma Ape. She is my go-to for reassuring me that I am doing the right thing when I decide not to do something because of my shoulder. I know that she will always insist I was right to prioritize taking care of myself. She doesn’t want me to wind up in her situation, which is considerably worse than mine.

She and I are alike in a lot of ways, both of us inclined to brush aside our body’s warning signals so we can keep doing do whatever it is we want to do.  Without a Momma Ape of her own watching over her, she ignored her pain, or did things in spite of it, for a long time. She doesn’t want me to make the same mistake, a mistake that left her with a much more damaged vehicle than the one I cart around.  So I know I did the right thing, and she reaffirmed it.  But despite her reassurances, I still feel guilty. And lonely, and sad.

Tomorrow, I know I will feel better. I’ll be able to go with my niece to the pool and lounge in a plastic chaise while she splashes around like a little fish like I did when I was her age. I’ll be able to cook homemade tomato sauce and meatballs with my sister tomorrow night. But tonight, watching the fireworks on TV, the camera panning over people singing along to the music and waving flags, all I can think about is how I wouldn’t have been able to do what they did, ride the subway downtown, sit outside on the Mall all day, and cheer and dance in the warm summer evening. There’s just no way.  And I wonder if I’ll ever be able to do those things again.

This is the real downside to this injury. Not the pain, or the inability to perform certain tasks that I used to be able to perform, or even the physical and psychological side effects of all of the medications. It is the frequent and arbitrary sentences of solitary confinement. It is the many times I wind up staying in, alone, while friends and loved ones go out and enjoy themselves.

Their evening passes in a flash of company and fun, while mine drags on, minute by monotonous minute, until I decide it’s late enough to go to bed. And because I’m not moving much, my pain level stays at a dull roar, and I get stuck in my head, hating myself and my life, working myself over about my decision to bow out of whatever party, or dinner, or other evening activity I am missing out on.

Because life is happening out there while I’m confined to my cell. People are with other people, especially on a holiday. They are celebrating, hanging out with friends and family. That’s what you’re supposed to do on holidays. Be with people. Have experiences. Take pictures and share them on the internet. Life isn’t supposed to be lived from inside a room, peering at the rest of the world through windows and screens. It’s not supposed to have these gaps in it where I get yanked away from things I want to be doing, as though I were attached to pain-induced solitude by a rubber band that snaps me back whenever I try to stretch it too far.

And, perhaps worst of all, absolutely nothing I do matters.  Not to my injury, not to me, and not to anyone else. It doesn’t matter if I accept this or not. It doesn’t matter if I go out or stay in. It doesn’t matter if I work or not, or sing or not, or go to the gym or not. It doesn’t matter if I keep plans or break them. It doesn’t matter what city or town I’m in. It doesn’t matter what color my hair is. It doesn’t matter what I’m wearing, or whether my bedspread matches my rug, or if I hang up my clothes in an orderly fashion in my hotel room rather than leaving them wrinkled in the suitcase.

It doesn’t matter how many things I place my hands on that I can ostensibly control; my car, my weight, my toenail polish, the perfect cookie recipe, the obsessively drafted and edited blog post, just so I can feel like I’m handling this, so I can delude myself into thinking I can control what happens inside my body, too.  But I can’t.  None of it matters at all.

My shoulder is f***ed up, and that is what controls my life. Not me; it. There are rare and precious good days, where the pain is low and it doesn’t tire me out too much, and I can run an errand or two and maybe even go out for a short period of time in the early evening. There are hideously bad days where it takes so much effort to steer around my pain that I’m wrung out by the early afternoon.

Most days are somewhere in-between, but no matter what kind of day it is, it’s such a long way from here to the kind of functional I would need to be to work full-time again that I can’t even conceive of a way back to it. My progress, if there is progress, which I’m deciding that there is because I’m unwilling to deal with the alternative, is moving so slowly and imperceptibly that at its current rate, it will be another year or two before a 40-hour-work-week is even feasible.

But if I could count on that, everything would be easier. If I knew, for a fact, that by 2016, I’d be able to go back to teaching, I could handle this and all that goes with it. But I can’t, and I don’t. And that makes it all so much harder to deal with, the pain, the loneliness, the fatigue, the fear. Because in order for me to be able to handle it, it needs to have something I can put my hands on. And no matter what I do to try to fool myself into thinking that it has a handle and I am grasping it, I’m not. I don’t have my hands on anything. And nothing I think or do, or don’t think or don’t do, will change that fact.

I’m wallowing. I’m not supposed to wallow. It’s not good for me. But what else can I do?  Without a future to plan for or a friend to talk to, I don’t know what else to think about. At least I have this blog; I can’t imagine how much more depressed and crazy I’d be without it. I’ve been able to make an hour go away by writing this, and now it’s late enough to go to bed.

The fireworks are over. Another holiday f***ed up by my mindless, tyrannical injury. Because it controls my life now. And nothing I do matters.

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 nothing I do

  1. christellsit says:

    Always remember that YOU matter. You described exactly how I felt about this holiday … no social activity and again no live fireworks. Oh, I do enjoy the sight and sound and feel of live fireworks. I guess we are lucky that we can watch them on TV. Today will be better for both of us. You are going to be okay. You are doing it right. And you are deeply loved.


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