Today I woke up at four o’clock in the morning, stiff and hurting. After spending an hour failing to find a comfortable position, I got out of bed. Every muscle surrounding my vacant shoulder blade felt sore and bruised, and the unmistakeable burn of nerve pain traced the right side of my upper thoracic spine. What had I done now?  What happened yesterday?  Physical therapy, massage therapy, and I moved a large box from the floor to the bed so the cleaning service, which I have reluctantly hired to come in every two weeks, could vacuum the rug. Was that too much? I’ve given up trying to predict. My pain is capricious; it shows up, or not, irrespective of anything I have done, or haven’t done, or whether I did my stretches, or used the ice pack or the heating pad, or how much sleep I got last night or the night before that.

I start stretching my neck, turning my head to the side and tilting my chin towards my hip. The soft tissue that attaches my shoulder to my spine pulls back, tight and defiant. Wasn’t the nerve ablation supposed to fix that? The nerve couldn’t possibly be growing back already, could it? Fear brings adrenaline, and I know, even though I can’t feel it, that my muscles are tensing. I also know, even though I can’t control it, that the tension is not helpful.

I have a three-hour lecture course today, and I have no idea if I will make it through the whole class. So far, I’ve only had to leave early once, a couple of weeks before the nerve ablation. The erratic nature of my pain gleefully defies advance planning. Sometimes I think I couldn’t possibly sit for an hour and it turns out not to be so bad. Other days I feel loose and comfortable, but after sitting for twenty minutes I’m in so much pain I lose the ability to concentrate on anything else. What will happen today? I have no idea.

Yesterday, I began a new phase in my physical therapy. This was supposed to be good news; I have increased my mobility enough to start incorporating some strength-building exercises. I was instructed to get down on all fours and practice lifting my right hand, holding it up for two seconds, and then putting it down and doing the same with my left. I could do the right hand, no problem. But when I lifted my left hand off of the floor, my right shoulder and arm shook so badly the therapist had to brace my elbow to stabilize them. Last night, I was screamingly, sobbingly upset about it. Today, I am resigned and depressed, in that numb, whatdifferencedoesitmake sort of way.

I cannot believe that my right shoulder has grown so weak. My shoulder. My shoulder. I am a good swimmer – no, I am a great swimmer. I’ve never been athletic, it’s true, but I was graceful as a dolphin in the water, making barely a ripple as I swam lap after leisurely lap.  I had notable upper body strength, at least for a woman of my small stature; I used to be able to do twenty push-ups in a row. (Real push-ups, not the women’s version with your knees on the floor.) My flexed biceps were downright intimidating.

And now, my right shoulder is so weak it can barely support even a small fraction of my [reduced] body weight.

I used to feel, accurately or not, that I was a physically strong person. Now, along with so much else, it appears the injury has stolen that from me, too. I was hoping to be back in the water by the summer, but that goal has now been pushed so far into the future that I can’t even see it. I was supposed to take my niece with me into the ocean again, like last year, but it occurs to me that I may not be strong enough now to take care of her if something should happen. In fact, I don’t know if I will be strong enough to take care of myself in the ocean if something should happen.

After all that’s been taken from me, I had my heart set on getting back that one little piece, the swimming. It was almost within in my reach, and then, just as I was getting close, it was yanked away, like a twenty-dollar bill on a string. I’m left with nothing to cling to, no goal to work towards, no reward waiting for me at the end of this awful search. Doubt clings to me like saran wrap; I’m not sure if an end will ever come, or if I would recognize it if it arrived. And the anger… there is so much anger. I’m so sick of being constantly reminded that I don’t have any control – none whatsoever – over anything in my life. I can’t even keep my own apartment clean any more without help. Is it any wonder I’m resisting putting on weight? It’s the only thing I have left that’s still amenable to my influence. I may not be strong, but I am so freaking skinny that college girls are jealous of my thighs. So there. F*** you, God.

I had the audacity to think that maybe I could get one thing back, and I put all of my eggs in that basket, only to find out it had a great big hole in the bottom of it.  Even that small comfort, apparently, is denied me.  A couple of weeks ago my physical therapist said I might be able to try some of my normal activities again in six weeks. I had assumed, although she did not say, that that included swimming.  In light of my significant loss of muscle strength, however, that now seems naïve.

We don’t realize how important it is that we feel capable of doing a certain subset of  physical things. We are accustomed to a casual, defined amount of power, opening doors, pulling boxes off of shelves, helping lift a piece of furniture, catching a glass before it falls to the floor. I struggle to do all of these things now, and it makes me feel like a decorated Easter egg, pretty and colorful on the outside, but with everything that was on the inside blown out. It’s as though I might get dropped or stepped on at any moment, and then I will break apart and even the dubious usefulness of being pretty will be snatched away, too.

I almost wish I had done enough physical damage to carry around a permanent, visible defect because then I would know, and everyone else would know, exactly where things stand. But instead I have this frustratingly opaque injury with no timeline and no touchstones for recovery and I’m mad. I’m filled with so much fury that thick, acrid smoke should be pouring from my every orifice. I want to destroy something beautiful; I want to take a tire iron to a shiny new car and trash it, wreck all of those gleaming, perfect panels, shatter all the windows, pull off the mirrors, shred the tires with my teeth. I want God himself to come down and apologize to me for this wretched, mercurial burden that I have to carry every day, this goddamn invisible albatross slung over my right shoulder that claws at my spine. I’m like some Alice In Wonderland backwards version of the Emperor’s New Clothes. I can feel them, but no-one else can see them, and I suspect even my close friends occasionally doubt my descriptions of what it feels like inside my body.

I don’t have any provocative, spiritually reaffirming things to say about this one. I just hurt. I have a deep emotional pain at the pit of my stomach and it’s so powerful it’s almost physical, and I have no-one to show it to or share it with, standing here alone in my kitchen, with my laptop perched on the breakfast bar so I can type standing up because it still hurts too much to type when I’m sitting down. I’ve had to skew my whole life like that, adopt all of these unnatural, inside-out ways of doing things because natural things cause me pain. And I’m so tired of it.  I’m sick of being special. I don’t want exceptional treatment; I don’t want to need it. I just want to disappear back into normalcy again. And now, I have no idea when, or if, that will happen.

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 destroyed

  1. I hear you loud and clear and have been there too and am still! There but for some things I have learned. I too can’t sit am undiagnosed wham bam 3 years ago the pain came and stayed. I can’t work I’ve lost friends I’ve lost my sanity at times, cried til I felt sick, thrown things in vile anger, been to tonnes of therapists and put on weight. But a few things I learned though we ‘us bloggers’ can’t just tale the pain away we are here to listen and help and give friendship your not alone. I learned not to look back and yearn for what I had I finally accepted my new life and have to work from this point onwards otherwise I was just sending myself insane. I learned to try and pace with really small steps which is hard when you’ve been v active but it is a must no boom and bust. The same goes for physical therapy you sound like MD just the tiniest thing can mess me up and set me back. For me I’ve found walking and pedometers to set goals and with this I bring in stretching and have started zero balancing which though sounds cookie has been amazing for me. I have set backs emotionally and physically but when your ready you will come to a better place to move on but losing your old life is like grieving it takes getting used to xx

    Liked by 1 person

  2. christellsit says:

    Oh, my dear Girl, I am so sorry. My gut tells me that your physical therapist misjudged your ability. I am angry at her … enraged is more like it. You know that I have been where you are too many times … feeling completely alone, bearing invisible searing pain, being slammed to the pavement after thinking that the worst was over, seeing a goal as real and then having it cruelly snatched away, etc., . Please, hold on, precious Girl. I have no answers to the why of it. But I know that you will heal. This is not a life sentence. Trust me, you are “In the Arms of the Angels” for I have called them in and they always appear at my request. My heart aches for you. Warm, gentle hug and deep love.

    Liked by 1 person

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