team of one

My impressive run of cookie successes has been broken by the deceptively simple bar cookie. Two batches have had to be thrown out, and a third seems destined for a similar fate.  The center remains in a near raw-cookie-dough state, despite being baked for double the prescribed amount of time.  It’s now ensconced on the bottom shelf of my fridge, but I don’t have high hopes; it was still quite gooey when I finally gave up and stuck it in there late last night.

Two days ago, on the advice of a friend, I dipped my toe back into songwriting. I fired up the software, hooked up a keyboard and mike, and cobbled together a verse and a pre-chorus. Then, suddenly tired, I shut it all back down. My heart wasn’t in it. Deprived of my primary songwriting vehicle, the acoustic guitar, I’m stringing notes together practically at random, creatively rudderless, unable to derive any pleasure from the lackluster results.

And in physical therapy today, my third reevaluation was almost identical to my first and second ones, performed ten and five weeks ago, respectively. Flexibility: improved. Comfort/stamina in seating position: slightly improved. Strength: no improvement. Afterwards, I was in too much pain to do my regular strength exercises. The same exercises I’ve been doing for fifteen weeks, apparently in vain.

It’s all so damned tiresome. I’m sick of it. I’m sick of this string of identical physical therapy sessions, day after day, week after week. I’m sick of putting myself through excruciating massage therapy to get relief that never lasts more than an hour or two, and sometimes makes me feel worse instead of better. I don’t even know why I’m doing these things any more. It doesn’t feel like they’re helping. It doesn’t feel like anything is helping. The slate of things that I am able to do has been stuck at its current amount since the nerve ablation, and those things are still harder and more complicated than they have any right to be, and still take far more time and energy than they have any right to take. And it’s no longer cute or interesting. It’s just wearing me down.

Even my current pain doctor has run out of solutions for my inability to herd together more than four or five hours of unbroken sleep.  (Correction: last night, thank heaven, I actually got it up to six-and-a-half.) I’m supposed to call another pain specialist for a second third opinion, but I’m dreading it. The number of treatments I’ve endured is absurdly large, particularly considering how ineffective most of them have been. The only enduring feature of my pain symptoms is their utterly random variability in strength and location. I have to keep all of my prescriptions in a written list because there are too many for me to reliably hold in my short term memory. I’m not sure I have the energy to start all the way back at the beginning to bring yet another specialist up to speed.

There was a summer day camp I used to attend as a child. I was so young I barely remember anything about it other than ponies and dodge ball, and I only remember the dodge ball because there was one time, when my cohort was playing another cohort, where I somehow managed to be the last kid standing on my team.

The other team, pretty much at full capacity, for some reason could not eliminate me. I don’t know if they were lousy shots or if I was just having a good day, but it continued on that way – me against seven or eight other kids – for quite a while. Occasionally, I’d be able to tag one of the opposing team and get a teammate back, but that teammate never lasted for more than one or two rounds. After this happened three or four times, the counselors called the match, and I remember I got special recognition for staying in the game so long.

Just like back then, I’m the only one on my team now, dealing with the balls that keep getting flung my way. Every once in a while, a friend can come in and spell me out for a turn or two, but then she has to go back to her own life and I’m stuck fending for myself again. Yesterday, I stopped by a big box store on my way back from the rheumatologist to pick up some cat litter. It wasn’t the usual place I go, but I was running low, and it just happened to be on my way home. It was inside a shopping mall. I didn’t think anything of it going in. I didn’t realize, until I was on my way out, that that meant I wasn’t permitted to take my cart into the parking lot.

I was suddenly apprehended by the very real possibility that with the other bag I was carrying, I would be unable to get the 25-pound box of litter from there to my car.

I had parked in a handicap space, using my hang tag. It was about fifteen yards from the mall entrance. There were a couple of employees hanging out outside who may or may not have seen me struggle to get the box of litter from the doors to the curb. I stopped and set it down perhaps ten feet from where they were standing, and looked out at my car. It seemed impossibly far away. I should have asked them for help, but I didn’t know what to say. It was late afternoon – too late for me to be out running errands, really – and I couldn’t get my fatigued brain to construct a suitably brief explanation as to why I couldn’t carry the box myself.

So I picked it back up and dragged it out to the car alone.

I know I shouldn’t have. It’s no better for me to overload my good side than it is to bear too much weight with my bad one; it throws my spine out of alignment, which places undue stress on my back and neck.  The last few steps were agony.  After hoisting the litter into the car, I climbed into the front seat and rested my head on the steering wheel, exhausted. Goddammit. I can’t even do a simple errand by myself any more. I felt defeated. Just as I had when I left the massage therapist on Friday, the doctor on Monday, and the physical therapist this morning. Because what’s the point? Why bother doing the right things if they aren’t helping? Why avoid doing the wrong things if I’m not going to get better anyway?

I don’t know how much longer I can keep living my life like this, every single task requiring an in-depth evaluation of the circumstances at hand before being attended to, by me or someone else, or perhaps not at all, over and over and over, as weeks stretch into months that threaten to stretch into years. And of course, everyone keeps telling me not to do things myself if I don’t have to. Except that more often than not, I do have to. Even when I don’t want to.

It’s not that I don’t want to call someone up and ask him to pick a prescription for me, or haul my trash can to the curb, or get the 25-pound box of cat litter out of the back seat of my car, where it still sits. It’s that I don’t have anyone to call. I’m a single woman in her forties, living alone. All of my friends work, or are parents, or both. I do not have daytime companions available to assist me with the little things.

Or rather, what they consider to be little things; for me, that category is decidedly underpopulated. So I do them myself. Because it’s easier that way, psychologically, if not physically. Because I can’t go another day staring at my dirty floors; I can’t put off picking up that prescription; I can’t wait until the weekend to get more cat litter. Because my pain level and recovery progress seem only tangentially related to whatever I do or don’t do, and in that case, I’d just as soon do that stuff myself rather than trying to figure out how or when I could get someone else to do it for me.

I see other patients in various medical and therapy offices with their spouses or children to drive them, carry things for them, keep them company. But not me. I’m all alone, with my purse loaded down with forms, meds, food, and water, in addition to the usual purse things, plus another oversized bag holding seat and back cushions so I can sit in a chair in the waiting room if I have to wait.  I drag this baggage through round after round of this frustrating game, and I don’t know what prize waits for me when I finally reach the end of it, if it ever ends, which I’m starting to suspect it won’t.

Today is June 19. In two more days, it will have been eight months since I started this ordeal. I suddenly recall sitting in my swim coach’s office last Fall, wearing a cervical collar, a week or two after the initial pain onset, explaining that I was going to be out for another three or four weeks and would have to drop out of the class.

Another three or four weeks.

Back then, I was still looking forward to getting back to my usual activities once this had run its course. Back then, I could still imagine what it would be like to pick up where I’d left off. Back then, I was still able to occupy myself with planning around this minor setback. Those thoughts are long gone, my former way of doing things grown faded and hazy, like a dream I woke up from hours ago, fragmented, senseless.

This isn’t the dream any more. This is real. It’s not a game. It’s my life. Managed or not managed, by me, alone.  That’s how it is, and that’s how it’s going to be.

I’m going to go call that new specialist now.  And pack up my things for another round.

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.
This entry was posted in Aspect I and tagged , , , , . Bookmark the permalink.

1 Response to team of one

  1. christellsit says:

    I am so, so sorry. I wish I lived close. Though i can’t do a lot I could at least go with you to some of those appointments. I could just be with you. I want to be there for you every day for as long as it takes.
    As for the failed song writing attempt, I’m not surprised. Very likely you will find a new way to write songs but it feels too soon for that. You’ll know when the time is right. Be gentle with yourself. I love you.


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