Despite still being exhausted after the most challenging semester of school of my entire life, which now encompasses a full ten years total of post-secondary education, the day before my second surgery I was buzzing around like a four-year-old on Red Bull, fidgety and angry for no good reason.

I didn’t figure out why until I broke down in front of a small group of friends about it that evening. Someone asked how I felt about going through with another major surgical procedure the following day and I started crying, surprising even myself. “I’m so scared,” I whispered, not realizing it until I formed the words with my lips. “I don’t want to be in that much pain again.”

That’s what defines this entire experience; what has defined my life for going on three years. Pain. Constant, relentless pain, varying only by degree. That degree had been considerably lessened since my last surgery, but it was by no means undetectable. It is still extremely difficult to sit in a chair or ride in a car for more than a half an hour. Even the right shoulder – the one that was repaired last January – still complains mightily at having been denied the opportunity to fully recover before being put back on the roster due to deterioration of the functionality in the left.

Pain, ever the rude interloper, has never left me. It has moved from place to place inside my body. Its severity and influence have been considerably blunted in the last few months. But it’s still here, waiting in the recesses of my physical consciousness, too fond of this house in which it’s made a home to evacuate now. And I can’t help but anthropomorphize it, give it a voice, an ego, drive, a goal.

I feel like it’s just been waiting for me, daring me to embark on yet another attempt to extricate myself from the constant pain and fettered physicality that has saturated every aspect of my life for over two years, so it can open its toothy maw and start screeching again, reveling in laying me low, in pushing streams of anguished tears out my eyes, in making me hate myself and my life and everything around me like it did before.

Pain changes you, but it’s more than that. Pain changes everything. It changes how clothes feel, how foods taste, how lights shine. As it increases it takes the rest of your senses with it, turning up the intensity on every aspect of your environment. Soft becomes scratchy, bright becomes blinding, loud becomes deafening. And there is nowhere to hide, because it’s all coming from inside your body, a relentless fire alarm from which you can’t escape, with no way to shut off the flashing and blaring.

I’m not just scared. I’m terrified.

My last post-surgery experience was a hell through which I wouldn’t send the foulest creature on earth. There was no pain control whatsoever for the first six days. I awoke from surgery feeling as though my shoulder blade was in a wood-chipper that was still going, blades thrashing away at the sinews and remaining bone. I was then loaded down with hydrocodone, which added sickness and dizziness to the excruciating pain without mitigating a shred of it, and sent home. Only after six days of unrelenting torture was I able to convince the surgeon to allow me to take something else. It was another full week before I could consider my pain anything like under control.

And this was hot on the heels of fifteen months of barely relieved pain ex nerve entrapment, which apparently was but a mere training period for dealing with the aftermath of that surgery to scrape out bursitis, slice through muscle and saw off bone in an effort to prevent the nerve from getting caught again.

I know I need to do the second shoulder; have known for months. While it is still another year or so away from becoming debilitating, the scraping of bone on bone has been getting louder and more intrusive with each passing week, and I am less and less able, or willing, to rely on it. I could do the surgery now, six months from now, a year from now, but it is going to have to happen, and it seemed to both me and my physical therapist (or it did a few months ago, anyway) that the less functionality lost prior to the procedure, the better.

But twelve hours away from what will be another two weeks of pain that exceeds the capacity of my [considerable] vocabulary to describe it, I suddenly didn’t want to go. I was curled up in M.S. Ape’s arms last night, huddled in the dark with him in the center of our enormous bed, trying to not to cry, afraid to let him go, to go to sleep, to let night pass through and step aside for the next day. It’s going to be OK, he said, stroking my hair. We’ll get through this. I’ll take care of you.

I know he will, as best he can. But he can’t bear the pain for me, or soothe the resulting distress expressed as snappy, thoughtless aggression from a captive animal. I’m scared, not just of the pain, but of the asshole monster I become when I’m in it. I don’t want to be that ape. I can’t believe I’m willfully signing on to place myself in that position once more, and with an audience, no less. M.S. has never seen me like that, and I don’t want him to.

Momma Ape and Therapist Ape both assure me that it won’t matter, that he will understand. At this point, I have to trust them. I have to trust a lot of other apes, too: my surgeon, the anesthesiology team, the rest of my friends and loved ones. Because I’ve learned that when I’m in that much pain, the one thing I cannot trust is my own inner resources to bear me through, because they aren’t enough.

And that’s what’s different this time. I’m purposely embarking upon a procedure that I know I cannot manage alone, asking others to help me ahead of time, and having to have faith that they will come through for me after the fact. It’s one of the hardest things I’ve ever done. It’s one thing to ask for help once you patently are in need of it. It’s another to ask beforehand, knowing that you are completely reliant upon its delivery afterwards, at which point you will be entirely unable to compensate for the lack if it fails to materialize.

Faith in other people. It’s a bigger hurdle than it should be, I imagine. But here goes anyway.

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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