Hey TGA, why haven’t you posted about your pain lately?
Indeed, why haven’t I? It’s not like I don’t still have it. But it’s crossed a line, now, into that previously elusive territory known as “manageable.”
Of course, I’m wary of classifying anything in my life at all as manageable, because very little actually is. I can’t even count the space inside my body in that category, as the last couple of years have so aptly demonstrated. The sum total of stuff I have control over is comprised of the dead surfaces on my meat suit and those contained in my living space, and perhaps my car, and… and nothing. That’s pretty much it.
Well, that’s not entirely true. There is a space that is purported to exist between my ears that I supposedly have some control over. And I do think, with the help of many friends, therapists, and Momma Ape (and TNC and MS Apes, too) that I have learned to get a hold of certain negative thought patterns and processes before they spin out of control. (Sometimes.)
For instance, right now, I’m in the tenuous position of probably being physically well enough to work while mentally uncertain if it’s practical to try to do so. Not to mention that MS Ape and I have been having conversations about life-changing events that may or may not occur between us in the next few months, complicating the issue as to how long I can skate along working from home as a writer supported in part by parental apes because I’m making practically no money at all, as I refuse to enter into a financial partnership with someone without being able to contribute in some way to expenses.
But instead of getting hopelessly entangled in my own crazy via the rantings and ravings of my autistic, anxiety-loving psyche, all that fulminating has yet to exceed the dull roar level. This is in spite of the stepping down of pain medication that I’ve been undergoing at the same time.
Right. Sorry. Back to my pain.
That’s what this blog was started for – pain. Because I was in so goddamn much of it, all the time. I needed to write so that it wouldn’t swallow me up. I go back and read some of the early posts from 2014 and I am horrified at what I went through, and how long I went through it. But now, countless misdiagnoses and mistreatments and then finally two corrective surgeries later, that pain is subsiding. Recently, I stopped taking the extended-release muscle relaxant at night, and while the first few nights of that I barely slept, I’m now often able to sleep unassisted as long as I’m not in too much pain.
I can’t believe I just wrote that. And what do I write next? I wanted to transition this blog into a blog about my autism, but it’s far from the neat, decisive break I had planned on. Instead, I have all of this leftover morass from the pain and suffering I endured, now spread with a thin layer of guilt at having emerged into a space that is, or will be, relatively pain-free.
How do I talk about what a glorious feeling it is to take medication for pain, and have that medication actually work? How do I recount with glee how much I love being able to help MS Ape unload boxes from my car into my storage unit? How do I wax poetic about placing an ice gel on my shoulder and fifteen minutes later, having my shoulder genuinely feel better? How do I do these things without feeling as though I am leaving behind countless others whose pain has not yet been – may never be – relieved?
So many people don’t understand the first thing about chronic pain. They dismiss sufferers as histrionic whiners who just need to suck it up and get over themselves already. And I’m different, not in that I have that pain, but because I know that pain, and through the act of writing this blog, have remained intimate with what the day-to-day is like for someone in that much pain. Right now, I could step sideways, ratchet my own discomfort up a few pain levels, and be right back in that space, perched on an emotional and mental edge, where the slightest disturbance in my environment or routine tips me over into free fall into an abyss with no bottom.
So perhaps what I should be doing now, since I’m no longer in that much pain, is advocating for those who are, stepping into the role of going to bat with doctors, therapists, and insurance companies for others the way I was forced to learn to do for myself. But I don’t know what that looks like, or if my education and autism limitations would allow me to pursue such a route. I have discovered, over these last few weeks, that I need a job that is primarily a telecommuting commitment. It is so exhausting to go out and interact with other apes that if I have a limited supply of energy to do it with, I’d rather spend the fuel on friends as opposed to co-workers.
But I feel like I need to do something. While I can genuinely say that I value the amount of personal growth I’ve experienced as a result of my ordeal, I want it to mean something on a larger scale. It meant so much to me to be able to be helpful to others in chronic pain by giving them this blog, something to relate to, something to think about, or at least something to distract oneself from the hideous, blaring space that pain forces one to occupy. Now divested of the original impetus for writing it, I feel like I’ve lost something important, even if it was something that I prayed feverishly to be quit of.
Where is that something? What is that something? And why do I feel like I “deserve” it? What makes me so special? Because of course I think I’m special. Nearly all apes consider themselves special, I suspect, at certain times in their lives. While my experience is unusual (to say the least), it isn’t unique. What makes me think it’s my job to pick up the flag and carry it to the parade?
Maybe what my job really is is to get over myself and remind myself where my fences are, and how grateful I was to find them, courtesy of what can technically be classified as a birth defect, if a rare (and even more rarely pathological) type of malformation. Maybe I just need to write what I feel, and what I see and read, and how I respond to it, and this blog will never have more than a few followers who may or may not remain interested. And maybe I need to be comfortable that, with being a small voice, ordinary, one among many, not all that special at all.
Dare I think I’d rather have pain than have that? Does that make me an awful person? I don’t know. All I’ve been through, and I suddenly feel like I know less instead of more.