OK, so I've been dropping not-so-subtle hints that I'm going to be sharing something big this week...
Before I do, though...indulge me in a little storytelling....a little peek into my memories as we start to set the much-bigger-than-me scene.
January 2018
“Can you tell me,” the nurse asked, “what level you pain is at right now?”
I’d just come out of a double-vertebral fusion, my fourth spinal surgery in three years, and the first round of post-op meds were definitely wearing off.
“Here,” the nurse continued and dangled a laminated number line at me. “It’s like a rating, see?” He indicated the increasingly angsty, grimacing emojis. “Are you here? At a seven? Or an eight? More?”
Clearly, typical people find pain scales useful. I, however, am not typical.
“I’m on the autism spectrum,” my voice croaked with effort. “Those things just don’t make sense to me.”
The nurse cocked his head to the side and folded his hands. “Ohhhh, autism….okkaaay.” He paused and began in a very slow, very sing-song voice. “So, these pictures help me to know if you need medicine. On this end is person number one. He isn’t hurting at all! Next…”
“The issue isn’t cognitive impairment,” I interrupted. “It’s autism. The whole concept of subjective qualitative comparison presupposes universal agreement as to baseline and/or extreme experiences. They require too much theory-of-mind and perspective-taking.”
At my last admission, I’d actually been delirious from pain. DIdn’t know my own name. Later, after I was cognizant, the ER staff wagged fingers. I’d just been to my surgeon’s office a few days beforehand. Why I hadn’t I spoken up then?
Except, I had tried to communicate what was happening inside me. I was in utter anguish, and I’ve got to admit, I thought it seemed pretty obvious. But then again, my expression doesn’t always accurately match up with how I’m feeling. That’s an autism thing.
I’d literally crawled down the hallway floor in search of the patient bathroom. And my autistic mind inherently presumes, on some level, that if I know something — others do, too. So if I knew I’d been on my knees on the carpet, staff knew, too, and they must’ve decided things weren’t too bad.
And I hadn’t chosen “number ten” on the scale because that face label read, “Worst Ever,” and even though I couldn’t stop screaming and was losing feeling in my legs, how could I have been certain if it were the worst I could feel? Or would feel? Or did they mean anyone could feel? Or was it has felt?
“You see,” I pled to this new nurse, “maybe my number ten is someone else’s six. Or maybe the other way around? There are infinite interpretations of those terrible cartoons. A basic pictograph. A genius IQ. And nothing but a gulf of lonely otherness in-between.”
“Right,” he said, then took a breath and turned to his computer. “So, can you tell me what level your pain is at right now?”
“No,” I whispered and blinked back a tear. “No, I guess I really can’t.”
(To Be Continued....)