Disabled Chronicles, No.2j

His dark colored suit was still buttoned beneath the teal lead apron that was haphazardly thrown across the front of his body. I knew this because I could see the buttons straining to keep the expensive fabric cinched together while his elbows did a poor job of holding the lead vest on-ish/ in place. That and his tie seemed comically out of place behind the neck portion of same said vest – like a fancy fruit roll up, unfurled.

He seemed nervous, like he regretted his choice in outfit this day, like nothing he knew had prepared him enough, like maybe he wasn’t supposed to be doing this?

“… And who are you?”

I asked, further adding to his nerves, as the nurses and staff made final adjustments to my body on the procedure table.

“Oh! This is our Fellow! We can have him step out of the room if you’d like…” Doc answered before the nervous man in the disheveled suit could.

“Mmm…” I quickly mulled it over in my mind, while he began to dejectedly remove the haphazardly placed lead apron.

“No. He doesn’t have to leave. He can stay.”

Fellows are interesting humans. They go through all these years of book work, rotations and then they decide to specialize. That’s where they usually meet patients like me. My diagnosis, typically a paragraph or blurb in their books – forgotten, until they see it (me) breathed to life.

I wonder what they think when they see/meet me? Are they going through all the fuzzy things they remember about SMA? Are they surprised? Are they curious? Do they have questions they wish they could ask?

I entertain their learning because I hope I bring some humanity to their doctoring. That they realize the diagnoses they study are actual people, with lives and stories.

But that day? I’m sure he’d have stories to tell of his own: Spinraza injection was nigh.

This injection was hard won, as I was a month late and nearly out of the therapeutic dosing window. I had showed up a month earlier, having to do my urinalysis at the hospital (which is always nerve wrecking as bad labs means going home Spinraza-less) since Quest got inconclusive results on the first sample and LOST the second sample.

Needless to say, my kidneys decided August 26, 2021 was not a good or favorable day for Spinraza. And so I was all prepped and set on the gurney only to have to turn tail and go home.

I wasn’t angry or upset. Doc made a good call. My whole health comes before Spinraza. So I went home, talked it over with my primary’s office and decided we’d wait, retest and get a nephrologist onboard going forward.

Which is how I found myself a month later, on the procedure table, re-tested (thankful my kidneys seemed to be doing better), staring at this nervous Fellow.

Doc asked if I was comfortable, as per usual, I was on my left side, the space behind my right ear exposed. I assured him I was. And his work began.

Doc asked the fluoroscope tech to snap a picture of my neck. Instead of closing my eyes like I usually do, I kept them open.

My collar bones, part of my skull, the large vertebrae supporting my neck, all shadowy ghosts beneath my skin, buried between layers of fat and weakened muscle. So delicate, so fragile, so amazing. All the fighting I do to get my body the things it needs, often feels relentless and overwhelming. In those moments staring at the monitor at the insides of me, I felt beautiful in a way I don’t in my everyday. I felt glad for all the fighting I do to take care of me the best ways I know how because I got to see this as my reward.

Doc places the sticky plastic dressing on the procedure site. He tells me that the lidocaine is next. I feel the two pinches and try to relax into them.

The catheter comes next, and I don’t realize how wide the Fellows eyes have gotten until I guttural signal to Doc, then articulate that I felt something…

He asks what and I just reiterate… something… but it’s gone now.

More than likely he hit one of the nerves that I probably can’t make out on the monitor. I was watching, as the cath went in, advancing from its entrance behind my ear, slow and slowly to my spinal column.

Finally he reached his destination and informs me that he’s removing some CSF to make room for Spinraza. I tell him “Ok” and watch as the Fellow looks about ready to pass out or maybe he always has that scared look on his face?

I look back at the monitor – something is pulsing! Is that my jugular? The bundles of my Vagus nerves? Is it my spinal cord bundle?! It’s pretty far deep enough to have been any of them. I didn’t ask. I should have, cause it was AWESOME!

Doc administers Spinraza after making room, the warm familiar spread of the medication radiating on my left shoulder from the inside, the weird crunchy bubble sounds of the syringe emptying and we are done.

The fluoroscope tech switches the machine off, preps his gauze for clean up and one circle band aide for the area.

It was painless and I’m glad I got in before the therapeutic dosing window was up.

I meet my new nephrologist on November 10.

Spinraza #10 is down in the books.