“This Just Isn’t Sustainable For You”

But first: thoughts on myelograms

Read this first, then scroll to the bottom to watch the full video of sick, sociological, and career related theory, taken whilst recovering from the below-mentioned myelogram

THANK YOU to those helping this independent memoirist continue to work by upgrading to paid (which also helps my goal of gifting this every-weekday-writing-world to anyone who asks for a reading scholarship, no questions asked)

I have had more CT myelograms than I can count.

“We need to find a way to not have this gastric pacemaker,” my neurosurgeon said.

“We were just talking about that at the myelogram,” I told him: “When we turned it off during the spine surgery you did, I couldn’t keep even broth down. When they turned it back on, I ate a meal. We looked it up… They STILL don’t make an MRI compatible one.”

“This just isn’t sustainable for you,” he said, recognizing that as a patient with (essentially) a degenerative spine condition, physicians who need to check in on the nerves and the discs is critical. But myelograms are lumbar punctures with the chance of a spinal fluid leak thrown in.

I’ve had (as an approximated number) a minimum of 10 lumbar punctures in ORs, of varying kinds; Likely more. Of that many, I’ve only had one spinal fluid leak that led to the infamous CFS headache that had to be fixed by blood patch…

Until a couple of weeks ago.

But first: thoughts on myelograms. Here is why I think they are extra awful for a Deaf person and why I wish we had an Ativan thrown at us or something. There is nothing more anxiety inducing, as a Deaf human, than not having eyes on what’s happening behind you. By design, an LP requires lying perfectly still on your stomach, waiting for a needle to go in your spine, then contrast, then the table tilts around as needed while you have to keep your body still. For me, fighting the instinct to turn my head and see what others are saying or (mostly) just the muscle-gut to want to know what’s happening out of my line of sight is … all encompassing.

Telling your muscles to hold still when you’ve done this many LPs and then more deep joint and deep nerve injections (not just the friendly steroid kind) than you can put into words. Multiple per year… All on my stomach.

The fight or flight doesn’t get better with “knowing what to expect”, it gets worse.

And in fact… Knowing that unexpected things you could never imagine WILL happen is worse.

▪️Part One

Was having hand issues this week thanks to cervical stuff, so this footage [above] did not get captions. Still (likely naively) hoping Substack has the technology built in (every website should by now so the burden isn’t on the digits of those who might struggle), but if anyone needs a transcript- can later provide!

Since the world HAS the tech to do it, it needs to build captions in, so badly.

Anyways…. For now, kindly consider a Share, Like, Restack, Forward to a Friend, Post on your Socials: All love is… Love

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