“I Hope They’re Managing Your Pain.”

At the risk of throwing my partner under the bus…

PART ONE.

Continued tomorrow….

(PS: If you can’t start your week by becoming a monthly subscriber, simply share share share to help keep this work going for free! Thank you Word Nerd friends!)

I stared at the “pain control” sign under the TV in the hospital room this week.

A goal in white board sharpie that most of us are used to seeing, but know doesn’t mean as much in ink as it seems.

One of the kindest things that fellow long-term sick patient-friends will say to me to me when I post about any medical crisis is:

“I hope they’re managing your pain.”

The white board says “Pain Control” but it feels like a fantasy through the fog- something sworn to, but never delivered.

I had a cervical spine disc replacement a few years ago with a different doctor (who I loved, by the way, but not the distance to get to him), and I ended up having to choose communication over pain control.

It was during the pandemic, so no one was allowed with me… and my amazing interpreter had to eventually go home to sleep.

The meds made my eyes too blurry to use pen and paper effectively, and this is where a Deaf patient is backed against a wall between “to suffer” to “to understand”.

Which would you choose?

I chose the latter.

Since I was alone, I was my only advocate, and because I’m not “just a spine patient” I can’t just relax into the dreamless river of a pain-drip. Instead, I have to worry if I’m getting my two heart meds twice a day (my Dad, who is also a heart patient, would very much agree that’s top priority), or that my CF treatments aren’t forgotten, and so on.

At the risk of throwing my partner under the bus…