A Last Second, Second-Wind of Surgical Nervous Energy

"For once, I can dance and tomorrow is someone else’s problem.”

Happy Tuesday, Word Nerds!

Some context if you’re new here or like a review (if not, skip right past these repeat words and go to the new post below):

My Substack is where I am able to express myself creatively, share on all sorts of topics (not exclusively sickness) and it helps me to archive this “ongoing legacy” that I HOPE is the continual memoir project I’ve started.

Here, anyone who needs or wants a scholarship gets one… because kind friends help support the writing there, even if it’s just $5.

I write (now) every Monday, Tuesday, Thursday and Friday (barring emergency… and sometimes, even then).

Why check out my column on CF News Today every Wednesday?

It’s the place where I write about illness with much less prose, and a lot more clarity. For some, this sort of “to the point” approach to medicine is refreshing when trying to understand a complicated disease, new test results, or any other sort of updates.

But here?

Here is where we (hopefully) get to hang out- imperfections, typos, and all.

Hopefully you enjoy some new words cooked up just for you?

xo

Why do I do this before every major surgery I’ve had?

I choose some sort of dancing challenge (whether a long balance or spinning for an entire song), and I try to dance as much as I can before I go under.

This was literally the night before I went under for my last surgery of 2024, days before the new year.

I tend to do these dumb things on cold muscles and without any thought beforehand. Just a last second, second-wind of surgical nervous energy that strikes at odd times of night right after I’ve packed my hospital bag and should be going to bed… and instead I think:

“It’s okay if it hurts to dance, like usual… because for once, I don’t have to preserve myself for something else tomorrow. For once, I can dance and tomorrow is someone else’s problem.”

Almost everything in “my life” (or that of those who live in adjacent somatic neighborhoods) is based around saving something for the next day.

The Cost Balance Analysis is constant.

“I can’t eat that Mac n’ cheese because I’ll get pancreatitis before the family commitment”. “I can’t ride in the car for too long or my lower back will ‘be out’ before the appointment tomorrow.”

It’s no wonder that most people with long term illness have some form of mental health conundrum paying rent in a house nearby. Like a psychiatrist I greatly respect once said: “I’ve never met someone with CF who doesn’t have anxiety, because the connection between those with breathing problems and those with anxious mind-body disorders is 100% in my firsthand experience thus far.”

How we feel IS how we feel.

(Did that make sense?)

And I’m feeling a lot worse than I often say honestly. So this week…

I’m going to start.

PART ONE.

More tomorrow!

Kindly consider booming a supportive Word Nerd if you’re able (every little bit counts) to help keep this work going…

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