“I Have Never Treated a CF Patient Before Who Didn’t Have Anxiety.”

I was told to not use words like “always” and “never”

“It’s like a chicken or an egg,” the psychiatrist said…

“I have never treated a CF patient before who didn’t have anxiety.”

“Is it because every time I am suffering, I am waiting for the larger shoe to drop?” I asked.

I’ve been suffering. There is no other way to say it. How would Lispector write it as salient shadow-oeuvre to paper? What bloodied brush stroaks would Gentileschi use to put paint to the pain? I can’t make it prettier, but I long to find a way.

If I wanted to, I could blame this recent somnambulant-silence on physicality alone (which often makes a person feel alone even when they feel selfish for feeling so, because even trying to relate to others on the feeling feels futile)… but I can’t.

I CAN in the sense that I’m daunted at the gauntlet - which is meant to borderline rhyme if you read it thrice, thusly- of liver biopsies, rigorous testing and the patté pieces of my pain’s pervasive permanence. (Why is nothing in life forever except for certain kinds of suffering?)

The last year has reminded me what I was running from all along. Before that, I truly believed that no matter what surgery sliced me south to sideways, I would be able to rebound with the right group of people, and a beautiful story to chase, and a possible pair of pointe shoes. Now… I know differently.

I am different.

The amount of loss is hard to pen honestly because loss feels like a verb that doesn’t end in its very existence.

Every song, every show, every inside joke you can’t repeat like you once would have feels a paper-cut to the part of your person that once was a person; Once couldn’t be reached.

“Is it because taking shallow breaths means you always feel like you’re panicking to some level?” The psychiatrist continued- rhetorical but my chronic Active Listening Face was already adamantly nodding as if I knew the answer… “I don’t know,” he said, “But everything about the body mechanisms of anyone with Cystic Fibrosis feels like anxiety in a purely physical sense, which has made it impossible to extrapolate the two in my experience.”

‘I’ have always been impossible to extrapolate from the two that made me who I hoped to be (my daughters) since the time I was the age of one.

I was told to not use words like “always” and “never”- therapeutically, psychologically- because hyperbole is like dumping cement on top of the psyche of whomever you’re trying to talk to all-at-once [cue The Airborne Toxic Event], instead of spreading the gravel out carefully over time.

(I a.l.w.a.y.s dump cement on myself.)

Not being believed almost single handedly ruined my life long ago, though I was able to rebuild, brick by brick, for the One and Two that also built me just by being (again, my daughters). Then, my life became filled with children and sisters that weren’t just genetic - a community that counted on me and counted in all the ways I discounted my value until it was a flickering Zero on the calculator, staring back.

It wasn’t the turns we did on stage that I loved, it turns out… it was taking care of friends and ducklings, and the feeling that loss couldn’t touch us because our stories lived on.

Other Shoes have dropped again and again… Suffering aches on… I am the chicken and I am the egg… I know that a new pain arising could mean month’s more loss of agency; More loss (an oxymoron in two words)… Loving IS impermanence… and I am:

Always and never okay right now.

But even when I can’t make it prettier…

I can make it better.

I am so grateful for you.

Thank you so much…. and please consider sharing to support this ongoing memoir, subscribing to make this commitment possible, or reaching out if you need a reader scholarship?

Just let me know, and it’s yours. There is no limit. I will always add anyone who would like to have full access because words- though they take work and thus supportive reader Word Nerds are the steam that keeps this shaky-engine going- are not something deserving of a price tag.

They have value… But we are all equally worthy. Always.

(Yes… aaaaaalways)