Not Things Like: “Airways Become Colonized With Bacteria”
I was supposed to have a sedated procedure yesterday.
My friend was supposed to take me which would have involved driving like 45 minutes to get me, then drive 2 hours or so to my CF hospital, and then back to my house, and then back to hers. Supposed to supposed to.
“Sometimes I forget that I can get sick and it just compounds,” I said this morning (to my cat), after realizing that the sick from a few weeks ago definitely didn’t go away with the antibiotics I feared definitely wouldn’t make it go away because my body loves the ‘ococcus, and went to my ear for like a week, and then yesterday: face.
I’ve had my share of sinus surgeries and don’t have the time for more than Bactrim, nor do I want to be reminded how one little bug can become a bedlam. “I have a show’ this weekend,” I say to my doctor “Am I supposed to OTC all weekend and then….. ?”
WHAT AM I SUPPOSED TO DO is what we scream into the abyss and the answer is always: “do”.
Why do I still expect deliverance? I want someone to say, “Take this pill and you’ll feel better”…. And then, on the other side- as if in those survival movies where the character finally surmounts the peek and the fog clears and we realize, if they just walk a little further, there’s a tiny town or a small cabin with smoke swiveling above it and we can finally see it and THERE IT IS- the tasks will stop.
I cancelled the procedure as it’s another risk that seems ridiculous right now. I worry about being ethical with other people I don’t want to get sick but know this is a colonization. This isn’t the seed any more; these are the roots.
I could quote every online-agitprop; disassociated from the actual words I want to define my day. I want to define it as rewatching the first season of The OA and imagining a stage show inspired by. Or the essays of Nina Riggs I’m rereading. Not things like: “Airways become colonized with bacteria”.
I don’t write to teach. I’m not even my own teacher. ‘To thine own’ Hamletic knowing not withstanding, I can’t seem to withstand the only thing I actually know:
Every symptom creates another supposed to… not actual rest.
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I just talked to Jenn (battling2breathe) about this. We both agree that slowing down and resting has it's place, but so does doing and pushing yourself in a smart way. All of us with serious chronic illnesses know our lives are eventually going to be cut shorter than the average person's. So we have to ask ourselves what do we want quantity, or quality? I think you agree with my and Jenn's conclusion that we'd all prefer quality time in life rather than quantity of years in life. We want memories, friends, experiences, creativity, love, family, a legacy, and most of all no regrets when our time comes. So make those memories, leave a legacy, never leave conversations unfinished, love big and hard there'll be time for rest later. Also you not writing to teach is nonsense. You are an excellent teacher, and have imparted much wisdom and solace on others. Don't judge yourself by being a bad teacher to yourself. I've told you this before we are our own worst enemies when it comes to self teaching, and self belief so that is not a good bar to judge yourself by. The impact you make on others (which is huge with you) is the bar you should be paying attention too. You are an excellent teacher even if you can't make yourself believe it.