I have had one hell of a week, in terms of pain…
But, back!
And? Tons and tons of writing ahead (a silver lining, perhaps?)
I have to just keep gritting my teeth and doing the best I can, as spine medicine moves the slowest of the slow (and having your neck go out like mine has, halts life in oh so many ways).
I hope you like all the writing coming up though!
xo,
B
It’s strange how, when it comes to something like the science and synapses in our minds, we (I) can pretend it’s any less medical than the somatic blood and bones.
My brain is still my brain, right? Neuroscience IS still science; Healthcare.
But I harbor archaic offensive misnomers from my youth in 90s America that I can’t seem to shake. I know the judgements that have been said directly for mental health versus physical. I know how unsafe talking about how unsafe it feels to suffer this greatly can feel.
I’ve seen so many that I love accidentally hurt the world around them and be hurt by the world for not being able to talk about mental health; For having to defend, to downplay. Again and again and again I’ve seen this now.
But we reward silence and performance, even when it destroys families like a cancer inside out … and we ostracize oracular truths by means of helping.
Helping ourselves, helping those around us, helping those who needed someone else to help themselves enough to say it out loud so they could witness from afar and know they’re less alone.
I can’t really share what’s happened in my life and I likely never will.
I can archive memories and visuals for my mind as much as I want… but some pain is just too bad to say. The worst I’ve ever known. Meant for keeping trapped in some inner chamber of my heart.
Healthy? No. The only way I can see surviving? Currently yes. Thus far yes. Yes.
But that doesn’t make it any less f*cked up.
So I’m saying this here, this week, so I can feel like I’ve cleared my own earnest air.
I want to start sharing the true parts and parcels in this muted pastel mooring of what I need to one day remember.
This is my life’s quilt in quotation. Better, worse.
What happens when the Delphic squares thread together in a way you never thought could be? When your sense of identity, or morality, of belief… becomes a disconnected disbelief because: Why try when performing that you’re trying matters more sometimes than… honestly trying?
Whether or not you relate this to the success of the worldwide powers that be… or a past relationship or leap… or the “better to have loved and lost” adage not taking into account the feeling when a lost love feels long-game all along. Unreal, surreal. How? How do we go on?
I know we must. We do. We try. You, and I. (Hi)
But I also know that what see online feels like what life should be and not enough of us show up and wave and say: “I’m sort of lying”.
Rather, masking.
And sometimes we have to protect others but… damn if it doesn’t feel gross.
In a world that’s encouraging me to use AI to write my captions and Substack and onward, so that I can “make money” and be more efficient and not thumb with painful digits at all hours of the night.
I will never do that.
I would rather write imperfectly here but have it be true, than perform success and reduce pain with no intent.
This is my tell tale art, bleeding with faulty gore upon the page.
But at the end of the day, at least this ink really bleeds.
▪️▪️▪️▪️▪️
Tomorrow I’m going through a routine sedated procedure to be like Sherlock Holmes.
Actually, no. I prefer Nancy Drew.
Because we are looking for an ongoing annoying stomach pain that I’ll tell you about later. (Because it’s ongoing and annoying.)
I cannot describe how weird it is to have a procedure that sometimes leaves me sore and bleeding for (an otherwise very chill and easy) 24 hours or so… and not be racing off to work the next day. Rather, to dance the next day. And it’s making me realize two very harsh realities that I’m trying to meet internally - and here on “paper”- without judgement, which is how I typically approach myself.
First: I never let myself sit with how much I sacrificed and pushed through for dance (rather, for the people I loved to dance with)… and would again. No questions asked. I would.
I imagine most dancers and athletes and black-and-white style monoliths might be able to agree with this feel; Know what I’m talking about.
There is nothing more freeing than being “part of something” that both pushes and holds you. It’s why most of us can watch the new season of the Dallas Cowboy Cheerleader show and be like: “Why the hell do they put themselves through that? They are just another body in the pyramid. They aren’t even given a character with a name. They aren’t even given time, or support, or enough income or…”
And then, meanwhile, we hyperfocalized folks raise our hands slyly to the side of the triangle formation and whisper: “But… like, I kinda get it though.”
The second observation right now is that: I don’t know how to go through pain without a feeling of purpose. Even if the purpose was never perfect or the people can’t be perfect or on and on… pain thats just pain, and then nothing to rush off to after, feels worse.
Will it feel physically better? Yes. I’ll hurt for a day and I’ll “rest” for a day (ha. I don’t even believe that as I’m writing it, lol).
Would I rather hurt more but move back towards some sort of meaning? Yes. Always.
This week has been one of brutal-esque pain to be brutally honest. I’ll put-a-pencil-to-temple-connected-it-to-my-brain about it soon. But right now, it’s been a relief to “catch up” on nagging mosquitos of healthcare appointments that go along with the “chronic” continuation of acutely current responsibilities.
Monday: Labs. (Easy) Tuesday: Full day of driving to see my neurosurgeon’y team. Wednesday: Full day vibes CT scan because oral and IV contrast. Thursday: Longest day yet to see my CF specialty ENT for a chill hello. Friday: feeding tube procedure. If all goes to plan, I’ll write about that tomorrow to give more context because I sound unnecessarily dramatic because I’M IN A DRAMATIC MOOD…
And women can do whatever they want.
(So I wanna be dramatic today. Bye)
PART ONE.
More tomorrow!
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I’m sure I’ve said this before because I highly value all of your writing…but I think this is one of your most “important” posts. this is a really serious problem w medicine, an urgent issue that can definitely be life-threatening to people… … I have experienced this in medical settings
This is such a problem and our medical system is over burdened that dealing with mental heath is out of the question and if you are lucky enough to get a doctor that does care, especially for those with chronic illness because mental health and chronic illness go hand in hand for most that deal with it, getting to a therapist or physiatrist can take several months to even over a year. It is all so messed up!