“I wanna make stuff!” said Inner Child indignantly.
I got down to her level. “I mean…you can make stuff if you want. Not right now because we’re resting – but if that’s something you want to do, I will make sure you get a chance to make stuff.”
“But whe-e-en?” sobbed Inner Child, wiping her eyes with tiny fists.
“I know you don’t like to wait,” I said. I put a hand on her shoulder as she shook with sobs. Her nose was running. Tears stained her smock.
My posture softened and I invited her in for a bear hug, allowing the river of snot and tears to gush into my breast. She shook a few more times, shoulders quivering.
Sometimes I have trouble understanding that I am sick.
I suppose my articulateness doesn’t help, nor my writing ability, which is weirdly intact. Others are often incredulous about how disabled I actually am. But so am I.
What is even more unhelpful is a lack of documentation. Despite complaining of varying degrees of brain fog or inattention since maybe 2015, I’ve never had basic neuropsychological testing to confirm or classify this. I may pursue this soon.
It’s to the point that most of the time I lack the endurance to fill out a basic form, read a short article, watch a television show with full attention – and particularly, to do any of those things repetitively.
There’s also the thing I call inertia. That’s where the day just kind of…slips by me. I had days in college where I would wake up and spend hours on the couch scrolling through Facebook, playing freemium games, maybe having a snack – but not really quite remembering to do things like make breakfast, brush my teeth, take a shower.
I didn’t feel depressed. I felt pathologically content. I didn’t know why my brain had forgotten how to care. I was sated by mindless YouTube content and snacks, and would often be baffled when I failed all my college courses.
Perhaps there is a signal that our brain gives us – like hunger or thirst – to sense the effort it would take to complete something. If there is, at some point mine just…broke. It’s beyond ADHD, though there are similarities.
Even as my days slip away and my brain screams for oxygen, I will regularly try to initiate some project – maybe improving my website’s SEO, learning financial literacy, researching treatments for my condition – and then be somehow surprised when I can’t remember to follow even the basic initial steps for a day or two, let alone see a project through to completion.
Surprised despite that on many days I can’t even watch a silly Jubilee Media video with full attention. Surprised despite that in 2020 the approximate amount of “tasks” I could initiate in one day was three, where a “task” was defined as writing a single brief email or making a short phone call to schedule an appointment. Surprised despite that in order to watch a film I often have to break it into chunks – watch 12 minutes one day, 10 minutes the next, 15 minutes the next day…hey, wait, is there a film I was in the middle of? Look at that bird!
But I wonder what one is to do? How do you teach the brain that it is sick? How do you unteach desire?
I won’t soon stop longing, but I will find my way.
I rather think it’s predictable where we’ve ended up.
If we won’t listen to warnings –
no, that will warm the planet!
no, that will result in workplace accidents!
no, that will poison a community with biotoxins!
no, you have to put up a sign so people don’t swim with piranhas!
no, brominated vegetable oil is not fit for human consumption!
no, you can’t detain people indefinitely on pretrial charges; then you’ll have a debtor’s prison!
no, we cannot rip kids from their families and keep them in a shithole at the border!
no, you can’t just drain the state and municipal coffers when we have ghettos with no plan for revitalization!
no, you can’t just throw plastic into the oceans ad infinitum!
no, you do have to warn the public of a deadly pandemic on the horizon and protect people and their welfare, rather than doing insider trading to profit from their suffering!
no, you can’t allow price gouging of a fucking Epi pen!
Where exactly the living fuck do we expect to be right now, then, America?
I feel we’ve sorely lost our way. But I also feel out of the loop, as my chronic illness has kept me in a state akin to semi-consciousness. Maybe when I fully wake up, I’ll find some sense has been knocked into some folks. Or even – shudder – some empathy.
Hey everyone. My name is Nora. I’m 27 years old. I overcame insurmountable odds to be here. I have come face to face with a deep, ineffable suffering that is the birthright of every human, as horrible as anything, as old as consciousness, as typical as the sky at night. But I don’t really want to talk about that. Please do not bring it up in front of me. Hey, what’s for dinner?
A number of us who live with complex, poorly understood chronic illness feel marked in some way by the experience. There’s a shared language among us; a common understanding that there are these people who get it and to whom it doesn’t have to be explained. But the chasm between us and the unmarked is so vast, sometimes it doesn’t feel it’s worth translating to non-natives anyway.
“It” came back in the past month. That cruelty that I had hoped was left far behind me in 2018, but I had hoped this with a thin wispy hope standing on a frayed feather. I’d no idea what had really caused the suffering that I shorten to “2018” or “it,” and simply could not devote very much of myself to wondering. If the answer wasn’t in my face, it likely would pull me from the joys I could experience in the present.
Humbled doesn’t start to cover this existence. I have been learning a bit about boundaries. I’ve wondered why I choose to remain in a life that frequently violates my boundaries.
I suppose for right now, the answer is “Just in case.”
