Dear ones,
This week was a little one step forward, two steps back. We had gotten through P’s most severe pain and groggiest days during the first week after surgery. The second week, we saw notable progress in his pain levels and disposition, got good-ish news during the day of doctors’ visits, but then there was a sort of crash. His energy levels sank again, pain (from staple removal, probably) escalated, and my nervous system went from hyper-vigilant worst case scenario-ing to just, like, rubble after the storm. This meant another full week that felt like a crawl, still hard to focus and get back to our normal routines; understandable, of course, but hard to manage when routines are what help both of us maintain decent mental health. Our task now is to be forgiving of ourselves and our inability to operate at full capacity.
I’ve been thinking a lot about how the only reason we have the spaciousness to fall apart a little is because we’ve gotten support in navigating the hell that is the US healthcare system, and because of our unique relationships to work and money. This deserves a longer essay than I’m offering here, but it feels important to name that there are only a few ways that it’s possible to afford being sick in this country: 1) have a salaried position with healthcare and paid time off; 2) exist at or below the poverty line and already be on or know how to apply for Medicaid (likely getting denied several times, because state bureaucracy is Rules red tape: as one therapist warned me when I was helping my mom get on disability, “they will reject you three times before saying yes.”); 3) be weird artist/SW/writer/activist types who can make decent chunks of money in short periods of time and/or also be okay being poor for a bit. (Oh, also, you need to be childless for this one to work.)
The truth of our situation is that P was in Spain with free healthcare, moved here and got a part time job, hadn’t dealt with the marketplace insurance hell before the tumor diagnosis, lost his job (since it was driving a compost truck and he’s not allowed to drive for six months after having a seizure), and was basically fucked if it were not for the incredible help we got from two healthcare-savvy feminist comrades who got him on financial aid and explained how to best approach the nightmare of paperwork. Also, I’m covering our bills which I’m only able to do because I had two speaking gigs, this modest newsletter income, and about nine hours of client work. July will look very different (no speaking gigs, for example), so we’ll have to figure out some other way to compensate while also making sure I have time to drive him to daily radiation appointments. What an awesome, low-stress, caring place to be while managing cancer treatment!
There is tons written on the horror of illness and capitalism, and since this is a shorter note today, I’ll just offer some here and encourage you to read more: this explains how people on disability can’t get married if they want to keep their benefits; pregnancy and birth, even if you have employer insurance, can still put you in hospital bill debt; one third of GoFundMe campaigns are for health related costs; this recent piece on a new wave of gig-ifying formerly salaried positions (which means more workers with no benefits); how cancer patients lose Medicaid; many have to ration lifesaving insulin; gender affirming care may or may not be covered by insurance, and more recently politicians are trying to criminalize it. I’m guessing none of this is surprising or news to anyone who reads this newsletter, but the specific examples I linked to are illustrative of these bureaucratic technicalities, obscene income caps, and the obfuscation of processes many of us need to stay alive.
I do trust we will be okay. I have secured teaching in the fall (a huge relief!), and people basically insisted P start a GoFundMe for his lost income (which we finally did, and also included other people with health crises as recipients). But it’s been a very sobering confrontation with the realities of the medical industrial complex — all things I knew before dealing with this, but it sure hits different when you’re in the midst of it.
Anyway, to end on a brighter note: I’m grateful for the skills of punk and artist life (and for him, squatter life) to help us endure economic instability, but I’m gonna keep fighting for a world where the quality of our health is not contingent on the size or stability of our bank accounts.
love & solidarity,
raechel
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