We, like so many of you, are sick and tired of our broken healthcare system in the United States of America. In this episode, Amy reads a piece expressing her despair over the state of it. We discuss how disempowering it can feel to be a patient in this system. And we consider how Luigi Mangione's 2024 shooting of United Healthcare CEO Brian Thompson reflects similar feelings of disempowerment and also a rising class consciousness in the United States. Finally, Lance SHOCKS Amy by quoting a sociologist to HER and we even manage to have a few laughs.

A PATIENT SANS PATIENCE

I'm sick and tired of being sick and tired

Sick and tired of medical forms and filings and faxes*

Sick and tired of bureaucracies and bureaucrats

Sick and tired of treating symptoms, never causes or cures

Sick and tired of pollyanna pundits and politicians

Sick and tired of systems and structures built by and for only the fortunate few

Sick and tired of the sick and tired system that got us here

Sick and tired of the sick and tired system that's keeping us here

Sick and tired of the sick and tired system that hasn't a clue or a care to get us out

*Does anyone else worry that an industry that's supposed to be cutting edge relies so heavily on faxes?

Originally posted at ⁠https://substack.com/@neverthelesspersisting/note/c-102724456⁠

CITED IN THIS EPISODE

1. Commonwealth Fund: ⁠https://apps.urban.org/features/wealth-inequality-charts/⁠
2. Thiele Strong, Megan. "Support for Luigi Mangione Reflects Working Class Weariness of Top-Down Violence," Common Dreams, December 28, 2024.
3. Turner, Bryan. 1992. Max Weber: From History to Modernity. New York: Routledge.
4. Urban Institute: ⁠https://apps.urban.org/features/wealth-inequality-charts/⁠

Welcome to Season 2 of NEVERTHELESS, PERSISTING! We're still here, we're still sick, we're still tired, and we've still got idiocracy to lament and solutions to share. In this episode, Amy shares her haiku, TIRED, and Amy and Lance discuss the never-ending quest to describe to not-sick people how it feels to be always-sick. We also talk about how people have always used stories, poetry, and other forms of creativity to help others understand experiences and conditions they themselves don't share.

TIRED

Fatigue surfaces

As helpless as to quicksand

The world carries on

Originally posted at https://substack.com/@neverthelesspersisting/note/c-91231028

EPISODE CITATIONS

https://mcpress.mayoclinic.org/living-well/what-those-with-chronic-conditions-wish-their-friends-knew/

https://press.uchicago.edu/ucp/books/book/chicago/W/bo14674212.html

Also,

• Anne Karen Bakken and colleagues apply Arthur Frank's model in their 2023 analysis of 14 ME/CFS patients' narratives of "recovery"

1. 1. "The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed."

   2. Bakken, Anne K., Anne M. Mengshoel, Oddgeir Synnes and Bolle S. Elin. 2023. "Acquiring a New Understanding of Illness and Agency: A Narrative Study of Recovering from Chronic Fatigue Syndrome." International Journal of Qualitative Studies on Health and Well-being 18(1). doi:⁠ https://doi.org/10.1080/17482631.2023.2223420⁠ .

• Colleen Donnelly applies Frank’s model in her 2024 article in the journal Disability & Society to make the argument that those who are unable to turn their chronic illness stories into RESTITUTION NARRATIVES are rendered mute.

1. 1. “There is a need to allow more venues for allowing stories about ongoing struggles that do not resolve rather than to silence these narratives because they don’t fit our learned, preferred tastes.”

   2. Donnelly, Colleen. 2024. “Claiming Chaos Narrative, Emerging from Silence.” Disability & Society 39(1):1–15. doi: 10.1080/09687599.2021.1983420.

Dr. Amy reads a piece from summer 2024 about her fight with an enema, Catholic hospital policies, shabby science, and JD Vance. The Forces of Evil were strong that summer and we've got shit to say about it! We've even got a few solutions to share which, as always, we expect will go ignored. Tune in, commiserate along, and perhaps the camaraderie will get us through. We can always hope.

AMY VS. FORCES OF EVIL

Let’s never do this week again.

For me, it started with a day trip to Beth Israel in Boston to get poked and prodded for my on-going participation in the NIH’s ⁠RECOVER-VITAL⁠ clinical trial. Go, science! The people at Beth Israel are just about as kind as can be so score one for humanity. But the trip is exhausting, expensive, and (in my case, at least), it turns out that while PAXLOVID might be well and good for acute COVID-19 symptoms, it does jack squat for long COVID symptoms unless you count inducing hypothyroidism and wreaking havoc on other blood test results as outcomes worth counting. And those only count if I actually took PAXLOVID which we don’t know because it’s a double-blind study.Score so far: Amy-0, Forces of Evil-1, Humanity-1. Life can suck it.

Phase two of the week began the next day when I found myself doubled over in pain on the floor of the shower, simultaneously pooping and puking (it’s a long story). Throw in an at-home enema for extra shits (pun intended) and giggles and we’ve got ourselves a party, people! I’ll spare you the photographic evidence.

Tally card: Amy-0, Forces of Evil-11, Humanity-1. Life can RAWT IN HELL, JAX.

Continuing further into phase two, we move from the shower floor to the emergency room where we’ve got a drunk guy in handcuffs screaming racist shit at the top of his lungs, a lady in a dress with no undies writhing on the floor (I’m telling you it wasn’t me and that’s my story and I’m sticking to it), a guy with an arm dangling from his motorcycle jacket in supernatural sorta way, and a kid bleeding from a real doozy on his knee remaining calmer than any of the so-called adults in the room.

Continues at ⁠https://amyblackstonephd.substack.com/p/amy-vs-forces-of-evil⁠