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

This is your brain on Long COVID. This week, we attempt the impossible: to describe brain fog while experiencing brain fog. We also share what's worked for us to fight it and Amy gets on her sociological soapbox for a moment and gives a mini lesson on the concept of ANOMIE.

IT'S A LOT LIKE LIFE

Fog creeps in, seeps in slowly. It’s a tricky fucker. Slipping into the tiniest of crevices, spaces I didn’t know were there. My mind slows to a crawl. Words slip away, just out of reach.

Mental tasks that were once so easy are impossible now. Thoughts trapped in a dense, damp mess that I can’t see through or push away. I can resist but eventually I have no choice but to live with it. Live in it.

It's unclear exactly when the fog took over – I'm the frog on slow boil – but eventually I can’t deny that it has. The clarity I once had is gone. This is life with Long COVID. No more Life 1.0 … Life 2.0 has begun. Life-adjacent. Life-like. Life-ish. Life sorta kinda.

I’m reminded of a song I had on repeat during my teen years; Depeche Mode’s “Master and Servant.” The lyric goes “You treat me like a dog, get me down on my knees.” I’m the dog, down on my knees.

I’m the servant and the fog is my master. On rare days I’m allowed out. But always, the servant heeds its master. Afterall, “Domination's the name of the game.” Playtime always ends, and when it does, it’s back to the fog and the certainty that this is my life now.

Posted at https://amyblackstonephd.substack.com/p/its-a-lot-like-life

In this episode, we reflect on our 30 year marriage, lessons learned and, perhaps more importantly, lessons unlearned over the years. Topics range from the Grim Reaper and date nights to Dr. Phil and sticking together behind enemy lines.

LIVE~LAUGH~LONG COVID

Lance and I celebrated 30 years of marriage recently. And by celebrated I mean it went something like this. And by “something like this” I mean it went exactly like this…

Amy "What day is it!? Is it our anniversary!?!"

Lance " ... " (Thinking ...)

Lance " ... " (Looks at phone ...)

Lance "Not yet."

Later that night, I got a text from Lance, “Dinner at Novio’s tomorrow at 5.” We were gonna celebrate!

Thus marked our 30th rotation around the sun as a legally married couple. Perfectly befitting a perfectly brain foggy pair, if you ask me.

Continues at ⁠https://amyblackstonephd.substack.com/p/livelaughlong-covid

Short episode coming at you this week. Amy's checking in solo while we adjust to a new time zone and settle in to our summer digs in Italy! She's got a few reflections to share about one of her favorite places on earth, how she navigates it with health challenges, and a new health update. Listen in and we'll both be back next week!

I REMEMBER

I almost thought I'd forgotten what life was like in the Before Times. Then someone asked what life looks like for me these days. And then I remembered what I forgot.

Skiing. Parties. Travel. Late night meals. Driving. Diving. A whole day without naps. Big screen TV. Live music. Italy. Italy. Italy.

You can keep it all but please let me have Italy. I remember Italy but I'm afraid I'll forget. The carrots. Just carrots but perfectly carrots. The pear. Just a pear but perfection. The church bells. Wholly unnecessary but fine, I'll forgive those because PROSCIUTTO.

And grapes. The vines. The valleys. The views. THE WINE.

I remember these things. I remember Italy. I'm keeping Italy.

-----------------As promised, here's a link to Amy's Instagram if you want to check out the views from our villa: https://www.instagram.com/a.maria.blackstone/

And in case you want to stay at this incredible place too, which we highly recommend... https://www.airbnb.com/rooms/36460651?source_impression_id=p3_1751033391_P3h_GQcZWmQfMzTM

B-I-N-G-O! What good is a chronic illness if we can't have a little fun with it? Today we're playing Long COVID Bingo! Instead of numbers on the squares of our cards, we've got the questions, comments, and bits of "wisdom" most commonly shared with Long COVID patients. There are classics like, "What's Long COVID?" and, "Are you still sick?" And of course everyone's favorite, "You look perfectly fine!" and the ever-popular, "Sorry. That treatment isn't covered by your insurance." Play along! Let's have some fun!

Follow along and get your own LONG COVID BINGO card at ⁠https://amyblackstonephd.substack.com/p/long-covid-bingo⁠

Have you ever struggled to admit you need help? Do you ever resist the very thing you know you need? Have you ever felt the simultaneous push-pull of gratitude AND resentment? Given your druthers, would you choose the role of care-R over care-E? If you answered yes to any of these questions, this episode is for you! If you didn't, listen for insight into how the other half of us think!

ACCEPTING YOUR CARE*

The carnivorous plants in our house landed there against their will. Or not so much against their will as un-consulted. They're there whether they like it or not.

But they can thrive. And thrive they do. On one condition:

They must accept your care.

You check them daily. You are incessant about tending to their needs.

I wonder, do they ever resent you for it? Do they ever resist the very thing they need in order to survive?

What if one day they just said "no thanks" to the specialty water you faithfully order, pay for, and lug up four flights of stairs for them?

Well, we know "what if."

So they accept your care. And you give it. Willing. Lovingly. Daily. Typically even gladly.

And you will continue giving it.

And they will continue to accept it.

And they will thrive here, with you.

*After Max Ritvo's "Your Voice in the Chemo Room"

Continues at ⁠https://substack.com/@neverthelesspersisting/note/c-114664731?utm_source=activity_item