Nevertheless, Persisting: Life. Love. Long COVID.

Boston Karen

Wed, 08 Apr 2026 09:08:00 GMT

Did you know it’s possible to exit a two-night hospital stay mostly unscathed? Neither did we! Not until Boston Karen came along, that is. Amy reflects on a rare positive health care experience and we wonder at the difference a single provider can make. We dig into the concept of structural medical gaslighting and discuss how much agency individual providers have in their own and their patients’ experiences. We also share a bunch of ways we can begin to dismantle the existing medical industrial complex wherein structural medical gaslighting thrives. Importantly, we give a long-overdue shoutout all the Karen/Karins we’ve loved before and acknowledge #notalkarens (after some brief confusion over whether we mean #NotAllKarens or #NoTallKarens).

BOSTON KAREN

I shiver under the covers, shrinking from the natural light worming its way across my bed. A cuddle from Boston Karen is exactly what I need right now.

She knows. She's magic. A healer.

Boston Karen pokes her head under the covers. What must she be thinking about the grown woman before her, teeth chattering, body shaking, cowering from the light, tears streaming down her face? What trauma could have evoked this response?

A warm shower. The most banal of events. In a handicap-accessible, hospital-clean shower, no less.

Continues at https://amyblackstonephd.substack.com/p/boston-karen

CITED IN THIS EPISODE

Brauer Lara, Werner de Cruppé, and Max Geraedts. 2025. “‘Take me seriously’: A qualitative interview study exploring healthcare experiences of endometriosis patients.” PLoS One 20(5): e0323883. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0323883
Berenstain, Nora. 2019. “White Feminist Gaslighting,” Hypatia 35: 733-758.

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Parasocial Relationships

Wed, 18 Mar 2026 06:27:58 GMT

Amy confesses to having imaginary relationships with a whole bunch of people and we consider whether she is totally nuts or simply engaged in a bunch of parasocial relationships (or possibly both?). We go on to discuss the benefits of parasocial relationships for people with chronic illnesses, potential drawbacks for all parties involved, and what lessons social science has for us on the topic.

PARASOCIAL RELATIONSHIPS

Dear Deb,

I met you once in Nashville after a show and though my brain is foggy these days, it’s a moment I’ll cherish forever.

Years later, you gave me the gift of visiting my home state of Maine and - even better - presented a show that allowed a person like me (light sensitivity, noise sensitivity, all the dumb sensitivities) to stay for the whole thing and share my very favorite artist with my parents who’d come to tow to help with my caretaking.

Continues at https://amyblackstonephd.substack.com/p/dedication

CITED IN THIS EPISODE:

Horton, Donald, and R. Richard Wohl. 1956. “Mass Communication and Para-Social Interaction: Observations on Intimacy at a Distance.” Psychiatry 19 (3): 215–29.
Liebers, Nicole, and Holger Schramm. 2019. "Parasocial Interactions and Relationships with Media Characters–An Inventory of 60 Years of Research." Communication Research Trends 38(2):4-31
Struck-Peregończyk, Monika, and Iwona Leonowicz-Bukala. 2023. "Changing the Narrative: Self-Representations of Disabled People in Social Media." Przeglad Socjologii Jakosciowej 19(3):62-79.
Schiappa Edward, Gregg Peter B., Hewes Dean E. (2005), The Parasocial Contact Hypothesis, “Communication Monographs”,vol. 72(1), pp. 92–115, https://doi.org/10.1080/0363775052000342544

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

To Minneapolis, With Love

Mon, 16 Feb 2026 23:01:09 GMT

As former residents and forever fans of Minneapolis, we’re outraged and heartbroken by the occupation, kidnapping, and murder of residents that our government is shamelessly unleashing on the people who live there today. Everything is very much NOT alright. But Minnesotans are hardy - and hearty - folk and we love them and the state we moved from those 20+ years ago, deeply. In this episode, Amy shares an essay she wrote recently about the occupation in Minnesota and what the occupiers don’t understand about the people they so foolishly thought they could intimidate. We go on to reflect on our years in Minneapolis and the various ways that social trust has been the key to building the strong community ties that took ICE by storm.

TO MINNEAPOLIS, WITH LOVE

Normally, the chill in Minneapolis melts easily - all it takes is a smile, a nod, a simple kindness - but there’s a new kind of ICE in town, the likes of which Minnesotans have never seen and, before they can melt it, it is quite literally killing them. Watching as the city that ushered me into adulthood is occupied and its people are kidnapped and murdered by our very own government is the sort of apocalyptic cognitive dissonance that was most definitely not on my Bingo card this year. Or ever.

Continues at ⁠⁠https://amyblackstonephd.substack.com/p/to-minneapolis-with-love

CITED IN THIS EPISODE:

Howley, Kerry. January 23, 2026. “Your Friendly Neighborhood Resistance.” New York Magazine. https://nymag.com/intelligencer/article/minneapolis-vs-donald-trump-ice-invasion.html
Strand, Palma J.,J.D.L.L.M., and Malka R. Kopell M.P.P. 2025. "A "Civity" Approach Helps Build the Civic Muscle that Underlies Healthy Communities." American Journal of Public Health 115(4):506-510 https://libraries.maine.edu/auth/EZproxy/test/authej.asp?url=https://www.proquest.com/scholarly-journals/civity-approach-helps-build-civic-muscle-that/docview/3188476442/se-2.
As promised in the episode, note that the state with the HIGHEST levels of social trust in the nation, even higher than Minnesota, is (drum roll, please).... UTAH!

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Rebuilding Our Village

Wed, 19 Nov 2025 08:29:00 GMT

What do you do when the community you spent years crafting falls apart? As we pick up the pieces wrought by the war that has been our experience with the pandemic, Long COVID, and our community's response to both, we assess where and how things went wrong and how we might begin rebuild. Good thing Amy's done lots of research on these topics - and that there's a whole new generation doing things differently that we can learn from!

REBUILDING OUR VILLAGE

When I interviewed childfree adults for my book, I learned that many nonparents form intentional communities around which they build their lives. Lance and I are no different. We settled in Bangor, Maine intending to stay here as we age. Eventually, we presumed, we’d die here.

Over the years, our local network grew thanks to considered, intentional effort. We put real blood, sweat, tears, love, and resources into this wickedly wacky, absolutely lovable little city these past couple of decades. As a result, we’ve moved past the daily reminders that we are “from away” to feeling fully embraced. Never have I loved a place more deeply. Never have I felt more HOME.

Continues at https://amyblackstonephd.substack.com/p/rebuilding-our-village

CITED IN THIS EPISODE

Blackstone, Amy. Childfree by Choice: The Movement Redefining Family and Creating a New Age of Independence. New York: Dutton.
Gardner, Susan K. and Amy Blackstone. 2015, 2023. “Confronting Faculty Incivility and Mobbing,” in Disrupting the Culture of Silence: Confronting Gender Inequality and Making Change in Higher Education, edited by Kris De Welde and Andi Stepnick. New York: Routledge.
Johns Hopkins University: Gen Z In The Workplace
Stanford University: 8 ways Gen Z will change the workforce
West, Kath. 1991, 1997. Families We Choose: Lesbians, Gays, Kinship. New York: Columbia University Press.
Amy's 2019 NYT OpEd: Grow Old Like the Golden Girls

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

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The Bucket Formerly Known as Silver Linings

Wed, 29 Oct 2025 16:13:27 GMT

Forget about silver linings; midnight blue is where it's at. This week, Amy confronts her old habit of grasping for silver linings and considers a different, more nuanced approach (and color) along with lessons learned from life in a chronically ill body. Together, Lance and Amy discuss how they think about silver linings and how they find meaning when things seem to happen for no reason at all.

THE BUCKET FORMERLY KNOWN AS SILVER LININGS

“This sort of thing is old hat for me and I'm a huge silver linings person. I'm really just looking for help coping with my current condition and celebrating what I'm learning from it.”

And so began the latest in my decades-long series of relationships where I bare all of my most humiliating truths, the ugliest bits that make it hard for even me to face myself after revealing them. I have sometimes revealed these truths within mere minutes of first meeting said compadre and they STILL look me in the eye after I’ve divulged the unsightliness within me. They look with compassion even.

I'm talking about THERAPY. Said compadre is my THERAPIST. There, I said it.

Continues at https://amyblackstonephd.substack.com/p/the-bucket-formerly-known-as-silver

CITED IN THIS EPISODE

Marishelle Lieberwerth and Alistair Niemeijer. “Lost and changed meaning in life of people with Long Covid: a qualitative study.” 2024. INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING VOL. 19, 2289668 https://doi.org/10.1080/17482631.2023.2289668
Anna M. Carapellotti, Hannie (J.E.M.) Meijerink, Christine Gravemaker-Scott, Lucia Thielman, Renée Kool, Natalie Lewin, and Tineke A. Abma. 2023. “Escape, expand, embrace: the transformational lived experience of rediscovering the self and the other while dancing with Parkinson’s or Multiple Sclerosis.” INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING VOL. 18, 2143611 https://doi.org/10.1080/17482631.2022.2143611

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Healing with the Housewives

Wed, 08 Oct 2025 08:01:00 GMT

Amy is delivering a special form of torture to Lance this week and we're discussing all things Bravo. Bravo, Bravo, f'ing Bravo! Amy shares how the 'wives have helped her cope with the challenges of chronic illness and we consider the impact and possibilities of reality TV more broadly - all while enjoying some pink bubbly, in honor of the real housewives, of course.

HEALING WITH THE HOUSEWIVES

My name is Amy. I am a sociologist and I have a Ph.D. and I like to think I’m reasonably smart and I believe that wealth is distributed in ALL the wrong ways in my home country of the U.S. of A. I am a raging feminist and damn proud of it. I believe the propagation of MAGA beliefs is mostly the result of widespread inequality, abuse of power, corporate monopolization, and crippling fear.

And. Wait for it. I love Bravo. The network where wealth is flaunted in all the dumbest ways. The network whose roster of stars includes dingdongs who will charter four private planes to Puerto Rico to deliver $50 gift cards to the people, as long as they can catch it on camera. This IS a crisis, after all...

Continues at https://amyblackstonephd.substack.com/p/8c9f81f1-0049-449c-a10e-0a1a16e3d0b2

CITED IN THIS EPISODE

Branco, Susan F. 2025. "Teaching while Streaming: Adult Adoptee Themes in the Real Housewives Reality Series." Family Journal 33(2):244-247. doi: Teaching While Streaming: Adult Adoptee Themes in The Real Housewives Reality Series - Susan F. Branco, 2025 .

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

A Patient Sans Patience

Wed, 24 Sep 2025 08:12:00 GMT

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

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

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Tired

Wed, 10 Sep 2025 08:01:00 GMT

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"

"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."
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.

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Amy vs. Forces of Evil

Fri, 25 Jul 2025 15:35:19 GMT

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

It's a Lot Like Life

Fri, 18 Jul 2025 05:04:00 GMT

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Live~Laugh~Long COVID

Fri, 04 Jul 2025 06:00:00 GMT

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

I Remember

Fri, 27 Jun 2025 13:42:25 GMT

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/

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

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Long COVID Bingo

Fri, 20 Jun 2025 06:44:00 GMT

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Accepting Your Care

Fri, 13 Jun 2025 08:27:00 GMT

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

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

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The More Colors That You Eat, Part 2

Fri, 06 Jun 2025 07:26:00 GMT

Here's Part 2 of our ALL ABOUT FOOD episode (a.k.a., The More Colors That You Eat). This week, we hear about Lance's relationship with food as related to too much, not enough, intolerances, moderation, illness, wellness, and philosophy. Not necessarily in that order. And we revisit the semaglutide question.

THE MORE COLORS THAT YOU EAT

... In the After Times, since I’ve been sick, I have thought about food more than I’d previously imagined possible. I have tinkered with my diet in all of the doctor-recommended, nutritionist-recommended, thin-person-recommended, expert-looking-person-recommended ways possible. I have targeted all of the bad guys - sugar, gluten, alcohol, processed foods, saturated fats, trans fats, my own fat.

Guess what?

I’M STILL SICK!

In 2023, I heard a talk by a doctor who has been deep in the COVID research trenches from the beginning, a doctor I respect deeply (as do many others, including his peers). This doctor presented early findings and hypotheses from his research on Long COVID.

Among those hypotheses was the idea that fat tissue might contribute not only to the ceaseless mental torture of women raised in modern-day Western cultures (my addition to the hypothesis), it may actually serve as a cozy little resting place for the SARS-CoV-2 virus.

Continues at ⁠⁠https://amyblackstonephd.substack.com/p/the-more-colors-that-you-eat⁠

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

The More Colors That You Eat, Part 1

Sat, 31 May 2025 19:48:28 GMT

It's all about food! And Long COVID and semaglutide and food agony and fat and fatigue and health and all the cultural beliefs and myths and other crap that's wrapped up in all that. It's such a whopper of a topic that we had to break it up into two. This week, Amy opens up about her lifelong tumultuous relationship with food, the lengths she's gone to to "fix" herself through food, and her various (and generally failed) attempts to "cure" her Long COVID through food and food-related drugs.

THE MORE COLORS THAT YOU EAT

More fiber. More fruits. More protein. More probiotics. More veggies. More variety. More water. More supplements. More whole grains. More fish. More lean meat. More exercise. More sleep. Track everything.

Fewer calories. Less sugar. Less alcohol. Less white flour. Fewer fried foods. Fewer preservatives. Fewer processed foods. Less fatty meat. Less exercise. Less sleep. Don't be so obsessed.

Love food. Proceed with caution. Love food. Be very afraid. Food heals. Food kills. Just shut up about it and eat. Just shut up about it and stop eating so much.

Can't you see? It's easy, dummy!

Continues at https://amyblackstonephd.substack.com/p/the-more-colors-that-you-eat

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Keepin' It Real with Krueger

Fri, 16 May 2025 04:52:00 GMT

In this episode, we discuss the power of taking back control when it feels like you have none. And in true Dr. Amy fashion, she's taking control in the most contrary of fashions by employing the most horrifying of allies, one Mr. Freddy Krueger. Dr. Amy describes how she has harnessed Freddy's powers to give hell to her tormenters so she can stay focused on her mission of spreading kindness, staying true to her values, and generally trying not to be an asshole (or a dingleberry). Lance shares some brilliant insights and enjoys a cocktail. A good time was had by all. Join us!

KEEPIN' IT REAL WITH KRUEGER

I was 12 years old when the first Nightmare on Elm Street movie came out. In 7th grade; my first year at John Adams Junior High School. My friend J and I quickly became obsessed with all things Freddy Krueger. A monster designed to evoke fear but, for us, he held the intrigue of the forbidden fruit. The movie did, too. It was violent, full of gratuitous (and, on reflection, extraordinarily stupid) sexualized imagery of young women in their nighties, and even had a few f-bombs scattered throughout.

We couldn’t get enough!

Freddy has remained one of the more stable men in my life. He can always be counted on to show up, whether you need/want him to or not. He’s predictable. You know what you’re gonna get with Freddy. There’s no pretense. No pretending. We all know what he’s here for. It’s cool. Do your thing, Freddy. He can’t be blamed if you think about it. As I like to say, he comes by it honestly.

Continues at https://amyblackstonephd.substack.com/p/keepin-it-real-with-krueger

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

5 years and trillions of dollars later, we’re still unaware of the full extent of COVID

Fri, 09 May 2025 05:08:00 GMT

Ever wonder how the sausage gets made? In this episode, Dr. Amy and Lance take you backstage and discuss Maine bill LD1688, An Act to Encourage Continuing Education Relating to Certain Infection-Associated Chronic Conditions for Physicians and Nurses. It's like your own modern-day Schoolhouse Rock! Dr. Amy reads her Bangor Daily News Op-Ed wherein she introduces the bill and we share our recent experience testifying in favor of it. We also share why we think it's so important for providers to become better educated about these conditions, why (we think) they are against this effort (even though we think they should be in favor of it), and what roles patients can play in this effort.

5 YEARS AND TRILLIONS OF DOLLARS LATER, WE'RE STILL UNAWARE OF THE FULL EXTENT OF COVID

If you knew there was an illness costing the global economy $1 trillion per year, would you want to combat it? What if you learned this illness cost the U.S. economy $3.7 trillion over the past five years? Would it make a difference to know that an estimated 400 million people are affected globally or that one-quarter of U.S. Marines are now experiencing long-term decreases in functional performance because of this illness, or that more than 272,000 Mainers are impacted?

The illness I’m describing is Long COVID, a chronic condition lasting months to years following an initial period of COVID-19 infection. Continues at https://www.bangordailynews.com/2025/03/18/opinion/opinion-contributor/were-still-unaware-of-the-full-extent-of-covid-joam40zk0w/.

The bill we discuss: Maine's LD1688, An Act to Encourage Continuing Education Relating to Certain Infection-Associated Chronic Conditions for Physicians and Nurses

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Report From the Field: How my effort to spread kindness and give fewer you-know-whats is going amidst the American war for democracy and our collective fight for basic human decency

Fri, 02 May 2025 14:26:22 GMT

Lance is back, baby!!! Oh, how we've missed him! This week, Dr. Amy offers her first report from the field in her effort to spread kindness and give fewer f*cks in this, the year of our Lord Saint Dolly Parton 2025 (I guess the year of our Lord Saint Dolly Parton is technically 79 since she was born that many years ago but whatever). This may sound like a simple enough task - Be kind! Let them! (To borrow a phrase from Mel Robbins, who borrowed - ahem stole - a phrase from Cassie Phillips). But throw in a chronic illness (an invisible one, no less), a crappy medical system, and a whole bunch of institutions and individuals who don't get it and, well, YOU get it.

REPORT FROM THE FIELD

A month or so ago I pronounced this my year of spreading kindness and giving fewer f*cks. Look! Here I am, basking in the glow of all that dimwitted naivety!

kindness and giving fewer f*cks. Can these two seemingly disparate goals be accomplished simultaneously? Stay tuned!"

Had I understood the enormity of this challenge, I may not have set such a lofty goal. Then again, tell me something is going to be tough, or even better - terrifying and possibly even impossible - and I'm first in line to prove you wrong.

In said pronouncement, I inferred with my “stay tuned” ending that I would keep y'all posted as I go about this mission. Thus, as promised, here's a report from each of a variety of social institutions/bureaucracies I've had the pleasure of interacting with in the past few weeks.

Continues at https://amyblackstonephd.substack.com/p/report-from-the-field

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

I (still) Love You. I'm (still) Sorry. (and a very important a bonus message)

Fri, 25 Apr 2025 15:16:02 GMT

You know that thing in our outro where we say we drop a new episode every Friday, Long COVID willing? Well this week, Long COVID just isn't willing so instead we have a new-ISH episode for you! There's a very important message at the beginning wherein Dr. Amy introduces Maine bill LD1688 - the thing keeping us from dropping said brand spankin' new episode this week AND a bill that we hope will soon become law! Why? Because it would require Maine's medical licensing organizations to encourage providers to seek out Continuing Medical Education focused on Infection-Associated Chronic Conditions like Long COVID (and many others). Check out info on the bill at the links below.

Also this week, a higher quality version of one of our earliest - and currently least listened to (we suspect due to earlier poor audio quality) - episodes! Please listen. It's one of Amy's favorites because she wants everyone who cares about anyone with a chronic illness to hear it. There's always so much we want to share and do and say and so little capacity to do it. Here, she tries to explain.

This is also a very special episode because Dr. Amy's work with her students is and will always be one of the greatest joys and privileges of her life. As the current semester comes to an end, she's feeling especially gushy - and grateful - about that part of her journey. If you are or have been a student or mentee of mine - I love you. I thank you.

Dr. Amy reads "I Love You. I'm Sorry." from her Substack then she and Lance discuss how chronic illness can make you feel like you're letting everybody in your life down, maintaining relationships when you're too sick to move, and making peace with it all.

I LOVE YOU. I'M SORRY.

If I could implant an electronic ticker tape across my forehead, these are the words I’d string across that broad expanse. I should also add them to my email and text headers and footers. And perhaps to a billboard outside my house. You see, as a chronic illness-having person, I’ve learned that time with my peeps is so very precious. I wish I could express to each and every one of you just how much I love you and how very sorry I am that I haven’t been and can’t be more present.

Continues at ⁠⁠⁠https://amyblackstonephd.substack.com/p/i-love-you-im-sorry⁠⁠.

ABOUT MAINE BILL LD1688: An Act to Encourage Continuing Education Relating to Certain Infection-associated Chronic Conditions for Physicians and Nurses

Text of the bill

Hearing information

Info on how/when/where to testify

Patient-Led Research Collaborative statement of support

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

What Would Dolly Do?

Fri, 18 Apr 2025 04:22:38 GMT

When Lance is away, Dr. Amy has pal's night! This is a special episode for many reasons. First, we have our first-ever guests! Please welcome the A-TEAM (different A-Team) to the NEVERTHELESS, PERSISTING podcast!

Dr. Amy's friends, Amy (different Amy!) and Alyssa pinch hit for Lance and we have quite a time. There are haiku, which we've used for connecting (with each other) and coping (with sh!t). We reflect on how we've managed to support each over the decades and across the miles. Someone digs up poetry prosed nearly two decades ago (are there laws against that?) and one of us gets roasted. Through it all, what remains is a steadfast love for one another that we'll never doubt. It is this that most gets us through the hardest of times. And I'd bet it is something akin to this that works best for Dolly, too.

WHAT WOULD DOLLY DO?

I am one of those fortunate souls who has been gifted with more than my fair share of loving people in my life who truly get me. They accept me and the wild wacky unpredictable world that is chronic illness.

I, together with two of those particular peeps, make up what we call the A-Team. Most deets are top secret but what I can share is that we are an elite team of awesomeness, love, support, and understanding. And we're really f*cking good at sh!tty haiku.

In the years since I’ve been sick, both A-Team members have sent me a variety of incredible, nay INSPIRATIONAL, gifts. Two such gifts were t-shirts honoring Saint Dolly Parton. In honor of her holiness and my A-Team pals, I present to you, a bit of haiku poo.

WHAT WOULD DOLLY DO?

What would Dolly do?

Whatever the hell she wants!

Dolly, take the wheel!

Continues at https://substack.com/@neverthelesspersisting/note/c-109421285

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Do You Believe Me?

Fri, 11 Apr 2025 08:36:00 GMT

Themes for today include the joys of invisible illness, dealing with skeptics, the firm grounding that people who actually DO believe us provide, and thanking Republicans for the Americans with Disabilities Act (and of course giving them sh*t for everything else they do). It's like life; full of contradictions! Have a listen! And, if you like what you hear, we'd be ever so grateful if you'd share the pod with a friend and/or give us 5-star review. THANK YOU, hugs, and kisses!

DO YOU BELIEVE ME?

I’m terrified that you’re like I was. A skeptic. And why shouldn’t you be? People believe their eyes. Look at me. I look fine. No limbs missing. Nothing visibly leaking (I’ll spare you the deets on my colon, bunghole, and the havoc Long COVID can wreak on one’s innards).

You’ll only catch me in a wheelchair at the airport and if you see me there, you won’t know it. I’ll be incognito; wrapped in layers of clothing (baby, it’s cold inside), noise-canceling headphones (sounds kill), sunglasses and/or eye masks (ain’t no florescent light making its way to me), and immersed in the deepest of deep meditations (if you can’t escape physically, do so in your mind).

Continues at https://amyblackstonephd.substack.com/p/do-you-believe-me.

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Finding Joy, one memory at a time

Fri, 04 Apr 2025 07:18:00 GMT

We're leaning into joyful memories, appreciating the people in our corner, and reflecting on Dr. Amy's glory days as Wined Up, #13abv, Central Maine Derby's definitively not-best past player. A good time was had by all. We also reflect on the importance of hobbies for getting us through hard times, particularly those we face while living with Long COVID. We hope you enjoy this episode as much as we enjoyed recording it!

FINDING JOY, ONE MEMORY AT A TIME

I spent a good portion of the ‘70’s curled up around my parents’ record player, listening to Jim Croce croon about the Roller Derby Queen he’d fallen in love with – a woman whose fans called her Tuffy and friends called her Spike.

Tuffy, Spike to her friends, raised eyebrows. She was a woman loved for her strength, one “built like a ‘fridgerator” who “knew how to scuffle and fight.”

As a girl, I never wanted to be a princess. But this roller derby queen thing? This was the sort of royalty I wanted to become one day.

Continues at https://amyblackstonephd.substack.com/p/finding-joy-one-memory-at-a-time

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Does Not Bear Repeating

Sat, 29 Mar 2025 19:14:53 GMT

Thank you to the brilliantly talented Deb Talan, formerly of The Weepies, for inspiring today's episode.

Today we're diving into medical gaslighting - what fun! We also talk about some of the ways we've worked to fight back against it, advocate for ourselves as patients, and express gratitude for the good providers out there.

DOES NOT BEAR REPEATING

This is not the way I thought it would be
Thought it would be much lighter
This is not the way I thought it would be
Thought it would be much brighter
...
I thought it was once but it was again and again and again
-The Weepies

I took a comparative health care class in college. We started in the U.S. and then visited Vienna, Budapest, and Prague. It was 1993. The class was designed to compare medical care in “developed” countries (in this case, United States and Austria) to that in “under-developed” countries (which in 1993 happened to be Hungary and the Czech Republic). And yes, “developed” and “under-developed” are indeed the terms that were used at the time.

I understood the assignment. Like the good Stepford Student that I was, my final paper indicated so: “developed” health care = GOOD, “under-developed” health care = BAD. I took my “earned” A, the memories from my curated hospital tours and carefully selected (and as carefully not selected) set of assigned readings, and carried on with my life, secure in the knowledge that I lived in a nation with the best health care system in the world.

Years later, I got sick. And everything changed.

Continues at https://amyblackstonephd.substack.com/p/chapter-3-does-not-bear-repeating

We reference the definition of medical gaslighting used in this article: https://www.amjmed.com/article/S0002-9343(24)00396-6/fulltext

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Tiny Love Story Rejects (Destination: Bangor, Maine)

Fri, 21 Mar 2025 02:51:36 GMT

We're talking New York Times Tiny Love Stories today. Of sorts. The rejected sorts. Dr. Amy shares one of her many rejected submissions and she and Lance share the variety of ways they each use writing to heal, cope, express, and document their lives and Long COVID journeys. There's also a mea culpa somewhere in there from Dr. Amy having something to do with silver linings and erectile dysfunction (I mean, come on! You want to listen now, right?!). And we sing the praises of the best little city north of Boston - Bangor, Maine. It's got all kinds of characteristics that work for a chronically ill, not-so-mobile couple like ourselves. And lovable humans to boot.

TINY LOVE STORY REJECTS

I’ve tried (many times) and failed (an equal number of times) to convince the New York Times that my Tiny Love Stories are fit to print. No matter. Wiser heads have prevailed at Nevertheless, Persisting and my stories are beginning to gain some traction! The editorial board here knows what’s up.

For those less obsessed with these stories than I, New York Times began its Tiny Love Stories series in 2018 as a miniature off-shoot of its regular Modern Love column. The stories in the series, all 100 words or fewer, span first love, last words, unforgettable hugs, unforgiveable kisses, unbelievable adventures, unimaginable meals, and everything in between. These stories have kept me from sinking into the abyss of Long COVID, the pandemic, the election, the insurrection, the never-ending police brutality against black and brown people, the irony of uniquely cruel immigration policies designed by a nation of immigrants themselves, the madness of forcing parenthood on people not prepared for or interested in the job, … we all know I could go on.

Rather than circle the drain of despair, writing my own Tiny Love Stories has helped remind me of the goodness that surrounds me. It has provided me the gift of recalling the soak-up-this-moment-because-one-day-this-memory-will-save-me memories I’ve banked from 50+ years of living. Writing a Tiny Love Story is like giving yourself an insta boost of oxytocin, no labor or delivery required. ...

Continues at https://amyblackstonephd.substack.com/p/tiny-love-story-rejects

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Silver Linings

Fri, 14 Mar 2025 07:14:00 GMT

TRIGGER WARNING: there's a brief mention of self harm in this episode.

It's Long COVID Awareness Month and we are talking silver linings and counting all the ways that we are #hashtag# BLESSED! Or something like that. In reality, Dr. Amy and Lance talk about what they've learned from their experience with Long COVID, share lessons from others from whom they've learned (shout out Patient-Led Research Collaborative & Brain Damage Diaries on Substack!), and consider how and whether the concepts of silver linings and bright-sided thinking are useful when dealing with the horrors of never-ending illness. It's a roller coaster of emotions, folks. Hold on tight!

SILVER LININGS

It's hard to know what color to pick when you've run out of silver.

I've always been a silver linings gal. Nothing in the fridge but a grapefruit, garlic, stale buns, and a leftover burrito? Operation Stump the Chef it is. Love that show! Case of strep keeping you from that weekend with your BFFs? If ever there was a more legit excuse to indulge in the trashiest of trash bag reality TV, I've never heard it.

But this Long COVID thing? Oof. I tried. Lord knows I tried. Even did my white lady with no actual real problems duty and posted as many damn silver linings as I could think of on ALL the socials.

I have time to nap!

I've learned how to knit!

I like crafting now!

I bake bread!

My husband is the BEST. SO supportive. #blessed

My friends are the BEST. SO supportive. #blessed

My colleagues are the BEST. SO supportive. #blessed

If you didn't know better, you might have thought I’d been #BLESSED with Long COVID. SO many silver linings!

What a goddamn crock of shit. What a steaming pile of poo. Fuck. That.

I am done with silver.

But what color now?

From https://amyblackstonephd.substack.com/

If you or someone you know is struggling, help is available.

988 Suicide and Crisis Lifeline

Languages: English, Spanish

Hours: Available 24 hours

Mentioned in this episode:

⁠Patient-Led Research Collaborative⁠

⁠Brain Damage Diaries⁠ by Christina Van Dyke

⁠Bright-sided⁠: How Positive Thinking Is Undermining America by Barbara Ehrenreich

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

A Year in Doodles

Fri, 07 Mar 2025 08:00:00 GMT

How do we mark the passage of time when we're in limbo? That's the question on Dr. Amy's and Lance's minds in this episode of NEVERTHELESS, PERSISTING. We consider how our perceptions of time have changed since Long COVID, how we mark time, how we pass time, and how all this has changed since the Before Times. Time, time, time... it's a hazy shade of something out there.

A YEAR IN DOODLES

I've been resisting writing an acknowledgement of the new year. Another year of illness. Another year of no cure. Another year of fighting with bureaucrats (which initially auto-corrected to buttercream which I'd much rather fight with).

It's also been a year of acceptance. A year of gratitude. A year of slowing down on purpose, with purpose. Of stopping to notice and appreciate. A year of deep breaths in and slow, intentional breaths out. Trust me. It helps.

Continues at ⁠https://amyblackstonephd.substack.com/p/a-year-in-doodles

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Welcome to NEVERTHELESS, PERSISTING

Sat, 01 Mar 2025 00:16:24 GMT

Isn't Episode 4 the standard introductory episode in every podcast series? No? Well, GOOD because "standard" has never been our way! It's our Behind the Podcast episode! Dr. Amy presents her vision for NEVERTHELESS, PERSISTING. She and Lance then go on to think together about the ways and contexts that individuals do and don't have power in society, how the collective we persist through the crap we encounter, how we resist, and there may be a Peter Cetera tangent somewhere in the middle there.

Welcome to NEVERTHELESS, PERSISTING

Have you ever looked back on a moment and known that’s when everything changed? Now in my 5th decade on earth, I’ve learned that several such moments occur throughout life. For me, a fateful decision to honor a commitment is simply the latest.

On March 10, 2020, I boarded a flight bound for Des Moines, Iowa. I boarded that flight despite the fact that mere minutes before, my employer had banned employee travel due to the emerging COVID-19 pandemic. I boarded that flight with my boss’s blessing because I’d made a professional commitment and I intended to honor it. I boarded that flight and along the way, picked up a companion I haven’t managed to shake: a virus described by some as innocuous, nothing more than a nuisance, a cold, no reason to change business-as-usual. I boarded that flight and I’ve been suffering from Long COVID ever since.

Continues at https://amyblackstonephd.substack.com/about

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

I Love You. I'm Sorry.

Fri, 21 Feb 2025 06:01:00 GMT

I LOVE YOU. I'M SORRY.

Continues at ⁠⁠https://amyblackstonephd.substack.com/p/i-love-you-im-sorry⁠.

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

Dear John(ny)

Fri, 21 Feb 2025 05:01:00 GMT

It's all about Johnny! You know, those terrible, awful, itchy, ugly gowns they make you wear at the hospital. Dr. Amy's breaking up with them, Lance gives us a history lesson, Dr. Amy talks power and fashion, and we all agree that Johnny needs to go.

DEAR JOHN(NY)

Dear John(ny),

You came into my life at a time when I needed you, covering my bits and bobbles as well as your design would allow. For that I must thank you.

Continues at https://amyblackstonephd.substack.com/p/dear-johnny.

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.

World Spins Madly On

Thu, 20 Feb 2025 20:56:00 GMT

Dr. Amy reads "World Spins Madly On" from her Substack then she and Lance discuss life with Long COVID, loneliness, and waking up after having missed the zombie apocalypse.

WORLD SPINS MADLY ON

It's over. That life from the Before Times. I could hardly tell you what it felt like then though everyone else seems fine. They look the same. They act the same. They're still here in body and spirit. I'm pretty certain we'd agree the same cannot be said for me. We - me and everyone else - are living in two different worlds. Mine takes place mostly in my head while theirs spins on as if nothing has happened. Continues at ⁠amyblackstonephd.substack.com/p/world-spins-madly-on⁠.

Intro music: Humoresque by Antonín Dvořák from Suzuki Flute School Volume 3; Played proudly and poorly by Amy Blackstone

Outro music: Moon Over Ruined Castle by Rentarō Taki from Suzuki Flute School Volume 1; Played proudly and poorly by Amy Blackstone

For more information, go to amyblackstonephd.com.

Hosted on Acast. See acast.com/privacy for more information.