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

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

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.

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

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

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

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

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