Let's talk about death, baby 🎶
Plus, a book recommendation and The Antidote #23: the wonders of metformin, the language of war as health metaphor, and chronic illness joy and laughter
The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.
Wish list shout outs!
Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits).
I’m rounding the corner on one year of the Amazon wish list and this week I’d like to give a special shout out to my repeat-gifters (there are several of you out there!). I am truly tickled anytime I open a gift from a reader (I especially love the notes inside), and when I get something from a repeat-gifter, I invariably go, “oh, (so-and-so!)” (insert name).
A big Tonic THANK YOU this week goes to two lovely repeat-gifters: two-timer Mardi C. and five-timer Florrie B.
The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. There’s something for every budget and any help is appreciated. Anyone who does gets a 📢 in an upcoming post (be sure to include a note with your gift). Thank you!
An update on my shoulding
Dearest gentle reader, you may recall that in my last post, I discussed ways to possibly streamline what I’m doing here to accommodate that Venn diagram of my spoons, current time limitations, and the kind of content you most enjoy from The Tonic. Thank you to all who took the time to give me your thoughts on this. It seems most were okay with me sticking to my Substack-famous somewhat popular link roundups for each post with some narrative tacked on in the beginning. As time/spoons allow, there may be a long-form narrative post sprinkled in there. So that is the plan moving forward.
Let’s talk DEATH
*Content warning: while this is not related to Long COVID, health-related deaths, or suicide, I realize that death talk can still be triggering for some folks. What follows is more about the practical aspects of death’s aftermath, if that helps. If not, feel free to skip to the next section, which should be a bit more uplifting.
I think about death a lot, possibly more since long COVID has made me feel my own mortality more keenly. Specifically, I think about what a pain in the kumquats death is for the poor bastards who get left behind.
My father died when I was 17, my mom when I was 24. I wasn’t the executor of their wills; my older siblings did most of the heavy lifting. But some years later, I became the legal guardian of a beloved spitfire of an elderly aunt, and when she died, I felt more pain in my ‘quats than I did with my parents. There was much business to take care of and it was bureaucratically entangled and exhausting.
About a year and a half ago, I started to worry about how lost Baldy would be should I buy the farm before he does, since I handle most of the business-related aspects of our household and union. But I worried for me too, since I know firsthand how the death of a loved one can be so shocking as to make scrambled eggs of your executive functioning. Amazingly (and thank goodness), Baldy at 63 has yet to experience a death significant enough to rattle his cage.
But judging by how hard it has been for us both during the health scares and deaths of beloved pets, I decided to get out ahead of the trauma and set us or our loved ones up for ‘success’ by creating what we refer to in our house as “the Death doc.”
No, not that death doc. This doc = document. (Though I am a big fan of the death with dignity movement. RIP, Dr. Kevorkian).
The official title of our Death doc is “Because I could not stop for death, he kindly stopped for me.” (Bonus points if you know who this quote is attributed to - no googling!)
The shorthand title is the Death doc, because, well…the other title is too long for everyday use.
So, what is a Death doc? It’s a Word document I created that contains everything anyone would need to know in the event of my and/or Baldy’s untimely demise. It contains headings such as:
Passwords/combinations
Retirement accounts
Life insurance
Homeowner’s and umbrella insurance
Bills
Locations for key things in the house
Final wishes
Details for each section are bulleted and include due dates, contact information, and other details necessary to sorting matters out. (In case you’re wondering, our wills are in our safe, and that’s covered by the “combinations” under the first heading).
I edit and save the Death doc every 4-6 months, or as key details change and I remember to do it. It is saved on my computer and on Baldy’s, and a copy is printed out and placed strategically in my house. I send my big sister a picture of where it is periodically, and I believe she thinks I’m cuckoo for Cocoa Puffs, but I don’t care.
One day, she’ll thank me. Even if I have to haunt her to hear it.
What about you?
Have you put any simple or elaborate plans in place to make the aftermath of your life easier on others? Let’s hear about it.
If not, I highly recommend doing it. It’s a light lift and can be done in phases based on your energy. And don’t be upset or discouraged if you do not have a partner or much family; the doc can be a great gift to leave to a friend as well. In fact, it may be even more useful in situations where there aren’t clear next of kin.
Shifting gears with a book recommendation
Friends, I’ve just finished a book that I believe will land in my top five books of all time. It is not a recovery book per se, but there is so much wisdom contained therein that helped me gain perspective on my own recovery and on my life as a whole that I felt I must pass it along to others.
A Therapeutic Journey: Lessons from The School of Life is written by Alain de Botton, a writer and modern-day philosopher.
I first came across de Botton’s work a gazillionty years ago during my NYC days while browsing around the Barnes & Noble in Union Square. I randomly picked up his book On Love, a sort of pseudo-philosophical novel about what it was like to fall in love, to be in love, and for that love to end. It instantly became one of my favorite books because I was very much in my falling-in-love days and also because de Botton writes what I can only describe as beautiful and accessible philosophy, based on modern-day matters but with all the existential questions and ponderings of the philosophy greats. Having taken a philosophy course in college that I found stimulating but really hard to grasp in places, de Botton’s books feel like a sign held up specifically for me, saying, “welcome back - yes, you belong here. Bring your brain and your heart.”
The topic is ostensibly about mental health, but it is really about the full arc of mental wellness, relevant to anyone who identifies as a human being (and feeling). Consider the description on the back cover:
This is a book about getting unwell. About losing direction and hope. About imagining that we have let ourselves and everyone down.
But it is also a book about getting better. About regaining the thread, rediscovering meaning, and finding a way back to connection and joy.
Losing direction and hope? Check. Regaining the thread, returning to connection and joy? Check, check, and check. What is the chronic illness journey, and recovery, if not precisely these things? It was so relatable to me that I got out a turquoise-inked pen during the early pages and found myself underlining multiple lines in each chapter.
In addition to the book being applicable to just about everyone, the structure of the book is also extremely spoonie friendly. Sections have titles like Challenge, Love, Art, Freedom, and Hope. Each section consists of short chapters (1-4 pages long) on various aspects of the section titles. For example, the section on Challenge, which lays out the “getting unwell” aspect of the book, has chapters on the breakdown, on self-knowledge, on childhood, on community, on psychotherapy, etc. My favorite section may have been the one on Art, where de Botton includes depictions of various works of art while exploring themes like being present, melancholy, grief, etc.
I had been enjoying the book in bite-sized readings, which honestly felt delicious and permissive (I usually feel some amount of self-imposed pressure to read books more quickly, probably due to the huge number of books sitting on my TBR shelf at any one time). However, last week, we experienced an internet outage that lasted about 24 hours, midday to midday. Even with turning off the WiFi on my phone and just relying on data, I was unable to open Substack along with many of my go-to kill-time apps. At first, this felt super foreign and unmooring: who am I if I can’t absorb myself in other people’s newsletters, in the New York Times word games, in Instagram, in my meditation apps? I could receive and open emails, but I could not follow any links in them, which also curtailed my curation activities re: The Tonic. I felt adrift for a short while.
Then I remembered this book, and how I had been hoping for some time to hit the gas on it. Well, here it was. I curled up in the corner of my couch that night and read mini-chapter after mini-chapter, pausing in between the particularly thought-provoking ones to, well…think.
I eventually came across this chapter:
WHOA, universe - you got my attention, loud and clear.
I leave you with two stunning quotes that really landed with me. They are from near the end of the book.
As nature seeks to tell us, we cannot permanently be in flower. We need moments of repose and confusion. There is nothing to fear. Things will re-emerge.
This one left me feeling satiated and hopeful:
We are still here, mentally ill at times, no doubt, but more than ever committed to recovery, appreciative of the light, grateful for love, hungry for insight, and keen to help anyone else whose plight we can recognize. We are not fully well, but we are on the mend and that, for now, is very much good enough.
I hope wherever you are on your health and wellness journey, you find something here that speaks to you or piques your interest.
The Antidote #23
I’m trying something new this time at the request of a reader who is a long hauler: putting the topic of each link in bold at or near the beginning of each item listed. I’ve also almost entirely stopped using GIFs and will try to stick with still images and memes. If any of you are having any visual difficulties with the formatting of my posts, please get in touch and let me know.
COVID, Long COVID, and ME/CFS
📄 Long COVID resource sheets: brought to you by The Sick Times x Long COVID Justice. Available in Spanish too. Get them here.
🤔 Study puts understanding of long COVID and vaccination into question. Link here.
🛜 Helpful website - Long COVID The Answers: Credible Information & Relief, launched by Dr. Funmi Okunola, MD.
🧪 COVID-19 tests - the U.S. is sending up to four more tests to households toward the end of September. Bookmark this link and/or create a reminder to check back.
💉 Fall vaccines - top six questions answered.
📃 Assessing functional capacity - many thanks to
for this post, which includes a link to the FUNCAP27 assessment, “a new tool to communicate functional capacity that helps capture symptom exacerbation caused by normal activities.” I printed out a copy and completed it, and I found it much more useful than some of the other scales/assessments out there. I then printed out a few blanks so I can complete it every 3-6 months or so.👺 Mask bans are dumb and dangerous - thanks to The Sick Times for boosting this editorial on the proposed ban in New Jersey.
💊 Metformin - Prevalent metformin use is associated with a slightly lower incidence of death or PASC (long COVID) after SARS-CoV-2 infection. Link to study here.
☠️ Passing along a fatal COVID infection - Austrian woman is found guilty of fatally infecting her neighbor with COVID-19. It’s pretty evil to knowingly pass along a potentially fatal virus to someone, though I’m sure it’s happening all the time all over the world with COVID-19 and this woman was unlucky (stupid?) enough to get caught (twice!).
⚰️ Excess mortality - Covid-19 may lead to longest period of peacetime excess mortality.
🤨 Disturbing trends in long COVID and ME/CFS research -
takes us through some bothersome trends they’ve noticed recently.Webinars/conferences/podcasts/videos
🧠 Alan Gordon with more on the role the brain plays in keeping chronic pain going (this is the basis behind the Curable app, which I will be discussing in an upcoming post). I find Mayim Bialik’s podcast episodes become rather annoyingly centered on Bialik. If your spoons are limited, skip to the 15-minute mark to hear Gordon start explaining the science.
🤞🏽 Professor Jarred Younger with some hopeful updates from the 2024 Stanford ME/CFS Working Group meeting.
🩻 Skeletal Muscle Fatigue and Post-Exertional Malaise in Patients with Long Covid and Implications for ME/CFS - a webinar hosted by Solve M.E. on October 3rd at 12pm EST. Register here.
😊 Healing Trauma with Compassion-Based Approaches - free online conference, September 24-26, featuring heavy hitters such as Dr. Gabor Mate, Dr. Richard Schwartz, and Dr. Kristin Neff. Register here.
♿ Long COVID and SSDI: recording of the recent webinar hosted by Pandemic Patients on Social Security Disability Insurance (anyone can watch, but only U.S. residents are eligible to apply).
🫁 Shortness of breath in Long COVID - I’ve had a recent resurgence of mine. This 20-minute talk by David Systrom helped explain why it happens to us.
🤔 Ever wonder what exactly occupational therapy is? I know I have.
hosted OT Amy Mooney on her podcast recently, and I found it quite illuminating. Here’s the link on Apple, but you can also find it on Spotify and probably other platforms as well.🫱🏼🫲🏾 2nd Canadian Symposium on Long Covid - October 3-4th. For more info, go here.
😤 Pressure to Heal Will Delay Recovery - an important message from Pain Free You’s Dan Buglio.
Health miscellany
🤕 Headache When Lying Down: Causes and Treatment. I get these kinds of headaches a lot, so this caught my eye.
💊 More on metformin: The brain aged more slowly in monkeys given a cheap diabetes drug.
🥵 Half-marathoner died in the heat after posting about not feeling well before the race. Listen to your body, folks. Thousands die from heat-related illnesses every year. Why does the government do almost nothing about it? (“Fun” fact: the state of Florida passed a BAN on allowing local municipalities to require rest breaks for workers in the heat. People’s histories and rights are not only being erased; it’s like the government is actually okay with people just…dying).
🤦🏻 The origins of Trump’s false claim that Democrats want to allow ‘execution’ of babies after birth, described in the article here. Note the hypocrisy of Trump calling ‘execution’ what is essentially hospice for babies that won’t survive long after birth due to profound health problems, and the advice he gave his own nephew, Fred Trump III, about how he should just let his disabled son die because his care is costly. Bottom line: Trump doesn’t give two shits about unborn or living babies. He’ll drum up lies and outrage in a shameless grab for votes.
🫖 Green Tea Is Even Better For You Than You Think - read about it here. I keep trying to drink it, but my decaf coffee usually edges it out as far as hot drinks go.
🎓 Navigating University Life with a Chronic Illness: some helpful tips.
🧿 Mammograms - New FDA mammogram guidelines shifts what patients should know.
🚸 The Emotional Toll of Chronic Illness in Childhood - article here (free MedPage Today account required).
😖 Intimate Partner Violence Tied to Working Memory Decline Into Menopause - see article here (free MedPage Today account required).
🦟 Mosquito-borne illness -
with a guest post on a mystery illness.
🦀 Cancer and language - Has COVID-19 changed the way oncologists talk about cancer? I am personally not a fan of using war metaphors and language to talk about dealing with illnesses; it feels too dramatic, too jolting and violent for me. Not to mention, what of those who handle their illness with bravery and strength but ultimately succumb? We often, consciously or subconsciously, think less of countries or groups that lose wars or battles. As I discussed in a recent post, we’re in control of some aspects of our health, but not others. While war language is meant to be empowering and to keep a patient’s spirit “in the game,” so to speak, it’s clear there are patients who will face their illness with hope and gumption without needing to embrace such aggressive, often cut-and-dry language. That said, this is my opinion; I respect that use of language around one’s own illness is a matter of choice and comfort.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🤣 FUN: Are you following
here on Substack? I learned about him through ’s excellent podcast, A Friend for the Long Haul (check her out, too!). I also discovered his hilarious Instagram account that couples chronic illness themes with FUNNY. Check him out:
☀️ Joy and positivity: we’ll keep this theme going. Check out
’s wonderful post.
👎🏽 I guess it was the Paralympics’ turn to make a supremely craptastic decision: Paralympian Marathoner Stripped of Medal After Helping Her Guide at Finish Line. I feel very bad for this runner, as well as for her guide.
😆 Comedian Taylor Tomlinson is very funny, IMO. Check out her comedy specials on Netflix. Read about her here: 'After Midnight' host Taylor Tomlinson is ready to joke about her bipolar II. Mostly.
🤦🏻 Buffoon of the week: failed billionaire, felon, and rapist Donald J. Trump is the loser here once again for saying that actual billionaire Taylor Swift will ‘pay a price’ for endorsing Kamala Harris. Kind of ironic, considering he’s never paid a price in his life for anything.
🏆 Winners of the week: We have two this week.
1) ER nurse Miles Crawford, who rescued a man trapped in hurricane floodwaters. He broke the window on the man’s truck and pulled him to safety just before the truck was fully submerged in water.
2) Toh Hong Keng, a retired Malaysian executive who just graduated from medical school at 70. Here’s Toh on the stretcher with his fellow classmates.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Lots to report this time.
First, we pay homage to sweet Carrot,
’s cat who became Substack famous in Louise’s “Carrot Watch” series in Notes. RIP beautiful girl.Second, interesting study about how cats squeeze themselves into the tiniest of spaces: Yes, cats are liquids—but only in one dimension. Favorite quote: “Unlike dogs,” Pongrácz says, “cats never stop trying.” Ain’t that the truth!
Third, new CatStack alert!
And finally, it’s Birdie the Buddha.
the second one should be a meme
Amy, your death doc idea is something my mother has been telling me to do for years. I do (finally) have a will, health directive etc, but I agree that I also need to make sure someone knows all the practical stuff too. And, it makes me realize that I need to bug a good friend to do it too. I’ve agreed to be his executor so I am going to need a list of all his accounts, passwords etc. Thanks for bringing this up!
Pa and I have been working on our will for several weeks. It has been particularly challenging as we are a “blended” family which is where the drama starts. I think that working on some practical issues,as you suggest, might be a better place to start rather than concentrating on who gets what! Btw, you are getting most of it🤑