Life as you know it isn't coming back (and that's okay)
Plus, the Antidote #50: long COVID as autoimmune disease, Black maternal mortality, the window of tolerance, and holiday movies!
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.
If you are new here and curious about the tools that have been helping me in my long COVID recovery, please check out the Recovery Tools series tab on my Substack site. (Please start with part one, as it includes an important disclaimer about how highly individualized recovery tools can be with a heterogenous illness like long COVID).
Paid supporter shout outs!
A big Tonic thank you to Deb for buying me a coffee! A few coffees, actually. So generous!
The Tonic will always be free to read - Amy is so happy you’re here! However, if you are valuing the experience and are able, please consider a show of support by upgrading to a paid subscription. If that’s too much to bite off at the moment, you can also make a one-time contribution through Buy Me a Coffee. Any help is appreciated! Anyone who does gets a 📢 in an upcoming post. Thank you!
The Tonic goes on break
I’m starting training for my new job next week, so my weekdays are about to get a lot busier. For that reason, I’m keeping things goosy around here - I may drop down to one post a month, or I may keep my biweekly cadence and do more Antidotes (link roundups) than narrative posts. We shall see. This is the new me: holding things lightly, adapting to changes as they come, loosening my grip on lifelong perfectionism. This fits in nicely with this week’s topic. More on that soon.
There will be no post on 12/20. The next post will be…1/3/26? Maybe. Probably. Who knows.
If you usually enjoy the holiday season, have at it and I wish you all the merriment.
If you usually white-knuckle it through, godspeed. There’s a great Jonatha Brooke lyric for you (from the song Secrets and Lies): “Once a year the holidays come swinging at your head, feast until you’re full of pain again.” Ouch.
No turning back
When I started this newsletter back in July 2023, I was a pretty sick puppy (had been all my life, yuk yuk). But for reals, I was ill. Not the sickest I had been with long COVID, which began in March 2020, but not amazing. Nowhere near what I’d consider actively recovering. I’d say that didn’t really start in earnest until sometime in 2024.
When I started here, I created a list of writing prompts in the Notes app on my ‘flat thing’ (how comedian Paula Poundstone refers to smart phones). Over time, I checked them off as I wrote posts, and I also added new ones along the way. I haven’t looked at this list in a long time, because going this year from 75% recovered to near 100% has me thinking different thoughts. But I was at a loss for a topic this week, and so for shits and gigs, I opened up it up. The fifth topic down and still untapped was today’s: life as you know it isn’t coming back (and that’s okay).
The reason I find this curious in December 2025 at near fully recovered is that this wasn’t a recovery-oriented topic when I jotted it down in the summer of 2023. If I had come up with this idea today, it would most certainly be that. But back then, it was a topic about acceptance.
The kind of acceptance you move toward after getting a new-to-the-world, disabling chronic illness comes only after a cheek-to-cheek slow dance with grief. What you’re grieving is fairly obvious: key parts of the life you had. We grieve because we love.
For me, I grieved things like a career I was convinced that I loved and that more than paid the bills, the ability to hike mountains when I wanted to and to play competitive volleyball, and other less tactile things, such as identity (as someone who could do all of the above) and a certain (perhaps cocky) take-my-abilities-and-good-health-for-grantedness.
What immense privilege. And oh, what a precipitous drop, losing all those privileges in one fell swoop.
So, the grief. The crying, the journaling, the therapy, the wistfulness watching folks around me carry on, either with my beloved activities or with any that I was no longer capable of even contemplating (whether or not I ever actually did or tried them - and why hadn’t I? Missed opportunities = something else to grieve).
The only way to get to the other side of grief is, well…through it. There are no shortcuts. This is both the agony and beauty of the human condition. The inevitability of suffering, and the lessons that suffering teaches.
Which brings us to acceptance, which comes on slowly and overlaps with grief as grief begins to fade (even if it never fully goes away). Accepting what is here right now, what the current reality is and what little control one has over it takes tremendous patience, courage, and self-compassion. Fighting against it is perhaps a very human emotional survival mechanism (layered atop the physical survival struggle of our newly dysregulated nervous systems, stuck in a perpetual fight-flight-freeze-or-fawn).
Acceptance, for me in this very specific context, meant learning to undo lifelong patterns of perceived control over the outcomes of my life (TFG for therapy, I tell you, because this is no easy work and this part took me upwards of three years). It meant loosening the grip. It meant coming to terms with the fact that medical science also didn’t have the answers to my problems, and that sometimes in history, this happens (see HIV/AIDS for the first 15-20 years and so many other diseases).
It meant allowing feelings of sadness and disappointment and sometimes anger to exist and flow through, rather than springing into action to tamp them down or push them away. It meant slowly starting to see the small glimmers of beauty in everyday life - the sparrow in the bushes, the shapes of certain leaves, the smell of food I craved, the feel of a hug from Baldy, the way a cat slow blinks at you when it trusts you.
It started small and built from there. Eventually, thoughts of, “I want my old job back” became, “wow - that job I thought I loved? It was extremely stressful and very likely contributed to me staying sick as long as I did.”
Other thoughts shifted too, like “if I can never hike up a mountain again, at least I might be able to go for a gentle walk in the woods.” After all, what was the most important aspect of each thing I thought I wanted back? Was it the physical challenge of making my heart pound as I ascended a steep trail, or the smell of the pine trees along the way?
If I could only ever sit on a bench in a wooded state park, or lay on my couch watching a nature documentary, would that suffice?
The journey through grief to acceptance had me increasingly recalculating my values.
Of course, I now know that grief ➡️ acceptance also had a hand in my recovery, because along the way, I calmed my nervous system down a lot. I got out of constant survival mode, and the inflammation in my body came way down over time, allowing my body to be in a healing state.
So while I told myself that being able to sit on that bench in the woods could be enough, I am now able to hike longer trails again, small hills. Acceptance, for me, was on the way to recovery, not a total acquiescence of my values and wishes, but a necessary weigh station for my psyche and my body.
Grief ➡️ acceptance ➡️ recovery
Where I’m at now
I say that I am nearly recovered because I still sometimes struggle with vestiges of fear, and this brings on mild symptoms. The reason I know it’s fear is because when I finally name it as such and process it, the symptoms abate pretty quickly. My brain throws these symptoms at me in a last bid effort to warn me, to keep me safe. It’s just doing its job, and while I love it for that, the thing is, I am safe. When I realize what’s going on and remind my brain of that fact, again the symptoms subside.
So, at nearly recovered, I could choose to get my life back as I knew it. I could take on a full-time, executive level non-profit job. I could find a volleyball league, I could hike big mountains.
Life as I knew it is not coming back, and I’m okay with that. Because now it’s that I choose for it not to.
I’m choosing new work (therapy and coaching) that affords me the flexibility to take better care of myself throughout the day. I’m choosing to hike, but more gentle ones that allow me to appreciate the smells, sights, and sounds along the way. I’ve played volleyball only once, but I’m now playing pickleball; a lower intensity way to scratch my itch for sport and competition.
Maybe your life as you knew it is also not coming back, and you’re still not totally okay with that. Maybe you have long COVID or ME/CFS, or have had another illness or life situation that caused you to recalibrate your values and choices. Or maybe you have come to a place of acceptance of that fact, but are struggling to be good with the idea that your current capabilities and choices may be where you spend the rest of your days. In other words, something resembling partial or full recovery may seem or actually be unattainable for you, and for those reasons, this might be a hard post to digest.
All of this is okay. It’s welcome here. And it’s 100% relatable, because in those sentences above, I recognize myself at different points in my long COVID timeline. If this is you, perhaps you are still on the grief ➡️ acceptance highway. My hope for you is that you too can find the glimmers along the side of the road.
In that spirit, I recommend a few books that really helped me along that highway.
How To Be Sick by Toni Bernhard
The Chronic Illness Workbook by Patricia A. Fennell
Resting in Presence: Reflections from the Heart of Healing by Marie-Eve Bonneau
Poetry of Presence: An Anthology of Mindfulness Poems, edited by Phyllis Cole-Dai and Ruby R. Wilson
Stay gentle with yourselves, my friends. See you in the new year.
COVID, Long COVID, and ME/CFS
🦠 The viruses are here: it’s the “most wonderful time of the year” - virus season. Norovirus is rising right now and is awful.
😷 Masking: here’s a great post by M (is) Living with Long Covid on how to return to masking (just in time for that nasty norovirus and the crazy flu strain that’s starting. Oh, and COVID, RSV (which my family has gotten recently), and all the other things). And here’s a review from Wired on the best face masks. I personally favor the Powecom masks, and they do come in colors, as M suggests in her post seems to minimize people being critical buttinskies.
💉 Vaccine myths: a post by Unbiased Science on the myths that just won’t die. Also, from NPR: navigating vaccine misinformation with a pediatrician.
🥾 Chronic disease ‘journey’: don’t call it that, according to this guy. I’ve definitely been guilty of this. Though I don’t necessarily think a journey has to imply positivity. But also? Some of my own experience has been positive, in that there are ways of living I’m never going back to and I’m glad to have learned that lesson, even if via the hard way.
🤧 Long COVID as autoimmune disorder: Health Rising brings us the latest from Akiko Iwasaki’s lab at Yale.
Resources
🩺 Prepping for medical appointments: a super helpful blog post from earlier this year by CraftingOnTheCouch.
🪫 Caring for your mitochondria: a wonderful interview of Mardi Crane-Godreau, PhD, who in addition to being a recovering long hauler has a wealth of knowledge and experience in health, immunology, and trauma.
🫁 Breath practices: two free short sessions from Breathing for Long COVID & ME/CFS. One releases on 12/26 and the other on 12/31. Click on those links to sign up.
🪞 Reflection workshop: ring in the new year via Zoom by engaging in some regulating skills and practices with Steph Fowler, LCPC, CADC.
Health miscellany
💪🏾 Protein: 18 foods that have more of it than an egg.
🧠 Lifespan brain changes: your brain undergoes four dramatic periods of change from age 0 to 90.
👩🏾🦱 Black maternal mortality: were you aware that Black women in the U.S. are three to four times more likely to die in childbirth than White women? That statistic should blow everyone’s minds. Here’s an opinion piece on why Black women shouldn’t have to engineer their survival in the delivery room.
💉 HPV vaccination: tied to huge reduction in cervical cancer risk.
🏥 U.S. healthcare: five ways our system has become out of control, a post by Your Local Epidemiologist Katelyn Jetelina.
😡 Government fuckery: we start with the CDC, since ‘tis the virus season. CDC Quietly Turned Off Its Vaccine Search Tool. It’s Not Clear When It’s Coming Back. And Inside the CDC whiplash, which features struggling CDC workers and denials by HHS that anything is wrong, naturally. And this one hits my actual home: After Shutdown, Federal Employees Face New Uncertainty: Affording Health Insurance. We have these benefits and the rising costs are outpacing those from the private sector. Then Trump administration warns it will withhold some SNAP funds from states that don’t share data. Can you say BULLY? In gender fuckery news: US Cancer Registries, Constrained by Trump Policies, To Recognize Only ‘Male’ or ‘Female’ Patients. And this absolutely non-sensical head hurter: Trump administration plan to exclude nursing from professional degrees sparks outcry. I can’t help but feeling this is just part of their covert attack on women, and on independent women to boot (yes, I know there are male nurses like Greg Focker, but the vast majority are women). Lastly, in state level war on women news: Republican-led states challenge FDA approval of new generic abortion pill.
💪🏼 Fighting back: sadly, I’m seeing less and less out there. Is it not happening as much? Is the media not covering it? Who knows. But there was this: SNAP Benefit Rules Spark Legal Challenge From 21 States. And this: US judge blocks Trump from cutting Medicaid funding for Planned Parenthood in 22 states.
🚫 Eradicating autoimmune diseases: CAR-T therapies send autoimmune diseases into remission. This could be huge news once it becomes standard treatment.
🏳️⚧️ Trans healthcare: from Erin Reed, a post on a study in the journal of pediatrics finds trans youth care lowers suicidality, with few detransitioning. Don’t let conservatives try to convince you they actually care about children while they actively work to take away life-saving healthcare. Also? This was disgusting and I would have expected better from Memorial Sloan Kettering: A trans woman secretly recorded her doctors during cancer surgery. She’s suing over what she heard.
🦖 T-rex sleep position: it feels cozy and comforting, but it’s cutting off your circulation and possibly causing nerve damage. I sleep like this almost every night (sigh…). There’s some talk of it being a trauma response, or an attempt by an activated nervous system to protect against a perceived threat. I’ve been consciously trying to extend my arms once I’m warm.
Inspiration & Recovery
🤳🏼 Stop tracking: Dr. Talia with Your body isn’t a case to solve. Letting go of my paper tracking, my wearable tracking, and my Dr. Googling contributed to my recovery, though she’s not touting it as a recovery tool. More of a softening, “you are enough” approach, which I wholeheartedly endorse.
🪟 Window of tolerance: your nervous system’s comfort zone. Have you heard of it? Micah Larsen explains it beautifully here.
🧫 Mast cell activation syndrome: I recently got off of all three of my MCAS meds and while that was a bumpy downhill ride, I have now stabilized. I’m convinced I needn’t have been on them for many months, ever since I truly regulated my nervous system. Here’s the Mindful Gardener with his hot take.
🎄Holiday viewing: watch these 22 movies and specials, according to the LA Times. Warning: I watched ‘A Merry Little Ex-Mas’ on Netflix, and I’ll never get that hour and a half back. Skip it. (Also, if you’ve never seen ‘The Family Stone’, what the hell are you waiting for? So, so good). And here’s something that didn’t make the list: the Dancing with the Stars holiday special on Disney+/Hulu, where I gained back an hour of pure delight.
🎶 Greatest songs of the 21st century: so far, anyway. 250 of them. I have multiple problems with this list, including the fact that Hozier’s Take Me to Church appears nowhere on here, and Rolling Stone should be utterly ashamed of themselves.
🤦🏻 Buffoon of the week: This Italian man, who dressed up as his dead mother in order to try to continue receiving her pension. Although the staff at the benefits office thought he looked suspicious and reported him, I say he did a pretty convincing job, wouldn’t you?
🏆 Winner of the week: This week our winner is NPR for having Brandi Carlile back on Tiny Desk Concert. It made a lot of people’s weeks, including mine and my big sister’s (and we have tix to see BC in February - yay!). Also, if you’ve never experienced the talented musicians SistaStrings who play with BC, you’re in for a real treat.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Fritzy makes the big time!
Here he is taking online yoga with me (or…preventing me from taking online yoga, if you’re a glass-half-empty kinda cat).
Thanks for including my essay in your resources. I enjoyed reading about your grief to acceptance to recovery journey. It has mirrored much of my own, though I wouldn’t call myself near recovery yet. As you beautifully wrote, I have learned to enjoy what I’m capable of now and know it’s enough even if I never regain the abilities I once had and continue to grieve. Good luck with your new job!
“Dancing cheek to cheek with grief” I loved that. So much packed into those 6 words!
I’m so glad to see how your journey has evolved and how much you’ve grown as a human.
I’ve often wondered if all you outline here is why chronic illness is taking us down in the millions.
Because maybe this is the collective awakening journey we are on.