What a world: when natural disaster and disability intersect
Plus, The Antidote #32: long COVIDing while Black, ME/CFS research, physicians for and against Gaza, and...Girl Scout cookies!
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.
What a world
Switching sections around here today, because I can’t launch into wish lists and links before mentioning the plight of those who are fleeing from and losing their homes in Southern California, as well as that of the firefighters, the first responders, and the aid workers coming from far and wide to help these communities. This particular disaster has made me lose sleep - not because I know anyone who lost their home (I think), but because the images in the media are haunting. I can see how easily the same fate could befall me and my neighbors; we have had a couple of official droughts in the past few years, and we live in a very wooded area. This line from the Indigo Girls’ song The Philosophy of Loss keeps running through my head:
“whatever has happened to anyone else,
could happen to you and to me.”
These unmitigated climate disasters feel inescapable, very much as if they’re coming for all of us. During these sleepless moments, I turned over and over in my mind what it would take for me and Baldy to evacuate ourselves and our three indoor kitties (anyone who has ever tried coaxing a cat into a carrier when there isn’t a crisis knows how worrisome the idea of needing to leave quickly can become). Sadly, our two outdoor feral kitties still do not allow us to touch them, and trapping them could take days. They’d likely be left behind to fend for themselves, sadly.
I also mentally ran through the contents of my current “go-bag” and felt more and more that the contents would be woefully inadequate if I needed to be away from home for any extended length of time. The Disabled Ginger posted this Note, which interrupted my own ableist thoughts and turning to others more disabled than me, and the sheer impossibility of a hasty evacuation for many of our disabled friends, especially those who live alone:
For more on what unmitigated disasters could mean for the disabled, check out a personal perspective in Is it all ending? by Krista (she/her). And for a deeper dive from Al Jazeera a few years back, check out the special video segment Why are people with disabilities left out of disaster planning?
I don’t know if any of us are surprised that our governments once again leave the most vulnerable among us to fend for ourselves. For now, regarding these wildfires, I’ve managed to snap myself out of panic mode and recognize that, in my current relatively able-bodied disabled state, none of this is about me, sitting in my intact home, surrounded by all my photos, mementos, keepsakes, important documents, and of course, my Baldy and the lions. Michael Estrin’s recent post was the splash of water in the face I needed, and as a result I made a small donation to Emergency Network Los Angeles, Inc. Check out Michael’s post for a list of other trusted places you can donate to.
I have also ordered a few things online to bolster up my evacuation needs - a portable litter box and collapsible food and water bowls for the little lions and a couple of fire- and water-proof pouches for important documents and photos. I have a few more things to assemble, but the long and the short of this is that I am, for now, feeling some semblance of control, and that’s the best I can do.
A few related links for those interested
To honor those healthcare workers staying in place to respond to the needs of Angelenos, you can check out this link: Doctors, Nurses Press Ahead as Wildfires Strain Los Angeles' Health Care.
And despite the fact that virtually everyone has left the disabled and immunocompromised behind when it comes to taking COVID-19 precautions, like mask-wearing, here’s a great example of not holding a grudge and doing what’s right: COVID-19 advocates are distributing masks to protect Californians from wildfire smoke. Also, here’s Mardi Crane-Godreau, PhD, a recovering long hauler and scientist with tools for managing air pollution caused by smoke.
I know there are some people who still aren’t connecting the dots between the increased ferocity of natural events and climate change, but to me, if it waddles and quacks, it’s a duck. Hence: Analysis: 5 ways to look at the Los Angeles fires through the lens of climate realism.
Also, if you can’t afford to buy HEPA air purifiers (we purchased a few a couple of summers ago when the Canadian wildfires were sending smoke to NY), here’s an article on how to make your own: How to make an air purifier from a box fan.
Onto our regularly scheduled programming.
Wish list shout outs!
Many of you generous sweeties have chosen to support my efforts here via the Amazon wish list (and now Throne, for those who are loath to support Amazon) in lieu of paid subscriptions, which could affect my disability benefits. A big Tonic THANK YOU this week goes to Melanie W., Kira S. (if you like my vibe, check out her new Substack, Imperfect Working Order!) and also to the kind person(s) who sent me the nail polishes and the sleep mask. If that was you, please reveal yourself! (or you may stay anonymous).
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 or this Throne wish list (for those who are loath to support Amazon). 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!
The Antidote #30
COVID, Long COVID, and ME/CFS
👩🏾🦱 Long COVIDing while Black: please check out my friend Chimére L. Sweeney’s newly launched Substack, The Blackest Side of Long Covid. Chimére has been an outspoken advocate, featured panelist, and badass entrepreneur in the Long COVIDsphere, particularly in raising awareness around The Black Long COVID Experience (also the name of her website and org). If you are not Black - and maybe especially if you’re not Black - subscribe to her newsletter and read a perspective on LC you haven’t known.
🤒 What is Long COVID? Find out in Mel • Living with Long Covid’s post What I actually mean when I say I have Long Covid. (I also highly recommend checking out her post Why I'm grateful to my Long Covid).
🤧 Winter COVID surge: A ‘silent’ COVID surge may hit the US in early 2025, experts warn — here's what that means. Hospitals in the UK are seeing patients facing two-day waits in A&E (their version of an ER).
🔬 ME/CFS research: A 2024 ME/CFS Year in Review Points to Progress - and a Profound Disruption in Energy Production.
😪 Post-COVID ME/CFS: the incidence of it in a new report from RECOVER.
🫸🏾 Preventing Long COVID: can nasal antihistamines do the trick? (also, see a video summarizing this research in the webinars/videos section below).
💉 Vaccine hesitancy among Black women: study pinpoints important factors driving this (requires a free MedPage Today account).
🛌🏻 Severe ME: a critical glimpse into the daily life with the most severe form of the condition.
💊 Paxlovid and Long COVID: a case series on the impact of extended-course oral nirmatrelvir/ritonavir in established Long COVID.
🧠 A neuroscientist and his Long COVID: how he solved the mystery of his own illness (with obviously a lot of privilege and resources, it should be noted).
🤳🏻 Long COVID activism: a great piece on the rise of digital activism among patients by Emily Mendenhall.
♿ Rising disability claims: the writer uses words like ‘puzzling’ and ‘baffling’ and ‘stunning’ and ‘stymied’, but WHY IS ANYONE SURPRISED THAT A GLOBAL PANDEMIC FROM A NOVEL VIRUS RESULTED IN A MASS DISABLING EVENT?? (apologies for the shouting). Check out this chart from the article. Also, read What I've learned about long-term disability insurance providers.
🧪 Randomized control trials (RCTs): The Backbone of Vaccine Safety.
🛳️ A COVID-19 cruise ship disaster story: do not miss this two-part series by Nate Bear of ¡Do Not Panic!: The Arctic Plague Ship That Disabled A Best Selling Author and The Arctic Plague Ship Part 2.
Webinars/conferences/podcasts/videos
🧠 Viral persistence in the brain: a short by Beating Long COVID on YouTube.
👃🏽 More on those nasal antihistamines:
👂🏽 Chronic illness interview: meet Nitika Chopra, the Founder and CEO of Chronicon, a platform and community aimed at empowering people living with chronic illnesses.
🛌🏽 Severe ME webinar: register here for the January 21st (10-11am PT) Solve M.E. and the Bateman Horne Center’s last in a series, this one focused on research.
🖥️ RECOVER seminar: "Ethical considerations for enrolling “invested parties” in large-scale clinical studies: Insights from the RECOVER Initiative,” to be held on January 28th from 12-1:30pm ET. Register here.
🎨 Chronic illness art and visibility: a panel conversation in London on January 30th.
👩🏽💻 Virtual resources galore: check out Justin Clarel’s newsletter so very virtual, which is always chock full of links to great online events, workshops, or other resources. Justin particularly highlights things that support community at its intersections: BIPOC, LGBTQIA+, and disabled (including long COVID), to name a few.
Health miscellany
🥜 Prostate cancer: Let's not call it cancer.
😵💫 ‘Mom Brain’: studies say it is indeed real.
🤮 Norovirus: one chart explains why everyone has a gnarly stomach bug right now (including a person very dear to me).
💤 Bad sleep: it leaves the brain more vulnerable to intrusive thoughts.
💓 Pulse oximeters for all: we’ve covered this several times at The Tonic, but here’s an update - FDA Unveils Draft Guidance to Improve Pulse Oximeter Accuracy Across Skin Tones (free MedPage Today account required).
👨🏾 Healthcare upon re-integration: Barriers and Facilitators to Quality Healthcare for African Americans with Incarceration Histories.
🏳️🌈 LGBTQ+ veterans’ health: Pentagon agrees to settle historic lawsuit with LGBTQ+ veterans over discharge status.
💧 Fluoride in drinking water: Unbiased Science with an open letter to CNN about their misleading coverage.
🚫 Mental health coverage denials: It May Be Because Your Insurer Said You Made Too Much or Too Little “Progress”.
😔 Loneliness: it’s linked to ill health through effect on protein levels.
🧔🏼♀️ Gender-affirming care for youth: Less than 0.1% of U.S. minors take gender-affirming medication, study finds. But here’s a good point: “This particular type of care, there is such a bias against providing, that I would suspect not every transgender or gender-diverse youth who would have benefited from it in this dataset necessarily received it,” said Dr. Alex S. Keuroghlian, who is the director of education and training at the LGBTQ health care organization Fenway Health.
👨🏽⚕️ Physicians and Gaza: The Letter that Outraged Us: The Physicians' Letter Calling for the Destruction of Shifa Hospital in Gaza and on a more ethical, humane, Hippocratic oath-following note, the American Academy of Pediatrics call for Sec. Blinken’s intervention on behalf of top Gaza doctor kidnapped by Israel.
🧠 Creutzfeldt-Jakob Disease: possible early symptom identified. This devastating disease took the life of my childhood best friend’s mom last year at breakneck speed. Click on the link to know what to pay attention to in your loved ones.
🍸 Alcohol and cancer risk: the new guidance you may have heard about, with pretty damning graphics.
👩🏻🦰 Medical misogyny and the disabled: Gisele Pelicot, Medical Misogyny and How Disabled People Face Increased Risk of Abuse.
😡 Health insurance and American rage: the author of ‘Delay, Deny, Defend’ points to 3 reforms that could help. Also, killing people with paperwork instead of a gun doesn’t make you any less of a murderer.
💉 RSV vaccines: the FDA Adds Guillain-Barre Syndrome Warning to Two RSV Vaccines (free MedPage Today account required).
😖 Chronic pain: how to face it with compassion.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🗣️ Gossip: why do we love it so much? A really fun, cartoon depiction with real facts.
😀 Joy as a healthful practice.
🍪 Girl Scout cookies: say goodbye to these two flavors. Also! Order yours from a trans/non-binary Brownie or Girl Scout this year!
😩 The unexpected cause of your daily overwhelm.
⏳ Time is precious: five actually useful, non-platitudinous ways to squeeze more out of life in 2025.
😅 For fans of sibling comedic legends David Sedaris and/or Amy Sedaris: I stumbled upon this more serious conversation they had with Anderson Cooper about grief and loss, and found it really intriguing and oddly comforting.
🤦🏻 Buffoon of the week: this hospital worker caught on camera FLOSSING HER TEETH over a patient, who also didn’t stop doing it when the cameraman tried getting her attention. Thankfully, this embarrassment to the medical profession was shitcanned.
🏆 Winners of the week: the neighbors in the Hollywood Hills area who acted quickly to put out embers on a tall palm tree to save the home of a family who had already evacuated. The mutual aid and heroism being displayed in Southern California has been heartening, especially in this time (and country) where callousness has become socially acceptable.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. No pics this week, but enjoy this beautifully written essay by Kimberly Warner on the unexpected lessons of a community coming together to rescue feral cats.
The link roundup is honestly amazing. Thank you for doing so much work to collect such great info!
Thanks for the shout out! I love your posts.