Fred Rossi
@darthfoo.bsky.social
I write about shrinking reserves from #LongCOVID and #MECFS with brutal honesty and zero fluff. Also: Star Wars, comics, cats, and Penguins goals. 🚨 #LetsGoPens #PwME https://darthfoo.substack.com
I’ve been re-reading what I wrote back in October, the essay where I laid out how this works. Full-time to demotion to part-time to eventual departure when even part-time becomes unsustainable. #LongCOVID #MECFS #PwME #ChronicIllness #Disability #Grief #Work darthfoo.substack.com/p/when-showi...
When Showing Up Is Not Enough
Why Employers Must Learn the Economics of Chronic Illness
darthfoo.substack.com
We had to say goodbye to Genie today. We helped end her suffering at 4:03pm. I’ll be away for a while. We loved you every day, Genie; your suffering ended today, sweet girl; ours begins. Hug your fur babies tight.
@mattreevesla.bsky.social That camera test today was exactly the kind of crumb that keeps us going. February 2028 feels a lot more bearable with little glimpses like that. Please keep them coming, they mean the world to us. 🙏🙏🙏 #TheBatman #TheBatman2
Long day at Hopkins yesterday. 2 hours each way, and #Tesla FSD carried the drive so we didn't have to burn energy I don't have. Today I'm paying for it anyway. That's the math of chronic illness: even the wins cost something. #LongCovid #MECFS #ChronicIllness #FSD
OpenAI launches GPT-Live, a new generation of voice models built on a full-duplex architecture, meaning they can listen and speak at the same time (OpenAI) Main Link | Techmeme Permalink
Will I ever be able to do anything of substance again? That question sits on my chest like a weight. Not rhetorical. Just the math of a life measured in what I don’t have. I don’t know. I’m still here asking. #LongCOVID #MECFS #ChronicIllness #Spoonie #PwME
Woke up feeling ok. Sorted & took out the recycling, brought in the trash can, sorted the mail. Four small tasks. That's the whole list. With #LongCOVID & #MECFS, "feeling ok" kills tomorrow's energy today. This is what invisible illness actually costs. #PostExertionalMalaise #ChronicIllness #PwME
I’ve counted what #LongCOVID & #MECFS has taken. This counts the other column. The hour with my wife. A reader who gets the joke. A memory I can hold in an empty house. Not a recovery story. Just the light, counted at the same scale as the loss. #PwME darthfoo.substack.com/p/the-small-...
The Small Things, Counted
I have written a lot about what this disease subtracts.
darthfoo.substack.com
I’ve counted what #LongCOVID & #MECFS has taken. This counts the other column. The hour with my wife. A reader who gets the joke. A memory I can hold in an empty house. Not a recovery story. Just the light, counted at the same scale as the loss. #PwME darthfoo.substack.com/p/the-small-...
The Small Things, Counted
I have written a lot about what this disease subtracts.
darthfoo.substack.com
The piece and the dialogue around it have taken a lot out of me. I’ve genuinely appreciated every thoughtful response. I may be slow to reply for a bit while I rest. Thank you all. #MECFS #LongCovid #PEM #PwME darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
The piece and the dialogue around it have taken a lot out of me. I’ve genuinely appreciated every thoughtful response. I may be slow to reply for a bit while I rest. Thank you all. #MECFS #LongCovid #PEM #PwME darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
For years I was told the way out of this illness was effort. Push through. Build up. Don’t give in. Here’s where that led: “The danger now is not trying too little. It is having tried too hard, for too long, on the theory that effort was the cure.” darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
This explains A LOT. Levinovitz's new book is called 'Demons by another name: Biology, belief & stories make us sick.' It is clear that brain retaining fits the argument that he is making: that what was deemed as demons are still making us sick & the mind can miracle cure 1/8
They call us obstacles to progress. I’m enrolled in the research. My response to WIRED’s “The Painful Truth About Long Covid.” darthfoo.substack.com/p/the-patien... #LongCOVID #MECFS #Wired #PEM #CBT #GET
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
Nearly 4AM. The muscle, joint and nerve pain is making sleep impossible. This is life with #LongCOVID and #MECFS. #PwME
This was my reality before FSD. From my new essay, The Tools That Fit. “There were shifts where I slept in the car afterward. Not because I wanted to. Because I had to.” #LongCOVID #MECFS #PwME #ChronicIllness #Tesla darthfoo.substack.com/p/the-tools-...
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
darthfoo.substack.com
Incremental gains are core to being a #pwME &/or a #pwLC Every tiny bit of energy, friction, sludge I shave off can decide if I have the energy to enjoy my tiny life or am just surviving. For me it’s things like coffee left for me in a travel mug, HUE lights, the Visible app, & an ecobee thermostat.
Fred Rossi@darthfoo.bsky.social · 2mo agoNot a cure. Just better calibrated survival. I wrote about why the tools that fit are worth naming: darthfoo.substack.com/p/the-tools-... #LongCOVID #MECFS #PwME #Technology #Tesla #TeslaFSD #ChronicIllness #Disabilities #InvisibleIllness
Saw #TheMandalorian and #Grogu today. A lot of fun, & a real celebration of every era of #StarWars. Original Trilogy, Prequels, Clone Wars, Sequels, & of course Mando and Grogu fans all get something. Wanted it to push the story forward more, but it’s a wonderful entry point.
Tesla Full Self Driving (FSD) wasn't built for #LongCOVID or #MECFS. The Visible band was. For someone managing energy-limiting illness, both quietly changed the math of my daily life. darthfoo.substack.com/p/the-tools-... #PwME #Technology #TeslaFSD #ChronicIllness #Disabilities #InvisibleIllness
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
darthfoo.substack.com
New essay is up. This one is about the #technology that changed the math. “Neither of these is a fix. But both of them fit.” #LongCOVID #MECFS #ChronicIllness #PwME darthfoo.substack.com/p/the-tools-...
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
darthfoo.substack.com
Today is a hard one. Struggling more than usual. Still sending good thoughts to everyone out there. Be well. #LongCOVID #MECFS #PwME #ChronicIllness youtu.be/i1mosSw4Hh4?...
Glen Phillips "Grief and Praise" (Official Lyric Video)
YouTube video by Glen Phillips
youtu.be
Heartbreaking news about #ClaudeLemieux. You never know what someone is carrying. Check on the people you love. If you’re struggling, call or text 988. www.tmz.com/2026/05/28/c... #Empathy #Kindness
Claude Lemieux Died By Suicide
Claude Lemieux, 4x Stanley Cup-winning NHL player, died by suicide, TMZ Sports has learned.
tmz.com
#LongCOVID #MECFS #PwME #PEM #Pacing #StarWars #Grief substack.com/@darthfoo/no...
Fred Rossi (@darthfoo)
Still Here It has been a while, and I want to fix that. I’ve been up in the night more than I’d like. Pain has a way of stealing sleep and then, paradoxically, giving you quiet hours where the only ...
substack.com
Invisible Weight, Lyrics: Fred Rossi “I wake with the sun but I don’t feel awake. Every step I take feels like a small mistake The world keeps moving, I just stand still In this quiet battle no one thinks is real.” #MECFS #LongCOVID #PwME #InvisibleIllness darthfoo.substack.com/p/invisible-...
Invisible Weight
Yesterday was rough.
darthfoo.substack.com
