Fred Rossi

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

533 followers1.2K following519 posts

Fred Rossi
@darthfoo.bsky.social

“It used to be energy. Now it is the memory of energy.” I used to walk six miles to manage grief. Chronic illness took that away. Then I lost Genie. My new essay is about grief, music, and losing the ways we once coped. darthfoo.substack.com/p/the-memory... #MECFS #LongCOVID #Grief

darthfoo.substack.comThe Economics of Survival | Fred Rossi | SubstackLiving with Long COVID and ME/CFS means every decision runs through a cost-benefit analysis you never asked for. This publication applies that framework to chronic illness, disability, politics, and c...
Fred Rossi
@darthfoo.bsky.social

I'm missing Genie a lot today. It's #fall, my favorite season, and I can't get out in #nature or #hike the way I used to. I've been going through old #photos. They make me smile and cry at the same time. substack.com/@darthfoo/no... #LongCOVID #MECFS #Disabled #Sad

substack.comFred Rossi (@darthfoo)I'm missing Genie a lot today. It's fall, my favorite season, and I can't get out in nature or hike the way I used to. I've been going through old photos. They make me smile and cry at the same time.
Fred Rossi
@darthfoo.bsky.social

I started writing the lyrics for this song on July 24, 2026. It was just 48 hours after we had to say goodbye to Genie. The pain was still raw. I felt lost. I didn’t really know what I wanted to say. I just knew I needed to write something. #LongCOVID #MECFS #Grief #ChronicIllness #Cats

Fred Rossi
@darthfoo.bsky.social

Yesterday I went to a friend’s memorial. Today I’m paying for it physically, cognitively and emotionally. I’m in #PEM now. Repeated crashes can mean longer recovery and a lower baseline. Sometimes you spend energy you don’t have because something matters. Yesterday mattered. #MECFS #LongCOVID

Fred Rossi
@darthfoo.bsky.social

It’s nearly 5 a.m. I haven’t slept. The pain won’t let me. I’m trying to write, but the pain makes it hard to even think. Words that should come easily just don’t. This is life with Long COVID and ME/CFS. Even lying still in the dark can cost more than you have. #LongCOVID #MECFS #ChronicIllness

Fred Rossi
@darthfoo.bsky.social

Today has been hard. The pain is relentless, and my muscles feel like they simply don’t have anything left to give. Standing hurts. Moving hurts. Existing in my body hurts. Long COVID and ME/CFS can reduce an entire day to simply enduring it. #LongCOVID #MECFS #PwME

Fred Rossi
@darthfoo.bsky.social

Visible said I woke up a few points better. Then three to four hours on the phone with our health coverage. Flat on my back, AirPods in, eyes closed. There goes the day’s energy budget. More calls tomorrow, and I need to shower. 🤦‍♂️ This is life with #LongCOVID and #MECFS.

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Fred Rossi
@darthfoo.bsky.social

Not the argument for accommodation, which I already made and which employers remain free to ignore. The accounting of what it costs when they do. It is coming, but slowly. I’m in a crash, and July has been a hard month, so the writing is happening a sentence at a time.

Fred Rossi
@darthfoo.bsky.social

Most of it by voice now, which is working better in the iOS 27 beta if anyone else is dictating their way through a bad stretch. I’ll finish it. Grieving Genie takes more cognitive & emotional bandwidth than I have to spare right now, so it’s one day at a time. Thanks for hanging in there with me.

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Fred Rossi
@darthfoo.bsky.social

I wrote it as a warning. I thought describing the pattern clearly enough might slow it down. It did not slow down. There is nothing satisfying about being right when the thing you predicted was your own removal.

Fred Rossi
@darthfoo.bsky.social

The trajectory I described from inside it went where I said it would go, on roughly the schedule I said it would take, because nobody involved had any reason to stop it. The next essay is the part I could not write in October.

Fred Rossi
@darthfoo.bsky.social

I called it a slow-motion exit strategy. Then I ended it by saying I was still there, compression socks on, still working my two days, still hoping understanding would arrive before the next ultimatum did.

Fred Rossi
@darthfoo.bsky.social

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.

Fred Rossi
@darthfoo.bsky.social

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

Fred Rossi
@darthfoo.bsky.social

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

Fred Rossi
@darthfoo.bsky.social

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

Fred Rossi
@darthfoo.bsky.social

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...

darthfoo.substack.comThe Patient Who Isn’t Supposed to ExistI taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
Fred Rossi
@darthfoo.bsky.social

My response to WIRED’s piece on Long COVID, from someone who taught CBT techniques before the disease made him a patient. #LongCovid #MECFS #PwME #PostExertionalMalaise #PEM #ChronicIllness #DisabilityRights #pwLC

Fred Rossi reposted

Long Covid Advocacy
@longcovidadvoc.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

Fred Rossi reposted

Belasco
@belasco.bsky.social

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

Not 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

darthfoo.substack.comThe Tools That FitTechnology Didn’t Cure Me. It Just Improved the Math.
Fred Rossi
@darthfoo.bsky.social

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.

Fred Rossi
@darthfoo.bsky.social

The Mandalorian and Grogu opens this week. I won’t be there opening day. That breaks a streak going back to Return of the Jedi in 1983. Over forty years of first-day Star Wars. Small loss. Still real. Grogu will wait. #StarWars #PwME