Fred Rossi - Writings related to ME/CFS

There is a specific grief that arrives in medical settings, and it deserves its own accounting.

You go in with hope. Or the memory of hope. With a set of symptoms that are real and documented and debilitating, and with the quiet, unspoken request to be heard and believed and helped.
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And the grief of a bad medical appointment is not just disappointment. It is the grief of being a person with a real, serious, complex illness in a system that was not designed for you and frequently cannot find the language to acknowledge your reality. It is the grief of leaving an office more alone than when you entered.

When it becomes another source of loss, the isolation deepens in a way that is difficult to describe to people who have not sat in that parking lot afterward, just aimlessly staring ahead.
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There s a lot in this article that will hit home for all. It is worth a read.

"The Meaning
Finding out who you are when you cannot do most of what defined you is grief work. Real grief work. And it does not resolve on a schedule."

"The People
There is a particular loss in watching people stop asking. Because somewhere in the process of protecting yourself from disappointment, and protecting them from the complexity of your situation, a distance got built that neither of you fully chose and neither of you knows how to close."

"The cost of existing"
The grief of this is not just the constraint. It is the vigilance. The constant, exhausting calculation. The way you have to treat your own emotions as a budget line item because allowing yourself to fully feel something could trigger a physical response that puts you in bed for a week.
You grieve the ability to just feel things without doing math first."

"The Crashes
And the grief inside a crash is total. Not just grief for the activities or the people or the work. Grief for your own mind. For the version of yourself that could think and process and engage. For the conversations you cannot have. For the time passing that you are not spending the way you would choose. For the people in your life who are watching and worried and helpless and tired in their own way.
The worst grief in a crash is not being unable to move. It is being unable to be who you are."
 
So much deeper and insightful than anything professionals produce. And I do mean anything. I haven't seen anything on this or similar topics have any depth or show even superficial understanding.
 
Another article by Fred Rossi. This one is about his slow progress in tiny snippets over months with the video game The Legend of Zelda - Breath of the Wild.

But it's really about living with very severe ME/CFS, PEM, and its impact on everything.

Twelve Percent​

A year with Breath of the Wild, and what it actually costs to play a video game​

Fred Rossi's avatar
FRED ROSSI
AUG 11, 2026

I am twelve percent through The Legend of Zelda: Breath of the Wild. I started the Switch 2 Edition when the console launched. That was fourteen months ago.

[...]

From the end.
The honest accounting

The Switch 2 has not given me back gaming. It has given me back a fraction of it, on terms I can meet, and I want to be precise about the size of that fraction.

The console is heavier than the original. On bad days that matters, and on bad days I do not play at all. Handheld mode reduces the sensory cost. It does not eliminate it. There are still sessions that end after four minutes because the screen has become too much, and sessions I pay for afterward because I misjudged the line. Most weeks I do not play at all. Fourteen months. Twelve percent. That is the real number, and I am not going to dress it up.

Audible does not make me a reader again on the old terms. The Portal does not make me a PS5 player again. What all three do is lower the entry price of something I loved from an evening to five minutes. That is the whole claim. They do not restore the hours. They do not change the underlying condition. They change what a few line items cost, and they do it reliably enough that I can plan around them.

That is the pattern I keep finding. The tools that work are not the ones that promise to fix the math. They are the ones that quietly reduce one number in the equation and then get out of the way.

A note on how this was written

This essay took a year to write, more or less the same way the game took a year to play.

It did not arrive. It accumulated. Sometimes a paragraph on a good afternoon. More often a sentence or two dictated or typed with my eyes half-closed. Most often a run of unformed, unintelligible thought that sat in a note for days before it meant anything, and sometimes weeks, and in a few cases months, until it finally coalesced into something a stranger could read.

Much of it was assembled with the help of my AI partner, Claude. I draft. Claude reacts, pushes back, and helps me find the shape of what I was reaching for when I could not hold the whole thing in my head at once. That is not a shortcut. It is the same category of tool as everything else in this essay. It lowers the entry price of a thing I love from an evening to five minutes.

That is what this illness actually does, and it is the part hardest to convey. It does not take a fixed percentage off the top. It converts full days of activity into days spent in a bed, in a room, often in darkness, with the blinds down and the fan turning. And then, without much warning, it gives you a moment. Some semblance of normalcy peeks out from under the covers, and you get twenty minutes.

You do not get to schedule those moments. You only get to be ready for them. Everything I have described here, the console, the streaming screen, the audiobook, the writing, is an attempt to have something worth doing already loaded and waiting when one arrives.

This essay is what a year of those moments looks like, stacked end to end.
I am twelve percent through Breath of the Wild.

I intend to finish it.

___________________________

This is part of The Economics of Survival, a series about living with Long COVID and ME/CFS in the language of budgets, debt, and scarcity. If this is your first one, the companion piece is The Tools That Fit. I don’t write inspiration. I write the math.
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Trish said:
Another article by Fred Rossi. This one is about his slow progress in tiny snippets over months with the video game The Legend of Zelda - Breath of the Wild.

But it's really about living with very severe ME/CFS, PEM, and its impact on everything.

Twelve Percent​

A year with Breath of the Wild, and what it actually costs to play a video game​

Fred Rossi's avatar's avatar
FRED ROSSI
AUG 11, 2026

I am twelve percent through The Legend of Zelda: Breath of the Wild. I started the Switch 2 Edition when the console launched. That was fourteen months ago.

[...]

From the end.
Click to expand...
I related to so much of this. I wish I could write about this illness half as well as Fred.
 
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