The Debt Came Due

Notes From a Crash

There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first. I drive to work. I talk to people. I solve problems. I go home. I am tired in the way ordinary people are tired, the kind of tired that a night’s sleep fixes.

That life is gone.

What replaced it has a name. Long COVID. ME/CFS. Post-exertional malaise. The clinical language is clean and distant, which is probably why it fails so completely to describe what it actually feels like to live inside this body right now.

Here is what it feels like: I am in a crash.

What a Crash Is

People who don’t have this illness hear the word “crash” and picture something dramatic. A sudden collapse. A trip to the emergency room. Sirens.

A crash is not that. A crash is slower and more total.

Post-exertional malaise is the medical term for what happens when someone with ME/CFS or Long COVID exceeds their energy envelope. The body doesn’t just get tired. It breaks down. It stops regulating itself. And unlike ordinary fatigue, which responds to rest, PEM doesn’t resolve with sleep. It compounds. Every small expenditure of energy, whether physical, cognitive, or emotional, costs more than it would in a healthy person, and the debt accumulates in a way that rest can only partially address.

In February, I pushed through consecutive shifts at work. Three shifts. People who have never been sick in this particular way read that and think: that doesn’t sound like much. That is precisely the problem. For my body, it was catastrophic.

The bill came due at the end of February. It always does.

Now I cannot stay upright. The fatigue is a physical weight, not a feeling of sleepiness but something more like gravity has been turned up and my body is the only thing that hasn’t gotten the memo. Screens worsen my symptoms. Sound is exhausting. Thinking is exhausting. Being upright is exhausting. I lie flat and stare at the ceiling, which has become a kind of companion these past weeks.

The pain is there too, woven through everything. It doesn’t announce itself the same way twice. Sometimes it arrives as something sharp and shooting, a sudden bolt through a muscle or a joint that takes the breath out of me. Other times it settles in as something entirely present, not localized anywhere specific but existing everywhere at once, ambient and inescapable, like the room itself is applying pressure. On bad days both versions show up together and they compound the fatigue until the two are inseparable, a dense fog I cannot see through or past.

The House Has Changed

My doctor and I had a telemedicine call. She said the things that a doctor says when they have decided that honesty matters more than comfort right now.

Three months off, at minimum. Move to the first floor. Minimize every exertion. She mentioned a potty chair. Let that land for a moment. A potty chair, so I don’t have to walk the ten feet to the bathroom.

I have a bathroom that close and my doctor was genuinely concerned about the exertion cost of reaching it. That is where I am.

I’ve moved to the first floor. The upstairs where I used to sleep, where I used to have a life that spread itself across multiple rooms, is now effectively another country. I don’t go there. The energy cost of stairs is a luxury I cannot afford. My world has compressed to the dimensions of a single level of a house, and within that level, primarily to the bed.

Beth is here. Geno and Genie are here, the cats doing what cats do, which is be present in the unrequested but essential way that animals are present. Beth is already stretched thin in ways that compound the guilt I carry about all of this, because I know what my needing this level of care costs her. She doesn’t say it that way. But I know.

I have thought about what it means to need this kind of help. I spent nearly a decade working with vulnerable people, with abused children who had no agency over their circumstances. I have spent twenty years helping customers, managing teams, being the person others leaned on. Being needed was never something I had to think about. It was just who I was.

Now I need to lean on Beth. Daily. Practically. For things I used to do without a second thought. And as much as she gives that support without complaint, the difficulty is mine to carry. No amount of professional training, no years of helping others navigate hard moments, prepares you for the experience of becoming the person who needs carrying. The knowledge that this is not my fault does not make the feeling of it any less.

Work, and What Comes After

I have worked for over twenty years in high-volume retail. Built something over that time. A career, a reputation, a contribution. I was good at my job. I led teams. I cared about the people I worked with and the customers we served. I believed in what I was doing.

When Long COVID took hold, I didn’t want to stop. I tried everything reasonable: accommodation requests, modified schedules, reduced hours. When those doors closed, I kept going part-time, trying to hold onto healthcare coverage for Beth and myself, trying to maintain some thread of normalcy, some proof that I was still the person who could contribute. The body has now made the decision I kept resisting making for myself.

I am on medical leave. My doctor recommended three months at minimum. What I received was approval for sixty days.

Not ninety. Sixty.

My doctor’s medical judgment, the number she arrived at after examining my condition and my history and the severity of this crash, was three months. The system looked at that recommendation and gave me two. The gap between what I medically need and what has been approved is not academic. It is a source of active stress sitting on top of an already compromised system, a countdown clock running in the background while I am supposed to be resting. The administrative machinery of illness does not pause to let you recover. It keeps demanding things from you precisely when you have the least to give.

The long-term effects on my employment are real and they scare me. I find purpose in helping others. It is the through-line of my entire professional life, from child protective work to retail management. The idea that this illness could permanently alter my ability to do that kind of work, to be present, to contribute, to matter in a room full of people who need something I can provide, is a grief I carry around like a stone in my chest.

My doctor has suggested filing for SSDI. That is not a small thing. It is a formal acknowledgment that something has broken in a way that cannot be quickly fixed, and that the systems designed for people in exactly my position are now the systems I need to seriously consider. I understand this intellectually. Feeling it is a different thing entirely.

Long COVID Awareness Day, and What I Couldn’t Do

March 15 is Long COVID Awareness Day.

The people in my community, the writers and advocates and researchers and patients who are spending their limited energy trying to make the invisible visible, spent that day creating and sharing and speaking. The essays were beautiful. The urgency was real. The goal is simple in concept and staggering in practice: make the world understand that this is not laziness, not anxiety, not deconditioning, not weakness of character. Make the world understand that millions of people are living compressed lives inside broken bodies and that the research and the resources and the basic human recognition of this illness’s reality are still desperately insufficient.

I wanted to be part of that. I have always tried to be part of that.

I was in bed. Screens were making my symptoms worse. Staying upright was not possible. The writing I would have done, the posts I would have shared, the community I would have engaged, all of it was behind a wall I could not climb over.

There is a particular cruelty in being too sick from a disease to advocate for awareness of that disease on the day set aside for exactly that purpose. I am aware of the irony. I am less able to find dark humor in it than I usually can.

Others in this community were in their own beds on that day, staring at their own ceilings, making the same calculation about whether the cost of engaging was one their bodies could cover. The isolation of this illness is not a shared room. It is a collection of separate rooms, each person locked inside their own version of the same four walls, aware that others are out there but unable to reach them. We are not alone together in the way that phrase is supposed to comfort. We are alone in parallel.

The Depression Is Real

I want to be honest about this because the people who read what I write deserve honesty more than they deserve a tidy narrative about resilience.

I am depressed.

Not in the casual usage of the word, not “I feel kind of down.” In the clinical sense, in the way that grief compounds illness compounds isolation compounds loss of identity until the weight of all of it stops feeling like weather and starts feeling like the weather is all there is.

I have a psychology background. I spent nearly a decade providing support to some of the most vulnerable people imaginable. I have given the advice I now need to take more times than I can count. I have also been on the receiving end of it. I have been in therapy multiple times over the years, doing the work, building the tools. My most recent therapist and I wrapped up in early September because we agreed, together, that I had what I needed to navigate what was coming.

What was coming turned out to be this.

Knowing the framework does not exempt you from the experience. Having the tools does not mean the weight disappears. It means you have slightly better ways of carrying it, on the days when carrying is possible. Understanding cognitively that what you’re feeling is a predictable response to an objectively devastating set of circumstances does not make the feeling less real or less heavy. I know that. I have known it professionally and now I know it personally, in a way that no amount of training fully prepares you for.

The isolation is a specific kind of pain. People see me and I look like myself. I sound like myself. So they expect myself. And when I tell them what I am actually experiencing, the look on their faces, the polite nod, the careful pivot to a different subject, communicates everything about the gap between what I can describe and what they can absorb. I have tried to close that gap with writing. The writing reaches others in the community, which is one of the few sources of meaning available to me in this bed. But closing the gap with the people in my physical life, the ones who love me and mean well and still cannot quite hold the reality of this illness, remains one of the loneliest parts of all of it.

Beth is here. The cats are here. I am not alone in the literal sense. But the self that I used to bring to the world, the one that moved through rooms and helped people and contributed and connected, is not here right now. And I miss him.

What the Future Looks Like

This is the question I carry with me every night.

Will I get better? Will I get worse? Will I find my way back to something resembling the life I had before, or is this, in some form, the life I live now?

The honest answer, the one my doctor gives me and the one the research supports, is that there is no guarantee in either direction. Some people with Long COVID improve over time, gradually, unevenly, with setbacks. Some people plateau. Some people deteriorate. The factors that predict which trajectory a given person will follow are not well enough understood to give anyone a confident answer, and anyone who tells you otherwise is offering comfort instead of truth.

What is likely true is that the energy levels I had before COVID are not coming back in the form I remember them. The research on ME/CFS recovery is sobering. Full return to pre-illness function is rare. Meaningful improvement is possible and worth working toward. But the ceiling may be lower than I would choose.

What my doctor said rings in my head: any energy expenditure could result in falling into a hole I can’t get out of. She wasn’t being dramatic. The ME/CFS community has names for severe, permanent deterioration. Severe ME. Malignant ME. The language differs but the reality is the same: a deterioration that doesn’t reverse, that leaves people bedbound and dependent and unable to tolerate light or sound, that closes doors permanently rather than temporarily. It happens to people who push too hard, who refuse to accept the new parameters of their body’s tolerance, who keep trying to spend energy they don’t have until the system fails in a way that doesn’t recover. I have been that person. I have been the one pushing through shifts, driving an hour to work, believing that I could outwork the illness if I just tried hard enough.

That belief almost broke me.

So the future I am trying to build is one I don’t entirely want, but that I am trying to accept. A future with lower ceilings. A future where rest is not optional and is not a failure. A future where contribution looks different, maybe written, maybe remote, maybe smaller in scope and larger in intention. A future where my measure of a good day is not what I accomplished but what I protected.

The New Normal, and the Acceptance That Doesn’t Come Clean

I have read everything they say about acceptance. I have said most of it myself to other people over the years. And I want to tell you, with the authority of someone living it right now, that acceptance is not a destination you arrive at and then stay.

It is a practice. And grief is not a linear path.

I have said that to people in pain for thirty-five years. I believed it when I said it. I still believe it now, which does not make it easier to live. The waves of grief do not diminish because you understand their pattern. They still arrive. Some are manageable. Some knock you flat in a way that has nothing to do with ME/CFS and everything to do with loss.

I grieve my old life. I know that grief is appropriate and necessary. I know that you cannot move through it by refusing to feel it, that the only direction is forward and forward only comes by going through. And still the grief ambushes me. Still it catches me in quiet moments, when I would have been driving to work or walking to a meeting or just standing in a room being a person with a functioning body, and I feel the absence of that life like a physical thing.

The depression and the acceptance are not opposites. They coexist. Some days I navigate the waves and find something solid underneath. Some days the wave wins. I am learning to count both kinds of days as part of the same journey, not as evidence that I am failing at recovery but as evidence that recovery, whatever it looks like for me, is not a straight line either.

I write because writing is one of the few things this illness has not fully taken from me. But I want to tell you what writing this particular piece actually cost, because it is its own illustration of everything above.

I started this essay after pushing through that first shift in early February, already in PEM, already feeling the debt beginning to accumulate before I understood how total the reckoning would be. I did not know then how bad it would get. I wrote a few sentences and stopped because I had to.

What followed was six weeks of this. Not six weeks of sitting at a desk. Six weeks of waking in the night because the pain made sleep impossible, picking up my phone, turning the brightness to zero, and dictating into my notes app with Siri because even holding a thought long enough to type it was sometimes more than my hands could manage. A paragraph here. A sentence there. Rest. Start again.

This essay is the debt made visible. Every section cost something. The bill for writing it came due the same way every other bill comes due: quietly, incrementally, and then all at once.

I write it anyway, because somewhere out there someone is lying in their own bed, in their own crash, looking at their own ceiling, carrying their own version of this weight. They deserve to know the grief is real and the waves are normal and moving through them, however slowly, however imperfectly, is still moving.

That has to be enough for now. On most days, it is.

On the other days, I wait for it to be enough again.

Fred Rossi lives with Long COVID and ME/CFS. He writes at Center Left, where his Economics of Survival series explores what it means to rebuild a life within the constraints of energy-limiting chronic illness.