What Began as a Memoir Became a Movement
I didn’t set out to start a movement, I set out to survive. To make sense of what was happening to my body, to reclaim my story after being ignored, dismissed, and misdiagnosed. I began writing as a form of self-preservation, but as the pages filled, I realized I wasn’t alone. My story echoed thousands of others unseen, unheard, and unaccounted for. This is not just my journey. It’s the opening chapter in a collective reckoning.
CHAPTER ONE: Before the Storm
Rebirth on the Upper West Side
New York City, 2019- There was a rhythm to it. Not just the city, but the tempo of my life. By early 2020, I had found something few people ever feel confident saying aloud: momentum. The kind you can feel in your blood. After a series of difficult chapters marked by loss, breakup, and reinvention, I was finally riding the upward slope.
I was living in an apartment on Central Park West, nestled in the kind of neighborhood that still carried the echo of old New York. Most mornings, I would bike through Central Park like it was mine. The air in March was just starting to shift. The days were stretching out like a canvas being pulled wide, and for once, I wasn’t rushing to catch up with time. I was ahead of it.
School had become more than just a goal. It was my runway. I was knocking out degrees at a speed that startled even me; one class, one milestone at a time. I had a system, a rhythm, and most importantly, a reason. There was a drive in me that no longer needed to be stoked. I was burning on my own.
What made it more profound was where I’d been. Two years prior, I thought I had hit rock bottom. But in hindsight, that was just a bend in the road. This life of bike rides, study marathons, and feeling my legs come back underneath me; this was the real comeback. I had bounced back, bounced back better than I ever thought possible.
I wasn’t cocky. I wasn’t invincible. But I was certain of one thing:
I was moving on. I was driving the bus.
And up until that point, I had never really needed to navigate the medical system. I mean sure, a few stitches here or there, maybe a bad flu in winter. But the concept of being truly sick? That belonged to other people. People who carried inhalers, or wore wristbands at hospitals. I was healthy. Strong. Resilient. And in my mind, invisible illness was just that; invisible, and far-fetched. It lived in cautionary tales and documentaries, not in people like me.
And then, just as I was hitting full stride, something else began to ripple. At first, it was just a murmur. Something about a virus in a city I couldn’t pronounce on the other side of the world. Wuhan. Even the name felt distant. I remember thinking, "That’ll never reach here." But within weeks, that whisper turned into background noise. And then into headlines.
Trader Joe’s started putting up signs. People were elbow-bumping instead of shaking hands. On the subway, one or two riders would be wearing masks, and everyone else would stare like they were puppets. Who knew, that in a matter of days people would look to them like they were prophets?
Then came the Tom Hanks moment. You know the one. "Tom Hanks has tested positive for COVID-19." If America had a collective big brother, it was him. That was the day people stopped laughing.
On March 10, 2020, I was watching the live feed on my MacBook:
The Allman Brothers 50th Anniversary Tribute at Madison Square Garden. There were whispers in the air, silent whispers to them. They all just wanted one more night of music, of being together, of pretending it wasn’t already here.
And within days, the city folded in on itself.
The breeze had become a wind. Then a gust. And then a tsunami. One that would carry me; body, mind, and soul into places I never imagined. One that would reveal not just what a virus could do, but what a broken system would allow it to become.
The life I was living, the one I fought tooth and nail to rebuild, would soon be dismantled one unexplained symptom at a time.
But for now, there was still sun on my back, and the rumble of subway trains underfoot. The storm hadn’t hit yet.
But I could feel the pressure change.
CHAPTER TWO: When the Storm Hit
Section I: A Whisper Turns into a Roar It wasn’t gradual. It was overnight.
March 9th: You saw someone wearing latex gloves and thought, “Okay, they’re paranoid.” Next day: You saw someone not wearing gloves and thought, “Okay, they’re reckless.”
It was like watching society go from carefree to full-blown apocalyptic in real time.
The hand sanitizer that used to sit unloved in drugstore clearance bins suddenly became more precious than gold. Toilet paper? A status symbol. Clorox wipes? Mythical.
March 10th, 2020, was just another Tuesday; except it wasn’t. I was still attending my courses in a classroom setting. The night before I watched the Allman Brothers 50th Anniversary tribute in real-time on my laptop. Fans swaying shoulder to shoulder in a packed Madison Square Garden. Just one last night of normalcy. But even then, the subway ride home had a strange hum to it. A hush. Eyes darting. Hands hesitant. Masks weren’t normal yet, but a few were beginning to appear; ghosts of things to come. Some people smirked at them. I wasn’t one of them.
That’s all it took, 24 hours. Tuesday, they were all packed together singing Statesboro Blues. The next night they were all watching nationwide news. Tuesday they were packed in an arena room, the very next night they were speaking on Zoom.
By March 11th, everything shifted. That was the day the World Health Organization officially declared COVID-19 a global pandemic. That same night, the NBA suspended its season after a player tested positive. In a matter of hours, the entire world began folding in.
By March 12th, the stock market had plunged into freefall; what would later be called "Black Thursday." Tom Hanks was in quarantine. Broadway went dark. The National Hockey League paused its season. Universities began announcing closures. The city wasn’t humming anymore. It was holding its breath.
By March 13th, a national emergency was declared in the United States. And by March 14th, New York City had entered full-blown panic mode.
Section II: The Air Changed
You could feel it in the elevator. In the hallway. Even in the lobby of my building on Central Park West. Neighbors began avoiding each other’s eyes, pressing buttons with knuckles, retreating when someone coughed. A week prior, it would’ve been laughable. Now it was protocol.
People weren’t just buying toilet paper. They were stockpiling rice, canned beans, rubbing alcohol, gloves, and pasta. And good luck finding any disinfectant wipes; they were gone. So were thermometers. And masks? Only if you knew a guy.
I began proactively wiping down my mailbox handle. The doorknob. The elevator button. The inner and outer lobby doors. It felt silly at first, but I did it anyway. No one else was doing it, at least not yet. But within days, they all followed. Not with nods of approval, but with the look of someone who had no other choice but to do so.
The irony was, I wasn’t afraid. Not yet. I was prepared. Focused. Maybe even more organized than ever. I had no idea what was coming, but I knew something was.
Outside, the city looked the same but it wasn't. You could feel it.
The birds chirped just the same, but their songs sounded
misplaced. The honking wasn’t celebratory or impatient. It was absent. The pulse of the city, the walking, the bustling, the laughing, the arguing had been reduced to silence.
Section III: The Edge of the Cliff
We all remember the eerie quiet that followed. The shuttered storefronts. The ambulances that never seemed to stop. The way time seemed to melt and stretch.
And yet, in those days, there was still a belief however naive, that this might be temporary. A few weeks, maybe. Just long enough to ride it out. Nobody knew yet what was about to be unearthed.
Not just about the virus. But about the country. About medicine. About human frailty. About who gets heard. Who gets documented. Who gets left behind.
I wasn’t sick yet.
But something told me I was already on the edge of a cliff.
And when I looked around, no one seemed to see it coming.
Not yet.
Not until the wind picked up.
CHAPTER THREE: The Descent Begins
Section I: A Different Kind of Sick
The first sign wasn’t dramatic. It wasn’t a cough that sent me to the floor, or a fever that broke 103. It was subtle. Creeping. Not a slight pressure in my chest when I climbed stairs. Not even a dry throat in the mornings. Never once was there a heaviness in my legs during a walk that shouldn’t have tired me.
So, I didn’t panic. Not exactly.
After all, the city was already in full panic mode. Everyone had something; sniffles, fatigue, a little brain fog. I knew I felt off, it just seemed like everyone did. It was the season of self-diagnosing.
Was it stress? Was it the isolation? Was it too much screen time?
Or was it… that?
But here’s the thing: I believed I had dodged it. That my hypervigilance had paid off. I was so preoccupied with keeping the invisible enemy out that I didn’t stop to consider that it might already be inside. Doing its work. Slowly chipping away.
Anything I did feel, I chalked up to routine changes, anxiety, or pandemic fatigue. I disinfected my lobby doorknobs like it was religion. I avoided every human interaction possible. I was a sentinel at my own gates. And for most of 2020, I genuinely thought I had succeeded.
It wasn’t until this high-pitched ringing began that I started investigating.
First, I checked every wall. Then each appliance. I shut down circuit breakers one by one, trying to identify the source. Eventually I decided it must be my phone. Until one night, that theory collapsed.
I left my phone at home for a quick run to the local market. It was late. The streets were quiet. Just a few feet from Central Park West, the sound crept in again, the same high-pitched frequency I’d been chasing for months. Only now it was outside. I froze.
It was the first time I heard it away from everything else. Away from my apartment. Away from electronics. It was distinct.
Internal. And in that moment, I realized the truth.
Like the final frame of a cliffhanger series, I felt my eyes widen, the world around me drop out of focus, and the answer to the question I had been asking for months, “Where is it coming from?” suddenly set in.
“Holy crap, it’s coming from me!”
Section II: A Life Becoming Unrecognizable
I stopped biking. Not because I wanted to, but because I couldn’t. The very act that used to make me feel free now felt like dragging a sack of bricks through molasses.
Concentration, which had become my superpower, my ability to blaze through coursework, tear through long-form writing, read three textbooks a week was gone. Not weakened, it was gone. I would re-read the same paragraph five times and still not understand what I was looking at. Something was wrong.
Something was changing.
And I wasn’t the only one saying this.
Online, others were describing the same constellation of symptoms. Tingling limbs. Pressure headaches. Shortness of breath. Palpitations. But no hospital would take us seriously. Most of us never even got an official diagnosis. Some were told it was anxiety. Others, that it was dehydration. Or worse, attention seeking.
The city was still reeling from its initial surge. Refrigerator trucks lined up outside of hospitals. Sirens that never stopped. Medical staff that looked like soldiers in a war zone. So how could I walk in and say, “I think something’s wrong with me... but I don’t have a fever”? Besides, I still chalked it all up to "the chaos of disruption" not to mention, hospitals at the time very much felt like a place where people go to die.
Section III: Vanishing Into the Fog
Somewhere in August of 2020, the boundaries between days started to blur. Sleep was either non-existent or endless. I was exhausted and wired. Wired and foggy. The noise in my head grew louder. Tinnitus? Anxiety? Something new?
I lost track of the hours. I forgot appointments. I stopped calling people back. I isolated not out of fear of infection, but because I was ashamed of not having an explanation. I was disappearing.
And worse? I couldn’t prove it.
There was nothing on paper. No positive test. No record of symptoms. No “evidence” that what was happening to me was real.
I was a healthy guy. A fighter. I had clawed my way back from worse before.
But I had never faced this. A sickness that didn’t show up on scans. That left no lab markers. That made you question your own sanity while simultaneously ravaging your body. The descent had begun.
And I was still being told, “You’re probably just stressed.”
CHAPTER FOUR: The Stillness of Collapse
Section I: Still Standing While the World Fell
The world felt like it had frozen in place, but not me. I was moving, barely. Floating through sludge. I could feel the gears inside me grinding, slowing, stripping. The days had a strange quality to them, like standing still while watching everything melt around me.
New York was still losing people by the thousands, daily. It was a silent war. Sirens had become birdsong. In the early days, I marked time by Andrew Cuomo's 11:00 a.m. daily press briefings. They grounded me. In a world without structure, they became my clock.
A ritual. I clung to the calmness of those briefings like a lifeline.
Every official, even when outdoors, wore a mask. They only removed it to speak at the mic, then immediately placed it back over their face. That protocol, that visual cue, lodged in my psyche. It became my habit too. One I’ve never unlearned.
Section II: The New Normal (Wasn't Normal)
Even as the city began a slow crawl toward reopening, I didn’t. I was still broken, though I didn’t yet have the language for it. By fall of 2020, I had yet to fully understand the extent of what had changed. But it was undeniable.
Energy was rationed. Outings became measured affairs. If I walked more than a few blocks, I paid for it in days. I started taking notes on symptoms, patterns, anything that might help me crack the code. But there was no code. No baseline.
ENT doctors were impossible to get appointments with. Waitlists were months long. When I finally saw one, the verdict was... inconclusive. The ringing? Maybe a result of stress. Or allergies.
Or earwax. Or maybe nothing at all. He shrugged.
But I knew. I knew.
Something was very wrong.
Section III: 2021 – When Knowing Took Root
It wasn’t a single moment that confirmed it, rather the slow accumulation of them. The hours lost staring into space. The inability to finish sentences. The way my limbs buzzed like electricity. I was no longer wondering if something was wrong. I was now wondering how long I had before it consumed me entirely.
But still, I had no proof. No diagnosis. No tests had been run. And appointments were still scarce. COVID had flooded the system and those of us who weren’t on oxygen, weren’t prioritized.
I began to retreat deeper. The walls of my apartment, once a sanctuary, began to feel like padded cells. And yet I didn’t push harder. I didn’t sound the alarm. Not yet.
Because part of me still hoped I was wrong.
CHAPTER FIVE: The Unseen Battle
Section I: Breaking the Illusion
If 2020 was the year of confusion, 2021 was the year of reckoning.
By then, I had exhausted all reasonable explanations. There was no more blaming the stress of lockdowns or the disruption of routine. There was no more wishful thinking. I was not bouncing back. If anything, I was slipping further away from the person I used to be.
The fatigue had evolved into something more sinister. It wasn’t just tiredness. It was cellular. A sense that something inside me had been quietly reprogrammed. My muscles didn’t respond the same way. My brain short-circuited under tasks that once felt effortless. Sounds became sharper. Lights harsher. Conversations harder to follow.
I had been an academic overachiever. The type to take pride in cramming full semesters into compressed timelines, not just finishing but excelling. Now I couldn’t read through a single email without losing my place.
Section II: The First Wave of Dismissals
Getting a doctor’s appointment in 2021 was still like winning the lottery. And even when I did get seen, I was met with polite dismissal. Tests came back "normal." My vitals were fine. My appearance didn’t match my complaints. “You look great,” one physician said cheerfully, as if that were a medical outcome.
I began to see a pattern: if I could walk into the office, I must be fine. If I was articulate enough to explain my symptoms, they couldn’t be that bad. If I used medical terms, I must be exaggerating.
I tried altering my delivery; less assertive, more vulnerable. Still, no traction. I left each appointment with nothing but a growing file of generic after-visit summaries and a deeper sense of disorientation. It was as if I had entered a parallel universe where no one could see the fire I was trapped in.
Section III: No Diagnosis, No Exit
I made countless attempts to break through the fog, both the one in my head and the one blanketing the medical system. But appointment after appointment led nowhere. A rushed internal medicine doctor at a clinic on the Upper West Side shrugged off my symptoms and sent me home with a vitamin D prescription. Another at an urgent care in Midtown told me to try yoga. A neurologist I waited six months to see barely looked up from her computer as I listed off a dozen debilitating changes.
I sat through multiple EKGs, two CT scans, a brain MRI, routine bloodwork, and thyroid panels. Every test returned stamped with the same verdict: “Within normal limits.” But nothing about my daily life felt normal anymore.
Even when I explained that I had stopped biking, that I had stopped reading, that I was struggling to speak in full sentences without getting lost midway- there was no urgency in their responses. A telehealth psychiatrist told me it sounded like burnout. A nurse practitioner recommended cutting back on caffeine. I remember one ER visit where I was visibly shaking and slurring words; the attending physician ran basic labs and sent me home, telling me I “seemed anxious.”
Each encounter chipped away at something I couldn’t replace: belief. Belief that someone might take a second look. Belief that this wasn’t all in my head. Belief that medicine could help me.
Section IV: Isolation by Another Name
The tinnitus continued, always humming in the background; but it had long since become part of the scenery. What consumed me more now was the steady breakdown of function. Memory glitches, time distortions, limbs that felt foreign. On some days I’d open the refrigerator and stare blankly, unsure why I was there. On others, I’d feel a jolt of adrenaline just from walking half a block.
I stopped reaching out. Not because I didn’t want support, but because I had nothing to report. No diagnosis. No treatment plan. No answers. How many times could I say, “I’m still not better,” before even my most loyal friends began to sound exhausted?
I journaled obsessively. I documented every twitch, every skipped heartbeat, every moment of forgetfulness. I thought maybe if I could just gather enough data, someone would listen. Someone would believe me.
But no one did.
Not yet.
And so, I fought silently. An invisible war, against an invisible enemy, in a medical system that could not, or would not, see me.
The descent continued.
And I was very much alone.
CHAPTER SIX: Catching On
Section I: Static Motion
The world had resumed its rhythm. Streets bustled. Subways roared. But I was stuck in a kind of internal molasses, moving through life like a ghost tethered to gravity. While most people were adjusting to the "new normal," I was still trying to make sense of what had become my new reality; without momentum, without direction, without answers.
My body was breaking down in ways that defied logic. My neck stiffened inexplicably. My back ached persistently, as if I had aged twenty years overnight. I tried to make appointments with orthopedists, assuming these were just structural issues from months of inactivity. But those visits, too, became another rabbit hole. "You're getting older," one told me with a half-shrug. "It happens."
Not like this, I thought. Not like this. I had been cycling Central Park, lifting weights, and walking everywhere. I hadn’t been sedentary a day in my life. This wasn’t aging. This was system failure.
Section II: A Pattern Emerges
By early 2022, I was no longer just exhausted. I was offended. Every doctor I visited seemed to follow the same script: downplay, dismiss, redirect. They offered vague reassurance with nothing concrete behind it. I started to notice how quickly they brushed off my questions, how they leaned on phrases like "it's common," or worse, "it's probably just stress."
But this wasn’t stress. This was something unravelling.
I hadn’t heard the term “Long COVID” yet, but I had started to see news blurbs and journal snippets describing lingering symptoms: fatigue, brain fog, neurological issues, recurring infections. It was like reading my own diary. Slowly, I began connecting the dots.
Persistent UT Is that didn’t respond to antibiotics. Pelvic discomfort that no one could explain. Muscle twitching. Nutrient imbalances. Nerve pain. Vision changes. These weren’t unrelated issues. They were branches from the same poisoned root. And yet every doctor treated them as isolated complaints, never daring to consider the possibility that something systemic had gone awry.
One urologist told me that recurrent UT Is in men weren’t all that unusual. Another said I should try drinking more water. I asked about the persistent pelvic inflammation, was it possibly autoimmune? Viral in origin? He smiled with a kind of rehearsed patience. “We’re not seeing anything that would suggest that.”
Section III: Uncovering the Concealed
The real slap in the face came when I started digging through my own lab results, the ones marked "within normal range." I crosschecked them against published medical standards and discovered the truth: they weren’t normal at all. I had low magnesium. Low B12. Alarmingly low vitamin D. Low iron. Critically low iron saturation (6%). Sky-high RDW-CV and RDW-SD. Hemoglobin of 11. Ferritin? Unmeasured. Hematocrit below range. All classic signs of anemia. But not a single doctor mentioned it.
They didn’t just miss it. They omitted it.
Medical gaslighting isn’t always dramatic. Sometimes, it’s in the passive tone of a discharge note. Sometimes, it’s in the missing highlight on a blood panel. Sometimes, it’s in the unspoken decision not to investigate further. Like a thousand paper cuts you don’t notice until the blood runs. And over time, those little acts of negligence add up.
They add up to doubt. To loss of trust. To rage.
And then there was the immunoglobulin panel—low IgG (650), despite obvious signs of immune system dysfunction. In a sane system, that alone would warrant further investigation. In mine, it warranted nothing. It was as if every indicator had been screaming for years, and no one bothered to listen.
Section IV: Who Gets to Be Sick?
I was 47. I didn’t drink. I didn’t smoke. I exercised. I ate well. I was the picture of “doing it right.” So why was I falling apart? And more importantly, why was no one interested in finding out?
I began to realize that medicine had a template for what illness looks like. And I didn’t fit it. I wasn’t frail. I wasn’t hysterical. I wasn’t visibly sick. Therefore, in their eyes, I couldn’t be.
But I was.
They had made a mistake.
And worse, they had made a habit of it.
Section V: They Let the Numbers Lie
The day I finally sat face to face with the long-awaited rheumatologist. After half a year of waiting, of watching appointment slots evaporate before I could click. My labs were already in their system. Ordered by them. Reviewed by them. Displayed in their pristine font, each flagged value silently pleading for attention.
Low Hemoglobin. Alarming Hematocrit. Microcytic volume.
Severely depleted B6. Dangerous levels of vitamin D deficiency. Zinc, iron crashing. These weren’t trends. These were smoke signals.
I pointed at the screen, my voice steady but urgent, reciting the abnormalities as if naming them might make them real in her eyes. But instead of concern, or even curiosity, she gave me a look I’ll never forget. That practiced half-smirk of the disinterested. The upper lip disappearing behind the lower one, mouth curled down slightly. A tiny shrug. That expression professionals wear when they’ve already decided not to get involved.
And then, casually:
“No… nothing concerning.”
I blinked. Once. Twice. I almost laughed. Was she seeing someone else’s labs? I was sure the screen hadn’t changed. These were my results. My body. My blood.
It was like she had a script. A pre-programmed response for patients who dare to look at their own data and speak it out loud.
Especially when the numbers are screaming.
What made it worse? The visit summary.
“The patient looked at his lab result and is very concerned. He thinks he may have an infection.”
As if my concern itself was the problem. As if the real disorder was my access to information.
No mention of why I was concerned.
No mention of the chronic symptoms I came in to discuss. No mention of the four years of progressive deterioration I described in vivid detail.
No mention of long COVID.
Not a single word.
Just more numbers. More billing codes. More system-generated silence wrapped in a digital after-visit summary.
They weren’t just letting me fall through the cracks.
They were filling the cracks with lies and blaming me for noticing!
CHAPTER SEVEN: Neurology, or the Art of Vanishing Symptoms
By March of 2023, I was as sick as I could remember being. My body had reached some kind of uncharted depth beyond fatigue, beyond confusion, beyond desperation. This wasn’t just a new low. It was the bedrock layer, where hope and delusion scraped against each other and left only friction burns. My primary care doctor, who had already referred me to so many specialties I had begun to joke about needing a punch card; sent me for another round of bloodwork and, mercifully, a neurology referral.
Yes. Neurology. Finally.
It felt like this was going to be the one, the appointment that cracked the whole thing open. I had a twinge of fear, sure, but also a strange sense of pride. After all this time, all this denial, someone was going to look at me and see it. The neurological effects of long COVID were being whispered about in medical corners and scribbled across emerging articles. They had a category for it now.
The word was out. This would be it.
I had all the bloodwork done promptly, as instructed. Not at some random walk-in lab, but at their own facility. The orders were theirs. The execution was mine. What came back didn’t look good. Each result practically glowed, one after the next like beacons in the dark, calling out from the land of neglected truths. My abnormalities weren’t just present; they were prominent. I stared at those labs for weeks like they were letters from the other side.
Two months later, I showed up for my appointment at Mount Sinai Neurology. The irony is that the building wasn’t just familiar, it was deeply personal. My sister had been born there. I had passed it hundreds of times; each occasion etched in some way into the story of my life. And yet, when I arrived that day in June, the location barely registered.
The neurologist began with a series of questions. Simple ones, at first.
“Spell the word world backwards.” It broke me. I couldn’t do it.
I tried. Dammit, I tried.
I said the letters aloud- W, O, R, L, D, but they refused to cooperate in reverse. I couldn’t visualize them. My mind, usually quick and flexible, suddenly flatlined at the task. I tried different techniques: picturing it, writing it in the air, saying it slowly.
Nothing worked. It was as if the part of my brain responsible for that kind of mental manipulation had been scooped out and replaced with fog.
Next came physical tasks. I was asked to perform various upper body movements while standing on one leg. On my right, I did fine. On my left, I fell. Not once, but repeatedly. It wasn’t a stumble. It was a collapse. My body simply didn’t cooperate, and the message it sent was clear: something was off.
She asked where we were. I said “Mount Sinai.”
“Can you be more specific?”
“Mount Sinai, Union Square.”
She looked at me flatly. “Are you sure?”
I was… until I looked out the window. One-way traffic.
Northbound. Not Union Square. Not even close. We were on First Avenue, near 15th Street. The original Beth Israel, an anchor of my city, my childhood, my life. And I didn’t even recognize the route I had just taken to get there. The subway, the walk, the entrance; gone from memory like vapor.
And still, she offered excuses.
“That’s a difficult word to spell backwards.”
“You’ve had a lot of appointments.”
“These tests can be subjective.”
“Mount Sinai’s a big place.”
When she asked who the President was, I made a joking comment “Depends who you ask, but it’s Joe Biden” and somehow, that became the one detail she chose to write down. My balance issues, my memory lapses, my disorientation, my abnormal labs, my repeated insistence that I believed this was long COVID. None of it made it into the report. Just that I said the president question was “subjective,” presumably as a joke.
And that was it.
That was the note. The sum-total of what she walked away with. Not that I was struggling. Not that I was declining. Not that I was part of a growing wave of post-COVID patients reporting unexplained cognitive and neurological issues.
No. The joke made it in. That was the impression that counted.
That was the moment I knew, truly knew that something deeper was going on. This wasn’t about misunderstanding, or clerical error, or poor bedside manner. This was systemic. Intentional. They weren’t just dismissing me. They were airbrushing me out of the frame entirely.
And it wasn’t just me. I started reading. Other patients. Other stories. Almost identical. Word-for-word repetition. “Everything’s within range.” “You’re anxious.” “These tests aren’t reliable.” “It’s probably stress.”
No matter what the symptoms were. No matter how many tests we showed up with. No matter how many times I said “long COVID.” We weren’t being examined. We were being erased.
The Day the Numbers Turned on Me:
March 16, 2023.
The day it stopped being speculative.
The day it stopped being something “in my head.”
My primary care doctor sent me for blood tests, a battery of panels so broad it could have doubled as a crime scene sweep. I didn’t go rogue; these were their orders, their labs, their results. And yet, when the reports came back flashing with abnormalities, no one reached for the alarm. No one asked why. No one even blinked.
I stared at those panels like a detective staring at fingerprints left at a murder scene. Vitamin D almost undetectable. WBC off the charts. Urinalysis glowing like a warning flare. Smith antibodies, centromere B, and other markers peppering the pages. Each number a breadcrumb to something systemic, something serious.
I didn’t have to “Google” my way into paranoia; the evidence was right there, stamped with their own names, their own labs.
And still, they shrugged.
I had done everything right. Multiple appointments with my PCP. Test after test. Blood panels, stool samples, specialists. They gave me a checklist; I knocked it out. But every time I returned with results in hand, the very results they had asked for the response was flat. Detached. Vaguely condescending.
I remember thinking, “Finally, I’ve got proof. They can’t deny this now.” But denial didn’t require logic. Denial was the system’s default setting. I was handed the smoking gun, and still no investigation followed. I waited for someone to sound the alarm. What I got instead was professional indifference, passive gaslighting, and the crushing vacuum of institutional silence.
This was the hamster wheel phase. The meat of the story. The soul-grinding, reality-shattering middle where I was running full-speed through a medical maze with no exit; just circular referrals, redundant appointments, and dead-end explanations.
It wasn’t just the physical exhaustion, though that was near constant. It was the psychological exhaustion of being your own case manager, advocate, analyst, and emergency contact… all while your brain was offline and your body was shutting down.
Tasks that once took ten minutes now took hours. Birthday dinners? Out of reach. Grocery shopping? A maybe. A short walk to the store? A full-body negotiation. I wasn’t choosing to isolate; I was choosing not to collapse. And yet I had to sit in front of doctors, and explain this repeatedly like I was reciting a monologue no one wanted to hear.
And the most painstaking thought that followed me everywhere was this:
How could every single one of these doctors be so indifferent to my suffering?
I wasn’t asking for miracles. I wasn’t asking to be cured. I was asking to be seen. And I came with evidence. But instead of relief, I got brushed off. Instead of collaboration, I got condescension.
My charts became burial grounds, places where symptoms were laid to rest, not explored.
It wasn’t just that they didn’t believe me. It was that they had the data and still refused to connect the dots. This wasn’t just oversight; it felt like betrayal.
This was the chapter where the fire was already burning, but no one wanted to name the smoke.
And yet… I knew what I was living through. I knew the difference between “tired” and obliterated. I knew what it felt like to lose cognitive clarity, to forget simple words, to stare at a sentence like it was a foreign language. Brain fog was real. Pain was real.
Something was deeply wrong.
Their silence didn’t make it untrue. It made it unbearable.
The Smoking Gun, They Handed Me:
It was the first time in my long, strange illness that I felt like I wasn’t fighting smoke. This wasn’t just me describing my pain or fatigue. This wasn’t me begging for them to believe me. This was their own evidence, their own printouts. They had, at last, handed me the smoking gun.
But instead of an investigation, there was silence.
Instead of follow-up calls, there were excuses.
Instead of a case file, there was a dead file.
The more “objective” the evidence became, the less objective they acted.
The more the labs lit up, the dimmer their attention grew.
Waiting for the Big Picture:
By March 2023, I had been sick for nearly three years. I was exhausted but not naïve. When my PCP referred me to neurology at Mount Sinai, I let myself believe, maybe for the last time that this would be the appointment that cracked the case.
Two months I waited, staring at those results, memorizing the ranges, the highs and lows. In my mind, each abnormality was a flare fired into the sky: “Here. Look here. This is where I’m falling apart.”
The appointment came. I arrived at Mount Sinai neurology with my hope in one hand and their test results in the other, like a man delivering evidence to a prosecutor. Surely, with everything they’d asked for in front of them, they would finally connect the dots.
Instead, I was asked to spell “world” backwards.
Dismissal as Protocol:
I failed the test. My memory refused to bend.
I stood on one leg. I fell.
I named the wrong street for the building I’d just walked into.
This was their evidence, unfolding right in front of them.
And still there was silence.
I must have said “Long COVID” a hundred times in those office visits. I heard myself say it. Yet the only thing recorded in my chart afterward was that my labs were “within range” and that I had made a “subjective joke” about the president.
They didn’t just look away. They rewrote the scene.
Present but Not Accounted For:
This was the pivot point, the beginning of my “present but not accounted for” time. Not the vague, early months when I thought maybe I was overreacting. Not the speculative era when I hoped symptoms might fade.
This was the moment of proof.
This was the moment when what I had been saying was backed by their own metrics.
This was when my illness was no longer invisible on paper.
And yet, they still erased me.
Every lab, every test, every neurological sign pointed to a system in distress. Instead of investigating, they pivoted to dismissal, deflection, and delay. Instead of connecting the dots, they scattered them.
I was present, but not accounted for.
The Hamster Wheel:
Looking back now, this 22-month stretch from March 2023 to
January 2025 wasn’t just a gap in my care; it was the meat grinder of my story. The time when the evidence existed but the narrative was controlled. The time when my records showed everything but said nothing.
A hamster wheel.
A slow erasure.
A cover-up by omission.
It wasn’t that the evidence wasn’t there.
It was that nobody wanted to claim it.
Living Like My Body Wasn’t Breaking: The Price of Not Knowing:
Doctors shrugged. They called it stress. They called it “just getting older.”
What they didn’t call it was what it was.
And maybe they didn’t know how to fix it. But they could have at least said: “Stop. Slow down. Protect your energy. This is how you keep from crashing.”
Nobody ever said that.
I learned the hard way that my life wasn’t only being dismantled in exam rooms and on patient portals. It was being destroyed at home, in the everyday motions of a body that could no longer do the things it once did automatically.
I was still living as if I were the man I’d been before 2020. Walking up stairs two at a time, hauling grocery bags, staying up late to clean the kitchen. Tasks that used to be a warm-up had become marathons. And no one told me.
How could I have known that:
Standing on my tiptoes to put away groceries would set off a fatigue spiral?
Carrying laundry upstairs would rob me of the next day’s energy?
Sitting in a noisy restaurant, even for an hour, could provoke a multi-day crash?
Walking one subway stop farther “for exercise” was no longer an act of health but a gamble with days of exhaustion?
I thought I was being tough. I thought I was fighting back. Really, I was wearing myself down.
These weren’t big things. They were inches and blocks. But every inch required my whole body now. Every extra walked block became a hidden tax.
It’s not a medical breakthrough to buy a small step stool so you don’t have to reach. It’s not cutting-edge science to tell a patient:
“Break up your tasks. Avoid overexertion.” Yet no one said it. Not once.
I had to spend nearly four years, multiple “long COVID” support groups, and endless trial and error to even learn the word “crash.” To realize I wasn’t having random “episodes” I was exceeding a broken system’s capacity.
I was not self-sabotaging. I was uninformed. The virus had rewritten my body’s rules, and I was still playing the old game.
Even giving every doctor, the benefit of the doubt, and maybe long COVID was a mystery to them; the science of energy rationing, pacing, and post-exertional malaise isn’t new. It’s standard practice for lupus, fibromyalgia, ME/CFS, and other immune disorders.
They could have given me those tools. They didn’t.
So, I withdrew. Not because I wanted to. Not because I was punishing anyone. But because every action became a calculation of risk:
Will this cost me today, tomorrow, or the whole week?
That lack of guidance made the suffering just as hard as the virus itself. Maybe harder. Because it turned my own home into another battleground, and my own routines into a minefield.
Foreshadowing the Break:
I didn’t know it then, but this was the storm before Bellevue. This was the build-up to my most desperate act of getting myself admitted just to force documentation.
This was the era where my story should have been written by my doctors, but instead I would have to write it myself.
CHAPTER EIGHT
The More I Knew, The Less They Wanted to Know:
I once believed that knowledge was power. That if I could just become the expert of my own illness, if I could walk into appointments with facts, documentation, medical rights, and a deep, lived understanding of my symptoms, I would be taken seriously. I believed if I connected the dots clearly enough, if I handed over all the evidence, neatly laid out they’d finally see what I was going through. They’d have to respond. They’d have to act.
But the truth was far more sinister.
The more I knew, the less they wanted to know.
The Mirage of Engagement:
By late 2024, I had spent nearly four years navigating the same maze: symptoms, appointments, referrals, gaslighting, nothingness. The doctors at Mount Sinai had everything they needed to act. My records, scans, visible decline; all of it was right in front of them. I walked into each appointment like a man presenting a brand-new car, keys already in the ignition. All they had to do was turn the key.
They didn’t.
They stood there, hands in their pockets, and told me the car wasn’t real.
“It’s just some white matter.”
“Let’s schedule a scan in a year.”
“This kind of thing happens to everyone.”
Then they didn’t even call back to schedule the scan.
CHAPTER NINE
The Window with No View
I didn’t walk into Bellevue by mistake. I walked in with a plan.
After years of pleading with doctors to document my illness, coordinate care, and take me seriously, I knew the system would never validate me from the outside. So, I tried something radical. If no one would write “long COVID” in my file, then maybe I had to get inside the system.
I chose Bellevue not for its luxury, but because the name alone carried weight. I believed; naively maybe, that if I could get admitted, psychiatry and social work would have to communicate. That I’d be seen, finally, in full: physically, emotionally, psychologically. That they’d have to write it down. That long COVID would finally be etched into my record. I told myself: this will be hard. But at least it will matter.
After four years of systemic neglect, disappearing notes, misdiagnoses, and enough gaslighting to burn down a city block, I decided to game the very system that refused to see me. If no one would admit me based on long COVID symptoms, then maybe I could back my way in through psychiatry. Not by faking anything, but by finally speaking the truth that had been bubbling under the surface: this is killing me.
The idea came in a moment of raw desperation. The institutions that should have helped me had instead been complicit in erasing me. So, I told them I couldn’t take it anymore. That I needed help.
That I couldn’t go home.
And suddenly… doors opened.
They took me in.
Bellevue Hospital. Floor 12 South. An isolation room
Not quite the “long COVID unit” I had envisioned, but it was a room. It was a bed. It was time. It was something. And at that point, something was more than I’d had in years.
The Room with With a Vision
It wasn’t elegant. A bathroom with a swinging vinyl door, cold tile, fluorescent buzz. But strangely, I felt safer than I had in months.
I stared out the small, grated window above the FDR. The view was narrow, just a slice of the East River traffic and the occasional jogger or cyclist below. And yet, it was hypnotic.
I remember thinking: this is what life looks like when you're watching it from behind.
Not because I was locked in that room; but because I had been locked out of everything else for years.
It was a defining moment, I didn’t cry; I simply watched. I watched the cars move past like they were part of another timeline.
One that hadn’t paused in April 2020. One that hadn’t been erased.
One that wasn’t trapped in time.
And then it hit me: the world had moved on from COVID… and left me behind.
Embracing the Isolation
For the first time in ages, the walls around me matched the walls I’d been living inside since 2020. In some twisted way, it mirrored my reality. I was already locked out of life, so I didn’t fear the isolation room. I related to it. In fact, I requested it!
The silence didn’t feel foreign. It felt like home.
Every moment outside those walls had been spent performing wellness. Smiling through symptoms. Explaining things to doctors who refused to write them down. Asking for help in a language no one wanted to understand.
Here, at least, the silence was honest.
And in some warped way, I felt more documented than I ever had. Because even if no one fully believed me yet, the simple act of being admitted was more than any other clinic had done. No referrals. No gatekeepers. No pretending I wasn’t sick.
Just four walls, a wristband, and time to think.
Inside, time slowed. The fluorescent lights buzzed. The intercom screeched out codes I never understood. I found myself embracing the isolation room even more.
I journaled. I took mental notes. I stared at the walls. I counted the tiles on the ceiling and the screws in the bedframe. I memorized the pattern of the paint chipping on the door. I listened to the hallway chaos like a man deciphering Morse code: footsteps, screaming, metal carts, silence, footsteps again.
Each day was a war of attrition between patience and panic.
And yet I clung to one belief: This will count. This will be seen.
The Broken Promise of Being Seen
From the moment I arrived, I told them what I needed.
Not medication. Documentation.
I wanted long COVID on paper. I wanted the symptoms recorded, the timeline acknowledged, the suffering named.
They nodded. Took notes. The psychiatrist seemed thoughtful. The social worker was kind, even apologetic. They promised follow-up, coordinated aftercare, referrals. They even said they were working with my outside providers. I was informed on the third day that I was no longer being held there involuntarily; that I could discharge myself at any time. But it would present a greater challenge coordinating post-care, as their team only coordinates inpatient cases. I agreed, and 72 hours turned into 144. Each time I wanted to give up, I whispered to myself: This is the price of being believed.
The Most Accurate Record I Ever Received
When discharge day came, they gave me a piece of paper, a printout of my personal belongings.
It listed all the personal items I came in with. A pair of shoes. A phone charger, my cash, etc.
And it struck me with brutal clarity: this was the most accurate documentation I’d received in four years.
That was the only accurate documentation I left with.
The final discharge note read: “Mental disturbance.” That was it.
Six days. No long COVID. No coordination. No referrals followed through.
Just another ghost file in the system.
Every specialist had missed me.
Every chart had erased me.
But the property list, stamped and signed, got it exactly right.
It was as if the system finally admitted: you were here, and we were more concerned about the accuracy of your pocket change and phone charger than we were of your health and suffering.
The Paper Trail That Forgot Me
The official visit summary was thirteen pages long.
Thirteen pages of boxes checked, barcodes scanned, and billing codes itemized. Every aspirin, every apple juice, every temperature reading charged, coded, and recorded.
It documented everything except me.
They tracked my socks. My food. My vitals taken while I slept, sometimes without my knowledge. I was measured, logged, processed like freight. But my symptoms? My story? My reason for being there? Not a word.
According to the record, I was treated with acetaminophen, supportive talk therapy, and hallway observation. According to me, I was screaming for acknowledgment.
They noted how often I refused food. But not why I couldn’t eat.
They wrote that I walked the halls. But not that I was trying to stay sane.
They listed my items at check-in and check-out, but nothing about the existential reason I checked in at all.
No one wrote the words: long COVID.
Thirteen pages. And none of them held the truth.
I wasn’t discharged. I was itemized.
The Walk Down 1st Avenue
They released me in the early afternoon. No parade. No care plan worth trusting. Just a plastic bag of personal effects and some muttered well wishes.
I walked down 1st Avenue wearing a thin, hooded sweatshirt. The city felt unfamiliar, like it had shifted while I was upstairs.
Couples walked arm in arm. Kids spilled out of a school bus. A man selling halal from a corner cart.
It was all so normal, and so alive.
And I was still caught in the lag.
The gap between the COVID world and the post-COVID one.
The world had moved on. And I hadn’t.
But I Wasn’t Gone
I’d been dismissed, mislabeled, sectioned, and silenced.
But I wasn’t done.
Because something strange had happened in that isolation room.
For the first time, I saw clearly what I was fighting for. Not just visibility, but reintegration. A seat at the table of the living.
So, I zipped up my shirt, adjusted the plastic bag in my hand, and walked with purpose. Back into a world that didn’t yet have a place for me.
But one I was going to carve my way back into.
I had gone to the heart of the system, cracked myself open, handed them everything.
And they still refused to see me.
So, I would write it myself.
Let this be the record they wouldn’t keep.
CHAPTER TEN
Parchment Promises and the First Flicker of Hope:
The Post-Bellevue Erasure
When I was discharged from Bellevue Hospital in early October 2024, I was offered outpatient care with continuity and collaboration.
Instead, I was blindsided.
No discussion. No warning. I showed up at the pharmacy and learned my medications had been changed without my knowledge. My entire psychiatric regimen had been restructured without a phone call, consultation, or explanation.
I wrote a formal letter to Empire Psychiatry on December 3, 2024, addressed to three professionals by name. I laid it out clearly: this was not care. This was reckless. I cited HIPAA, patient rights, the tangible mental health decline that followed. I asked for reinstatement of my previous plan. I gave them time.
They never responded.
Not even an acknowledgment.
They didn’t discharge me. They didn’t explain.
They just stopped talking. They ghosted me.
The Letter They Never Filed
I started carrying printed letters into appointments, because I knew they’d pretend not to hear me. At New York-Presbyterian, I handed one of those letters to an administrator who promised to scan it into my file. It never made it into my chart.
Multiple follow-ups. Emails. Phone calls. Nothing. They didn’t forget. They ignored.
They didn’t misplace it. They deleted me.
That’s when I realized something deeper. I wasn’t just dealing with neglect; I was dealing with a system that depended on my silence. A system that worked best when I was passive, uninformed, and compliant. The moment I stepped out of that template, they stopped seeing me as a patient and started treating me like a problem.
The Numbers They Took, the Words They Ignored:
Just days after the letter disappeared from my record, I was finally able to see the after-visit summary of that November, 2024 encounter. Nothing there indicating that I even had a pair of lips, or any means to communicate for that matter.
I said the words out loud, repeatedly.
Long COVID. Long COVID. Long COVID.
It wasn't subtle, and it wasn't brief. It was the entire reason for the visit.
I told him what I had been through. The specialists. The failures. The fatigue. The cognitive collapse. I laid it all out, hoping this time it might finally stick. That someone might finally see past the vitals and document the reality of my condition.
Instead, the after-visit summary listed:
“General medical exam. Screening due. Anxiety. Neuralgia.”
As if I had dropped by to chat about blood pressure and seasonal stress. As if long COVID was a ghost I forgot to mention, despite saying it more times than I can count. Despite saying it in front of a witness. Despite the desperation that radiated off me like fever heat.
They recorded my weight: My pulse: My height:
They got their data. They got their codes.
They even got their billing, charging my insurance the following month for an appointment I never even scheduled.
They got everything they needed.
Except the truth.
Once again, I had shown up with my entire story in hand. And once again, the system chose to edit me out of it.
When You Know Too Much:
By this point, I knew my rights. I knew the laws. I had begun helping others by sending articles, documents, and research to friends and fellow sufferers. I was connecting the dots. And the closer I got to real understanding, the more hostile the system became.
It wasn't just indifference. It was a coordinated silence. A full retreat. As though my ability to speak clearly was more dangerous to them than my symptoms ever were. It became clear: they didn’t want my illness to go away.
They just wanted me to go away.
The Turning Point:
I had been erased, but I was still here.
And now, I was documenting everything.
They thought ignoring me would be the end of it.
But it was only the beginning.
By the time I stepped into the sterile, laminated waiting room of the New York-Presbyterian specialty practice in late 2024, I had long since abandoned the belief that hope would ever be delivered in a white coat.
But I still brought the letter again.
Typed. Printed. Folded with surgical precision. A distilled version of four years’ worth of torment, systemic erasure, and the truth no chart had ever reflected. My sister stood next to me, just as exhausted, just as desperate for someone, anyone to finally see me.
I watched the receptionist’s fingers as she took the page. She said she’d scan it into the system. That it would be part of my file. That the doctor would see it. My eyes widened, a sense of joy rushed through me, as I breathed an exhausted yet cleansing audible exhale. “FINALLY!”
She even held it up like it was made of parchment, some sacred decree.
She scanned it right in front of us. We saw the screen flash.
And yet…
It never showed up in my chart.
Days passed. Then weeks. I refreshed the patient portal with the nervous repetition of a lottery player checking numbers. Nothing.
No note. No upload. No trace.
When I called to ask about it, the tone changed flat, corporate, and cold. I was told I’d need to submit a formal request in writing if I wanted to see my own records. As if this was some CIA document, requiring official declassifying. As if I hadn’t witness them scan the letter with my own eyes.
I wrote again. I called again, even emailed the NYP regulatory department multiple times. I got nothing.
And then something cracked inside me. Not a breakdown. More like a breaking free.
Because what happened that day wasn’t just negligence. It was one last brutal reminder: even when you do everything right, even when you put the truth on paper, beg for help, hand-deliver your story; it can still vanish. Not because it’s wrong, but because it’s inconvenient.
That was the last doctor I saw who wasn’t a long COVID specialist. The last time I let someone gaslight me into silence.
It wasn’t just déjà vu.
It was déjà vu all over again.
CHAPTER ELEVEN: The Crossroads
By late 2024, I stood at a kind of intersection. Not the poetic kind where two roads diverge in a golden forest, but a battered, cracked stretch of pavement, one that hadn’t been maintained in years. I was bleeding from a hundred bureaucratic cuts, still limping from Bellevue, with a backpack full of records and a heart full of exhaustion.
The system had tried everything short of outright telling me I didn’t exist. Doctors ghosted. Clinics erased. Pharmacies altered prescriptions without a word. And yet, despite all of it, something in me kept walking. Kept documenting. Kept hoping.
But that hope was now threadbare, almost see-through.
So, when the phone rang and a voice on the other end said, "We have an opening in six weeks," I didn’t cheer. I didn’t even remember signing up for anything. The only thought that flickered across my mind was: Is this the last shot? Is this even a shot at all?
I didn’t believe it. Not really. But I also didn’t have the energy left to resist.
The Last-Ditch Thread:
The appointment was with a place I had probably scoured through a dozen times before, back when I still believed in magical directories and open-minded clinicians. NYU Langone’s Post COVID Care Program. At some point, I must’ve put myself on their waiting list. I honestly couldn’t recall. So many forms. So many portals. So many dead ends.
But this one felt different.
It came with a name.
Dr. John Munger.
I clicked the link they sent and scrolled through the team’s bios. There he was: calm eyes, steady hands, and a profile that spoke in quiet reassurance. I memorized every detail, his credentials, specialties, even the expression in his photograph. I stared at his face the way castaways stare at a coastline, daring to believe it’s not a mirage.
Could this be it?
Could someone finally see me?
Could someone finally believe me?
I wasn’t ready to trust again. But I was ready to show up.
And sometimes, that’s the bravest thing a person can do.
CHAPTER TWELVE: The Doctor Who Didn't Flinch
It was raining when I showed up for the appointment at NYU
Langone; classic movie-scene rain, like the sky had read the script. A soaking, cinematic kind of rain that made everything feel more serious, more final. I stood outside the building off Second Avenue, the wind curling around my coat, wondering if I was about to be let down all over again. Wondering why I’d come at all.
The truth? I didn’t come because I believed something magical would happen. I came because I had nothing left to lose. Four years of gaslighting, abandonment, and degradation had scraped me down to the bone. And if this went wrong, too, if this doctor turned out to be just another gatekeeper guarding the status quo I wouldn’t even have the strength to rage.
But what I found wasn’t another wall.
I found Dr. John Munger.
From the first moment, he didn’t look away. He didn’t rush. He didn’t perform concern while already thinking about the next patient. He sat with it. With me. And he listened. Not the kind of listening that ends in “but maybe it’s just stress,” or “you’re probably just tired,” but the kind that makes you feel like your words might finally be safe. That you might be safe.
He asked me questions no one had ever asked before. Not because they were obscure, but because no one had cared enough to ask them. He let me describe the moment it all began: walking through the city in early 2020 when the confusion hit, when the lights in my brain started to flicker. He didn’t interrupt. He didn’t doubt. He believed me.
A Doctor Who Knew What He Didn’t Know:
But what moved me most wasn’t just what Dr. Munger did know, it was what he admitted he didn’t. The humility in his voice when he said, “We don’t have all the answers… but we’re not going to give up.”
That phrase echoed louder than any test result ever could.
We’re not going to give up.
For the first time, I wasn’t being erased. I was being held. I was being placed back inside the medical narrative, not as a mystery to be avoided, but as a human being to be understood.
He ordered labs. He wrote referrals to rheumatology, neurology, psychiatry, psychology, GI, rehab medicine. He
talked about low-dose naltrexone like it was a real, viable option; not some fringe idea I needed to beg for.
As overwhelmed, and scattered as I was, I found the courage to ask sheepishly “How do I go about getting a diagnosis?” He casually turned toward his screen and pointed, like he wasn’t cracking open four years of dismissal, and said:
“The diagnosis is already in your record, it’s right there.”
And right then, my phone buzzed. A notification from the patient portal:
New After Visit Summary available.
The Note That Changed Everything:
January 9, 2025
Severe long COVID syndrome. Based on his history, I believe he had COVID in April 2020 with onset then of a severe long COVID syndrome characterized by cognitive changes and fatigue, shortness of breath… He has terrible tinnitus. He is so weak and fatigued, he cannot lift his laundry without stressing his body. He cannot sleep well. He thinks the tinnitus wakes him up…
As he spoke, I felt something come undone in my chest. Not a breaking, but an unlocking. It was real. It was there, in my chart, in my records, in ink that couldn’t be deleted. I had spent four years shouting into the void, and finally, someone had written it down.
I wanted to frame the screen like a diploma.
I had been waiting for that sentence longer than most people wait for verdicts, diagnoses, or miracles. Because it was a miracle. And for once, it didn’t feel like I had to fight for it. I just had to survive long enough to find someone who knew what they were looking at.
I stared at it like it was a birth certificate.
Something Shifted
I wasn’t fixed, and the ringing and fatigue were all still there. I certainly wasn’t cured.
But I was finally documented. Finally believed. Finally visible, and sometimes that’s where healing begins.
CHAPTER THIRTEEN: After the Silence, NYU Speaks
There comes a point when the body no longer whispers, when symptoms stop asking politely and start kicking down doors. I had reached that point years before, but no one seemed to care. Until
NYU.
For four years, I wandered a medical desert, appointments that ended in shrugs, labs that were never followed up on, and doctors who seemed more interested in their screen than in the living, breathing person sitting across from them. I wasn’t a patient. I was a problem they wanted to go away. And they treated me as such:
like someone desperate for attention, or possibly a little too informed for comfort.
When I told them I was tired, they told me it was stress. When I told them I couldn’t think straight, they asked if I had tried journaling. When I mentioned the ringing in my ears, they told me to "try not to think about it."
It would almost be funny if it weren't so tragic.
The contrast with NYU Langone couldn’t be more jarring. Within weeks of meeting Dr. John Munger, the world shifted. Not because he fixed me, but because he saw me. He validated the years of struggle with a single sentence: "You have long COVID."
And then, for the first time in four years, the system moved.
A Flood of Action:
At NYU, my fatigue wasn't waved away as "burnout." It was investigated. Granular nutrient panels were run, not just a CBC and a half-hearted thyroid check. They found critically low iron stores, vitamin deficiencies, elevated inflammation markers, and neurological abnormalities. They didn't gasp and send me home with a pat on the back. They acted.
Iron infusions were scheduled immediately. Nutritional deficits were met with aggressive supplementation and dietary guidance. They didn’t just hand me a multivitamin coupon; they got specific, targeted, and thorough.
My tinnitus, long dismissed as psychosomatic, was finally acknowledged as neurological. They prescribed medications known to alleviate not just the noise, but the underlying cognitive fog. Some of it worked negligibly, some didn’t; but the point was they tried.
And when brain fog became so intense I could barely hold a conversation, they didn’t send me to a grief group or recommend I "pace myself." They ordered an MRI, a neuropsychological evaluation, and an internal referral to neuroimmunology. They connected the dots instead of drawing question marks.
A Medical Paper Trail That Told the Truth:
Referrals flowed like a dam had finally burst:
Gastroenterology for chronic GI issues
Hematology for unexplained anemia
Rheumatology for autoimmune panels
Endocrinology to investigate energy loss and hormone dysfunction
Physical therapy not as a "wellness suggestion," but as a structured, physician-ordered intervention
The same complaints that once got me recommended a spa weekend were now generating serious, specialist-directed care.
Systemic Shame, Personal Relief:
Here was the bitter pill: nothing in my story had changed. I hadn’t changed. My symptoms hadn’t lessened, and my complaints hadn’t gotten more articulate. The only thing that changed was the credibility someone else gave me.
A Year from Bellevue:
September 25, 2025. A full year has passed since I walked into Bellevue Hospital, not as a last resort, but as a final gambit. And here I was, 365 days later, standing once again in Midtown Manhattan under the same cinematic drizzle. The sky hung low and bruised, a brooding grey that had followed me like a shadow since the day this all began.
Same time of day. Same city. Same rain.
But something was different.
This wasn’t Bellevue. This was the 17th floor of NYU Langone’s gleaming tower. I stepped into Dr. Munger’s office, feeling the eerie symmetry of a moment folding in on itself.
Out the massive windows behind him, I could see the Chrysler Building, not just as a postcard silhouette but in full architectural detail. The Nirosta steel crown, the delicate triangular windows, the Deco geometry so close I could practically touch it. I’d seen this building my whole life, but never like this. Somehow, even through the clouds and haze, I saw it clearer than ever.
We sat down. He turned to his screen. A year of my medical life sprawled out in front of him; nearly 700 pages long. Scans, symptoms, referrals, bloodwork, unanswered calls. My entire four-year descent into systemic failure, now condensed into clicks and scrolls.
But it wasn't the data that made this visit different. It was the man reading it.
Dr. John Munger didn’t look at me with pity. He didn’t blink away discomfort. He didn’t gaslight me into polite silence. He asked, he listened, he wrote page after page, pen scratching across the paper with the kind of concentration I had only ever seen in courtroom stenographers and cathedral architects.
His pen, a gold-tipped instrument that looked like it belonged in a 1920s ledger, never stopped moving. Not when I told him how friends had disappeared. Not when I explained how psychiatrists tried to pin a name on what I was going through that had nothing to do with post-viral trauma. Not when I laid bare the exhaustion of being a mystery patient in a system that prefers answers over honesty.
And unlike every doctor before him, he walked me to the door.
Still writing. Still thinking. Still with me.
That walk meant more than anything. It said: I’m not turning my back on you.
We talked about tapering off providers who had added more fog than clarity. He offered to take over prescribing the one thing that helped promote better wakefulness- modafinil. Why was I paying $400 a month for a psychiatrist who kept insisting I was simply depressed? Depression was the only thing I wasn’t feeling!
We talked about my retreat from the world not as pathology, but as survival. He didn’t try to cure it. He didn’t shame it. He saw it for what it was: a strategy. The only one I had left.
I didn’t walk away with answers. But I walked away with something rarer.
Truth.
And when you’ve been lied to for over four years, truth is revolutionary.
Somehow, on the exact anniversary of my plunge into the institution, I found myself not in a padded room, but perched above the city, watching the rain trace the glass while the world below marched on.
I wasn’t healed. But I wasn’t alone, and now I’m the one holding the eraser.
The Silent Scream:
There’s a funny thing about silence. It isn’t always quiet. Sometimes it screams. Sometimes it hums in your ears like a high-pitched frequency, steady and cruel. Sometimes it scratches at the corners of your chart notes, erasing what should have been obvious: that you’re still here, that you’ve been here the whole time, begging to be seen.
But something changed in the fall of 2025.
Once Dr. John Munger entered the scene, my medical records, those cold, stubborn repositories of my suffering suddenly began to tell the truth. Not some abstract or diluted version of it, but my truth. The same one I'd been screaming into the void for nearly five years. With a few strokes of a keyboard and the audacity to listen, he began to overwrite years of strategic medical neglect. My chart went from being a tool of erasure to a ledger of survival. The silence began to fade. And I got to hold the pen.
September 25, 2025. NYU Langone. Post-COVID Care Clinic.
The appointment summary didn’t dodge, downplay, or dismiss.
Right there, in black and white, it said:
“Continued severe long COVID syndrome.”
It didn’t say possibly, or appears to, or patient claims. It said it.
Stated it. Owned it.
He documented the brain fog, the tinnitus, the pain in my back and legs and fingers. He noted the persistent insomnia, the suspicion of thalassemia, the lingering fatigue, the auditory distortions, sirens in my ears, phantom sounds in the hallway that turned out to be very real. He wrote down my skepticism about antidepressants and the weight gain they triggered. He mentioned my disappointment with Cymbalta and gabapentin. He noted my sensitivity to noise, my frustration, my fear. And he didn't flinch.
He didn’t say “subjective.”
He didn’t say “within normal limits.” He didn’t blame it on anxiety.
He didn’t write a joke and leave everything else out.
He listened.
And then he wrote.
And just like that, my chart transformed from a sealed tomb into a witness box.
It wasn’t that my symptoms improved. They hadn’t. Not really. I still wasn’t sleeping. The tinnitus still clawed at my sanity. My muscles still sagged with exhaustion. I couldn’t lift my own body weight without crashing. I still couldn’t work. Still couldn't remember simple things. Still struggled to walk into a building and recognize where I was.
But now, finally, someone else was willing to say that this wreckage was real.
Dr. Munger didn’t promise a cure. But he didn’t pretend this was fiction. He documented what I said. He referenced my ongoing referrals. He acknowledged the complexity. He left space for hope, not by suggesting it was all in my head, but by treating me like someone who had a head worth fighting for.
He even noted things like:
“Patient has not had luck finding a neuropsychiatrist.”
“Patient is wondering if 200mg of modafinil is too low.”
“Patient says he wants to be off some of his medications.”
All of this might sound mundane, but for me, it was revolutionary. My own words were finally making it into the official record. No filters. No reinterpretations. No gaslighting edits. For once, I was speaking through my chart instead of being silenced by it.
Back in June, his earlier note also acknowledged how hard things were. There was no fantasy about recovery, just a clinical, compassionate recognition of what I was up against:
“Due to the severity of his fatigue and brain fog, he is not able to work.”
Those words, simple as they may sound, can be life-changing when you're trying to survive a system designed to disbelieve you.
They don't just validate suffering. They become proof. They open doors. They hold weight.
That June note also marked a 3% improvement, a number so small it sounds absurd, yet I clung to it like it was oxygen. He documented it without mockery. He wrote about low-dose naltrexone, Linzess, GI interventions, iron therapy, even my crashes from physical therapy. He didn’t cherry-pick. He included the whole picture.
So here I am.
Not cured.
Not reborn.
Not restored to my 2020 self.
But I'm no longer invisible.
They didn’t succeed in erasing me. And now, every time I log into my patient portal and see those notes, I see the reversal happening in real time. The lies and omissions are being pushed down the page, replaced line by line with my reality. My body may still be failing, but at least I’m allowed to testify on its behalf.
The silence is shrinking.
The gaslight has dimmed.
And the eraser… is finally in my hand.
Walk of Reflection:
As I left the NYU building on September 26, it felt both literally and metaphorically like I was standing at a fork in the road. But this wasn’t the kind of metaphor that lends itself easily to clarity. It wasn’t a moment of decision that felt empowering, nor one that marked some visible forward momentum. As paradoxical as it sounds, it felt like both everything and nothing at once. It wasn’t that the appointment was discouraging, but nor was it anything I would classify as hopeful. There were no breakthroughs, no new paths laid out. But there was weight in that moment; the heavy stillness of acknowledgment.
I paused on the sidewalk, debating whether to take the quick walk to the nearest subway or extend my route to the 14th Street subway station. I chose the longer path. Not because I had more energy, but because I knew, deep down, this would be the last meaningful movement I’d have in me that day. Maybe even that week. It was
1.6 miles. To some, that distance is nothing. Once upon a time, it was nothing to me too.
There’s something about those walks down First Avenue. I do some of my best thinking there. There’s clarity in that ritual; a familiarity in the numbered streets ticking downward, in the rhythm of my steps against pavement, in the voices of people whose lives are still in motion. Families gathered at outdoor cafes. Couples laughing under awnings. Strangers chatting over coffee and plates of food. It never feels like envy. I don’t resent them for what they have. But I do notice the distance between their lives and mine. A silent chasm. I observe their joy the way one watches a film, emotionally invested but entirely separate.
When I see Dr. Munger, there’s always a flicker of hope that maybe he’ll say something transformative: “There’s a new treatment,” or “We’re seeing progress in others, you might benefit too.” I don’t expect it, but I allow the door to remain cracked open. Because I would try anything. My history already shows that from obscure supplements to regulated experimental trials. But the truth is, my journey was never just about getting a diagnosis. It was about opening the gate to access. To validation. To treatment. To reclaiming the right to own what was happening to me.
For years, I told doctors I was exhausted. They said it was stress.
I told them I had tinnitus. They told me not to think about it.
I brought in blood panels full of red flags. They handed them back with empty smiles and told me to eat better.
At NYU, it was different. They looked deeper. They didn’t tell me I was fine; they told me I had iron deficiency and scheduled infusions. They acknowledged the brain fog and prescribed medications. They took my bloodwork seriously. They gave me action.
That walk down First Avenue marked something else: the moment I realized I was no longer shackled to the invisible weight of not knowing. I had been carrying this illness around for years like a locked suitcase; never allowed to open it, but always responsible for it. And now, it was open. There was no magic cure inside. But there was the truth. There was clarity. And with that came something dangerously close to relief.
The suitcase held only what I had left: myself. And though that version of me is undeniably different than the one from five years ago, it still has agency. It still has capacity. It still has motion.
I’ve stopped asking “Why me?” There’s no formula to who gets long COVID or how severely it manifests. Some people breeze through it. Others crash and never fully stand again. There are elderly people who attribute their sudden exhaustion to age. Young people who don’t even know their symptoms aren’t normal. There are millions of us. But we’re scattered across the world, isolated not just by geography but by the very nature of the illness itself. When the brain is fogged and the body unresponsive, connection becomes a luxury.
That doesn’t make me bitter. It makes me realistic.
The system failed us. All of us. But I’m not here to rage against the system anymore. I did that already. I’m here now to make sure I don’t fail myself.
Maybe that’s the biggest shift: I don’t need a medical institution to validate my experience anymore. I don’t need a headline. I needed clarity, and now I have it. I needed a diagnosis, and now it’s documented. I needed the strength to figure it out on my own, and somehow, despite the fog and fatigue, I did.
So now what?
Now I move forward. No matter how slowly. No matter how often I must stop to breathe. Because I have no intention of looking back in five years and wishing I had done more. I have no interest in abandoning the one person who stuck by me through all of it: me.
The Awakening:
Friday, September 26, 5:18 PM
I just woke up from what has become my ritualistic afternoon nap. There's rarely anything to show for the day. Maybe I managed to push this memoir forward, maybe I skimmed through my emails; but nothing of substance. I often drift off with my morning coffee still half-drunk and lukewarm on the table, as though caffeine might still play saviour. It never does. Sleep is my only sanctuary, a small mercy. It's an escape hatch I willingly crawl through, even if I know what waits on the other side.
Waking up is the punishment.
It’s bittersweet, because sleep offers the illusion of reprieve, of forgetting. But I always wake up. I always come back. Back to this muted, grinding version of existence. I no longer make plans; there is no "ahead" to plan for. Life has become a string of abandoned intentions. "Going to the store in an hour sounds great," I might say, only to find myself sitting down again when the time arrives, whispering, "Nope."
When the window to my bed opens, I climb through and surrender.
It no longer matters whether it's the fatigue or the pharmacy of
pills making me tired. I'm tired regardless. And I'm tired of changing to adapt to being tired.
Lately, the dreams have become vivid, more textured, chaotic but I welcome them. I find myself immersed in social lives I no longer have, comforted in the arms of imagined lovers, surrounded by voices that call me by name. Somewhere inside, must still crave to reclaim that part of life, even if I no longer think about it consciously. I must, because my subconscious does.
And when I wake from these dreams where I’m screaming, running, arguing, or escaping; my body reacts violently. My symptoms flare as though they too have been running in that world. My head feels like a balloon being inflated and released, repeatedly. The ringing in my ears reaches a punishing pitch. The pressure wraps around my skull like a vice. I am at my darkest in those first few minutes of consciousness. This is who I am now.
This has been my life for five years.
And no, I can't simply go back to sleep.
There is only one destination, and it's always the same: back down the stairs, to the couch, to the slow crawl of minutes. I’m not depressed. I know that with certainty. I don’t regret quitting the antidepressants. They helped nothing, and worse, they dulled my instincts. I bear no grudge toward those who need them. I'm far beyond stigma or shame. I've already been labelled every which way. It's not even the faulty logic of "they're for depressed people, and I am not." It's this: I want to do the things I can't do.
I want to.
I don't sit out of life because I don't care. I sit out because my body has no reserve, no capacity. It takes a certain level of participation to exist among others. To contribute to a conversation. To go on a simple walk. To love. Even "detached" companionship demands energy, and I have none to spare. I'm not ashamed of myself. I'm not trying to be a martyr. But victimhood is a vulnerability I can’t wear right now. It’s too heavy.
The world, it seems, is calibrated for the functioning. Every interaction assumes a baseline of ability. A simple "How are you?" is a landmine. So is "How's it going?" or worse: "How are you feeling?"
Loaded questions.
Answer truthfully and you risk alienation. Dodge them and you reinforce your own invisibility. It becomes easier to avoid people entirely. And that’s just a microcosm of the isolation.
Yes, in some ways I’m better than I was on that thunder-washed Thursday of January 9th. That day it all changed. Dr. Munger finally gave shape to my story. He documented it. He did what nobody else had the courage or clarity to do: write it down. On paper. In my file. He gave it weight.
Because of him, the Social Security office took another look. Because of him, other doctors began to listen. But am I truly better?
My body is weaker. The ringing is louder. The loneliness still stings. The answer to whether I’m better is a Rorschach, it depends who you ask. Perhaps the only progress is that there is now a record of my pain. Perhaps that is its own kind of victory.
I liked ending yesterday’s appointment on a hopeful note. None of this is fiction. None of it has been reconstructed. I only remember as much as I do because of the trail of records, folders, and files that tell the story I was too sick to write in real time.
But as I consider how to wind this memoir down, I realize: there is no end. I may drop the pen. I may close the laptop. But the story goes on.
The part that stays with me most from yesterday's visit wasn't triumphant. It wasn’t hopeful. It wasn’t even a victory. It was something smaller, more subtle.
As Dr. Munger walked me out, I told him I look forward to our appointments. He looked puzzled.
"Surely I’m not the first one of your patients to say this,” I said. "You can see in my records that you were the first to document my condition properly. Most doctors can’t even say the words 'I don’t know.'"
He nodded. "I say 'I don’t know' all the time."
"I know," I told him. "That’s why I look forward to coming." I’m not sure that resonated. But what came next did.
I said, "All I have now is the truth. I just want to know how to pivot without making things worse."
I told him I haven’t heard of any breakthrough trials. That the gap between theory and treatment can span decades. That I’ll be 54 soon. That doctors could soon begin blaming age. That I will likely carry this virus with me until the end.
He didn’t flinch. He didn’t correct me. He didn’t offer false hope.
He simply looked at me. Not sadly, not neutrally. Just present.
And he said, quietly, "Probably."
Alternative Avenues and Unconventional Answers: This is where I got brutal honesty.
I did join several Facebook, the Mayo Clinic and NYU Long COVID support groups, probably 100,000 participants between the all of them at the time I found them. I signed up and started reading and posting. That was about 18 months ago. I’m sure the number has since doubled. People were raw. They were experiencing the same dismissals and neglect from doctors, clinics, hospitals, family, and friends. The diversity, culturally and symptomatically made it difficult to follow any single person's advice, but the commonalities were undeniable. They resonated.
And, more than anything, they helped me cope.
It was more clarity and straightforwardness than I had received from any doctor, more than all of them combined over the entire span before NYU. Nobody shrugged. Nobody dismissed. Nobody disbelieved. They listened, they empathized, and they gave constructive feedback. Some even welcomed and asked for mine. It wasn’t judgment. And it certainly wasn’t a mental game.
I also went to acupuncture for eight months. While it didn’t yield clear physical results, it provided structure and access to someone who believed me. Someone who was trained in the practice of treating people who were either not accepted or not accepting of traditional medical interventions. She gave me a voice. She gave me clarity. She gave me honesty. Even after seven months, $7,000, and nearly 100 early-morning trips; each often taking the entire weekend or longer to recover from, there was something grounding about being seen and heard without skepticism.
The acupuncturist was so determined to help; she offered to see me for another month without accepting any further payment. Her
words were, “I have a difficult time allowing myself to be defeated when trying to provide meaningful help.” That stuck with me. And I agreed.
Halfway through that free extension, though, I still felt no better. During what would be my final session; needles all over my body, the routine now familiar. I told her gently that there was no need to continue the last two weeks. That the subway rides, the residual pain from being punctured daily, the noise, the energy cost were all taking more out of me than anything those final sessions could possibly give back.
“To put it simply,” I said, “I haven’t gotten any better.” She looked at me with full sincerity and replied, “I agree.” I don’t think I’d heard those words in four years.
All I had heard from medical professionals during that time was disagreement, resistance, gaslighting, and blame. That small moment of validation; honest, quiet, and without ego meant more than anything that needles ever could.
And I don’t regret a single dollar or effort I spent trying on any of the alternative treatments.
Because those experiences didn’t leave me with doubts. It didn’t fester in my head as one more “what if.” I did try them. They simply didn’t help.
In fact, most things didn’t help. My list of dead ends far outweighed my list of breakthroughs. So, I had to redefine success. Sometimes success meant a better understanding of what does not work. Sometimes success just meant learning how not to set myself back.
I also tried hyperbaric oxygen therapy. My first few sessions were at a faraway clinic that was overly clinical and sterile. $300 per session. The kind of place that promises nothing and charges everything. I couldn’t afford it. But a family member stepped in to cover a limited package.
To my surprise, that first 60-minute session showed potential. I felt something. I felt good, a word I hadn’t used in years. It didn’t last long, maybe a few hours, but it was something. I finished the rest of the package. Unfortunately, there were no lasting improvements.
Later, I found a clinic closer to home that offered lower-pressure chambers at a much more affordable rate. I did roughly 25 sessions there. And while they didn’t hurt me, I can’t say with confidence that they helped me either.
But still, I tried.
The Lit Goes On:
I wasn’t alone. Not even close. There are now hundreds of thousands of us in the area, possibly hundreds of millions spread across countries and continents, all telling the same story. What separated us wasn’t the nature of our suffering, but the address on our insurance card. Our narratives, in tone and content, were indistinguishable; denial, dismissal, disorientation. And all of it wrapped in the steady gaslight of “nothing is wrong.”
These are just fragments from fellow sufferers. Most of whom I will never meet, but who have become, in many ways, more validating than any doctor I ever saw:
“Three years in, still no diagnosis.”
I live in a country where Long COVID doesn’t officially exist. I’ve seen some of the most respected specialists in our major hospitals. They all insisted the symptoms were psychological, or that I was simply overthinking it. Every scan came back normal, and with that, the conversation ended. There’s no research, no recognition, no roadmap.
“Ordinary life has become punishing.”
Just moving through a room while people talk around me overwhelms my brain. Simple tasks like vacuuming or holding a phone conversation feel like running a marathon. Even physical therapy, eight weeks of effort hasn’t restored a sense of normalcy.
There’s no anchor, no predictability.
“My brain short-circuits under pressure.”
This isn’t vertigo, but it feels like my brain vibrates inside my skull. Too much stimulation talking while walking, switching between my phone and the TV, reading while music plays triggers dizziness, head pressure, and a crushing sense of disorientation.
Even scrolling on my phone now feels like a feat.
“Therapists can’t cure what they don’t understand.”
Ever since COVID, I’m more anxious, more uncertain. The symptoms don’t last all day, but they show up every day. My doctor recommended a therapist, but that doesn’t explain what’s happening to my body. I feel like I’m carrying the weight of a broken system on top of a broken self.
“I woke up dizzy and never came back down.”
My Long COVID didn’t explode overnight, it crept. Brain fog, fatigue, and then one day in 2021, I woke up dizzy and never stopped spinning. Physical therapy helped somewhat, but medications like Meclizine did nothing. Some days nasal sprays and decongestants dull the ear pressure. Other days, I survive on ginger sodas and seltzer just to keep fluids down. Multi-tasking is a cruel joke; my brain can no longer juggle.
“I don’t need more tests; I need one that works.”
My primary doctor has no clue how to interpret half of what’s happening, and I don’t blame him. I just want one test to show something. Anything. Dozens of ‘normal’ labs can’t explain why I feel this broken.
“Small changes help, but it’s never linear.”
I manage shortness of breath, brain fog, and intense fatigue. Staying hydrated and eating decent meals seems to help… sometimes. I’ve adjusted meds under supervision, upped my antidepressant, added B12 and magnesium. I have moments of clarity, but they’re fleeting. No one thing solves anything.
“My Vitamin D was practically gone.”
Post-COVID, my vitamin D levels were so low they were undetectable. That alone explained a part of my fatigue, but no one had thought to test it until I pushed.
“Sleep is a myth.”
Since catching COVID in 2020, I wake up feeling like I’ve been hit by a truck. Sleep doesn’t reset me. Sometimes, it's marginally better; other days, my body feels like it’s crumbling before I even leave bed. It’s not depression. It’s not laziness. It’s cellular collapse.
Shared Pain, Shared Insight
Those aren’t my words; yet they’re telling my story. There were no names. No medical charts. No titles. And yet the clarity, courage, and raw honesty of these anonymous voices gave me more insight than every specialist I had seen.
They didn’t treat me like I was crazy. They didn’t try to sedate me into silence. They didn’t call it stress, or anxiety, or “just one of those things.”
They heard me, and they believed me.
Why This Story Matters:
This wasn’t written with a clear agenda. Just like the countless appointments, tests, and dismissals I endured. It began without direction, without support, and without purpose handed to me. It emerged organically, as my life did: through necessity, through survival, through the quiet insistence that my story deserved to be told.
This isn’t a headline. It’s not a whistleblower’s exposé or a public reckoning. It’s not even a carefully measured critique of the systems that failed me; though they did, so profoundly. This is my truth. My lived experience. A story I was never given the chance to be heard inside a medical office, or behind a white coat’s
clipboard. It’s a narrative forged from silence, so I had to become the voice.
Yes, it’s about gaslighting. About the haunting feeling of being disbelieved when your body is screaming. It’s about being handed off from specialist to specialist like a burdensome file, with no one daring to open the contents. But more than that, it’s about becoming your own lifeline. About holding onto yourself while your body and mind are in freefall.
I didn’t write this to be cathartic. I wrote it because I had to. Because if I didn’t preserve it, I feared it would vanish like everything else; the dignity, the health, the clarity, the belief in fairness. But even more than that: I wrote it in the hope that it reaches someone. Anyone. If it brings even one person clarity, or helps them feel less alone, then every word was worth the effort.
Because while this is my story, it isn’t mine alone.
The only randomness in this journey is who gets Long COVID and how it manifests. Everything else is patterned, systemic, and painfully familiar across continents and communities. The symptoms are now estimated at over 200 of them, and that’s just the ones we’ve catalogued. How many remain unnamed? How many go unrecognized in those too young to articulate their collapse, or too old to be taken seriously?
What about those whose cognitive decline masks their awareness that something has changed? Who speaks for the 80-year-old survivor gently dismissed with, “Well, at your age, fatigue is expected” as if aging now excuses indifference?
What of the teenager whose life was just beginning? The young adult building a future, now sidelined before their prime? Or the elderly, manipulated by the quiet authority of white coats into believing this slow, strange death of their vitality is natural, deserved, inevitable?
No. It’s bigger than that.
It’s bigger than COVID. Bigger than medicine. Bigger than me.
This is about clarity. Transparency. About restoring agency to those who were stripped of it the moment their bloodwork came back “normal.” It’s about not having to lose your mind while searching for a name to what’s haunting you. It’s about not collapsing within your home, in secret, until your body’s betrayal becomes your new normal, or becomes unknown levels of intolerable.
It’s about being heard.
We should not have to bury our truths inside anonymous support groups, or whisper them into digital forums where empathy blooms but solutions seldom follow. We deserve better. We deserve not just care, but care with context. Not just diagnoses, but understanding. Not just prescriptions, but truth.
This isn’t just about a virus. It’s about a world that failed to listen, and the human cost of that silence.
Am I Dreaming, Or Did I Flip a Switch?
September 27, 2025 – 5:18 PM
I just woke up from what has now become my ritual afternoon nap. But something today felt… discernibly different. Not better or worse, just other. Since March 2020, the word “different” has usually signaled decline, a harbinger of some new symptom or loss I hadn't yet learned to grieve. But this wasn’t that. This difference wasn’t steeped in dread, it was simply unfamiliar, a deviation from the oppressive norm.
The sleep hadn’t been deep, nor did it stretch into my usual two-hour escape. And unlike most days, there were no dreams, no frantic narratives punctuated by crescendos that jolt me awake in confusion. Typically, it’s like my subconscious goes into overdrive, flooding my mind with imagery and emotion until my body is forced into panic. Clinically, it's what some neurologists have described as "limbic overactivation" a fight-or-flight surge that doesn’t know how to stand down, even in dreams. The result is always the same: I wake up gasping, disoriented, drowning in invisible noise and flickering lights behind my eyes.
But not today.
Today, the sirens were distant; still present, but softened. More like a smoke alarm muffled by walls, not the blaring alarms that usually live inside my skull. I’m not sure I’ve ever heard my tinnitus so low in volume since it began. It wasn’t gone, let’s not mistake it for silence but it was a new kind of quiet. A reverent quiet. The kind that doesn’t scream for attention, yet speaks louder than all the chaos I’ve grown used to.
Was it a fluke? A calm between neurological storms? Or dare I ask, were the iron infusions finally beginning to touch some hidden layer of this condition?
I don’t know. But I do know this: I have a process now. I track things. I listen more closely to my body, to my breath, to the thousand whispers of triggers waiting in the margins of my day. They're still everywhere, and I am still fragile but I try every day, to put some kind of buffer between them and me.
An hour later, I made the innocent mistake of clicking on a news article. I’ve long reduced my screen time, particularly news consumption, knowing the cost. But this time I slipped. And within moments, like a triggered memory the ringing returned, louder now, warbling like a theremin with vibrato. It felt like being pulled back into a familiar void.
Without hesitation, I closed the browser and set my phone aside. I began to breathe long, slow, intentional breaths. And something incredible happened: the volume receded. Not fully, but it shifted back to that strange, quieter frequency from earlier. A new baseline, perhaps.
It makes me wonder: Am I onto something? Have I begun to tap into some hidden thread of control? Not mastery, but influence?
Maybe. Maybe not. But I felt it. For once, I held the eraser. I dictated the volume. And in that moment, I realized something profound: silence, in this phase of my life, no longer means absence of sound. It means presence without torment. It’s not the silence of nothing; it’s the silence of something not screaming.
I have known for some time that my illness is stronger than me. It devours more than it offers. But today, a strange new thought followed:
It may be stronger.
The Turning Point:
But is it smarter?
That question lingered in the quiet; not just about my illness, but about the forces behind it. It was meant to be rhetorical, existential even. But suddenly, it became literal.
In a moment of casual scrolling through one of those instinctual, semi-conscious acts that chronic fatigue hasn’t entirely robbed from me, I stumbled across a headline. It mentioned Violet Affleck, daughter of Ben Affleck and Jennifer Garner, delivering a speech at the United Nations. She wasn’t there as a celebrity's child, not merely as a figurehead, but as a patient. A young woman standing at the podium, speaking clearly and boldly about long COVID; not as a temporary setback, but as an epidemic within the pandemic.
And just like that, it crystalized: this wasn’t just about me. It never was.
Her words were powerful, not because of who her parents are, but because of who she represented; us. All of us who have suffered in silence, been dismissed, misdiagnosed, ignored, and left to carry the weight of an invisible illness in a world that only believes what it can see.
She spoke about the future. About the tidal wave that’s coming of a generation debilitated, sidelined, unable to function in a society that wasn’t built to accommodate chronic illness at this scale. Her voice cut through the fog not just of my symptoms, but of the emotional numbness I had developed to survive them.
That speech lit a fuse.
I started looking. Searching. Scanning. And suddenly, like puzzle pieces dumped onto a table, things began connecting. Names emerged, public names. People I’d watched on screen, heard on the radio, read about in magazines, now speaking the same language I had been screaming into a void for years.
Emma Samms. Alyssa Milano. Lena Dunham. Justin Long. Dave Navarro. Even politicians and athletes. Some had shared their stories in interviews, others in late-night tweets that disappeared under the weight of daily scandal. But they were there. Like flare signals fired from distant islands; isolated, but undeniable.
The realization was electric. What if we connected those flares?
What if, instead of being isolated cases and whispered admissions, we created a chorus?
What if the next person with long COVID who’s lost, exhausted, terrified, didn’t just have a list of symptoms or appointments… but a list of allies?
And so, this book originally meant to be a memoir started to shift.
It became a movement. A call to action. A manifesto for visibility.
Because if the virus didn’t discriminate from subway grates to red carpets, then neither should our fight against it.
The Call to Action
This was never just a memoir. It was a message in a bottle. Now that you've read it, the message is yours too.
Long COVID is not rare. It is mass-disabling, systemically ignored, and culturally minimized. Even if you don’t have it, someone you love might, and they may not even know it yet.
This isn’t about doom. This is about voice. It’s about making this condition visible. It’s about contagious awareness.
And it starts with action.
Above, are tools that anyone; whether foggy, fatigued, or furious can use to speak up and be heard. Whether you're sharing your story, contacting a journalist, or sending a message to someone with a platform, you are part of this.
There is no movement without people. So, if you’ve made it this far, you are already the difference.
What you can do now:
Contact public figures who’ve spoken about long COVID.
Reach out to media voices who have covered the story.
Use the included templates to DM, email, or tag them.
Join support groups listed at the end of this book.
Forward this book, or parts of it, to someone who needs to understand.
Keep speaking. Keep sharing. Keep going.
We may have lost our stamina. But we haven’t lost our voices.
If long COVID changed your life, maybe it’s time we changed the world.