The Long Haul
By Lygia Navarro
Photo illustrations by Nuance
I
My world is 640 square feet. I spend most days on my bed, propped up by pillows, my legs covered with a wool blanket to stanch the pain. From my windows, all I can see are a row of gingkoes, a dozen condo high-rises, and open sky. On a lucky day, there will be snow, or an orange sunset, or a red-tailed hawk floating on warm currents hunting for prey.
A decade ago when I moved to Canada, I felt the world expand. In Toronto, I found a new culture to decipher, a community pulsating with immigrants, summers filled with outdoor art events, everything within walking distance, a lake so expansive it almost made up for the intolerable distance from any ocean, and all the libraries, museums, parks, and zoos a family with a small child could ever want.
My husband and I had our hardships, and there were times when those hardships overpowered us. But our lives were full. We were young, and we were building something. Working toward a future.
Now I rarely let myself think of those Before Times. Describing what was once my life is like trying to recapture a sensation, a place that only ever existed in a dream.
What strikes me as most unreal are the memories my mind holds of my body—when I could still walk and swim and stand upright. In this remembering is a deeply burrowed sadness, a sorrow that comes not from nostalgia over what my body was, but from wishing I had enjoyed so much more fully what are luxuries now: sharing life with friends and family, the joys of travel, spending time in nature, the simple act of taking my child to the park.
Yet what I mourn most, more than moving my body with ease or even leaving my apartment, is my lost faith in humanity. What I have been forced to witness, I cannot unsee. Bodies like mine, lives like mine are the future, and we are forsaken and ignored precisely because of that truth. We represent what most of the world does not want to recognize as possible: The pandemic is still here. And it may yet come for you.
• • • •
I checked case counts on my phone every morning as soon as my eyes opened. March 2020, the early days of the fear-blurred nightmare. Healthcare workers forced to choose who to let die and who to try to save. Morgue trucks parked outside overflowing hospitals. But this was also a time of togetherness. When we were all in it for each other. Remember the staccato symphonies as we banged on pots and pans for frontline workers, cheering out open windows? We were, and desired to be, linked to strangers, bound by our collective care and impotence to do anything else to help. I worried, we all worried, about everyone we loved, across cities, countries, oceans. We went into lockdown and wore masks and taught ourselves that peculiar skill of showing our togetherness by keeping six feet apart. All, we agreed, to protect society’s most vulnerable.
A few weeks after the Friday the 13th when kindergarten closed and the world changed, my child’s diarrhea began. Meanwhile, governments urged us not to wear masks, in a secret chess game to keep hospitals stocked with PPE. I couldn’t bear to isolate from my feverish five-year-old. So I put my child, who I’ll call K, in my bed for a few nights, as I’d long done whenever K was sick. K’s symptoms matched coronavirus to a tee, but without testing available, we couldn’t be sure. So we all isolated for the nine days K was ill, plus another two weeks.
The rest of our 2020 was smoother than for so many. As others died, buried loved ones, became severely ill, lost jobs, and marched to protest the murder of George Floyd, my husband was able to work from home and I took care of K. Many felt the loneliness and pain of separation. I grew up in an abusive home, so I was prepared for chaos. For upheaval. For isolation. My husband and I had long since learned to rely on each other and safeguard our world. We found a house with a backyard to rent. I spent the most time outdoors since childhood, as K and I tended vegetables, flowers, and tomatoes. The sunshine and gardening and quiet were a balm. Even as so many people were coming completely undone, I felt calmer than I had in years.
• • • •
Eight and a half months after K’s probable Covid-19 infection came January 6, 2021. I barely ate all day, glued to the news. When I woke the next morning, depleted, I assumed it was from watching my home country being ripped apart on live TV. But my fatigue never subsided.
All day, every day, for weeks, and then months, I felt steamrolled, no matter how much I slept. Standing for even a few minutes made me so lightheaded that I couldn’t cook or take a shower. I couldn’t think clearly, much less read or write. The slightest exertion left me breathless; some days I couldn’t even breathe lying down. My legs burned, and soon I could only walk as far as the bathroom. My husband brought me my meals in bed. For all of 2020, I was the one who ventured into the world—for every grocery run, every pharmacy pickup—because my husband has asthma. Now I was helpless.
Later, my memories of this time would largely be a void. Despite sleeping more than usual at night, I napped for hours every afternoon, K stretched beside me reading, just to be close. While there was still snow on the ground, I sat in the backyard, slouched deep into my parka in a folding camp chair, watching K play. I only managed this once.
As the weeks dragged on, my doctor ordered dozens of tests, including a PCR test. All came back normal. I was lucky, though: my doctor was stumped but never said it was all in my head, and her desire to help, even when she couldn’t, was a comfort. The not knowing, suspended in a cocoon of uncertainty, was terrifying, and I was consumed by guilt. My husband was now responsible for every task, on top of working a job with long hours. I wondered if I was too much of a burden to be alive.
K was so lonely. After virtual school was a disaster, we decided to homeschool, but I was always exhausted, beyond exhausted. K lobbied hard for a pet, desperate for a playmate. My husband and I agreed: Our lives were already too much to manage. No pet.
How I yearned for our old life. When K was born, I took a long parenting leave, and we became each other’s favorite company, a perfectly synched dyad. Now all I wanted, every single day, was to cry.
On rare occasions, I gave in to this urge, but the drain of sobbing left me worse off for hours, sometimes days. Most of the time I held it together. For K. In the semi-conscious fog of my afternoon naps, my legs aching, I repeated to myself all I would do if I could ever move again: I will walk, I told myself. Ice skate. Hike. Bike. Swim. Dance.
• • • •
On the day of our first Covid-19 shot in April 2021, I was so breathless, lightheaded, and weak that I couldn’t stand up in line. Eventually someone brought me a chair. I was just past 40, but my body felt as if I were in my 90s.
The next day, I intuited a burgeoning miracle. It began with my legs. All of a sudden, after months of daily pain, they no longer hurt. I sat outside in the garden for the first time after so long in bed, as news articles about Covid long-haulers whose illness improved or disappeared after receiving vaccines flashed through my mind. As the days went by, I continued to feel healthier. Several days in, it dawned on me that I was strong enough to jump, after months of not being able to stand. I jumped and jumped at the joy of this.
Two weeks after my shot, in this unexpected rebirth, I felt as well as I had in December 2020. My doctors—and there were many by then—agreed that I must have had an asymptomatic case of Covid-19 when K was ill in April 2020, and, eight months later, I developed long Covid.
Knowing little about the illness, I assumed the drastic improvement meant I was cured. I dived into replanting my garden and playing outside with K.
I thought I had my life back.
II
By the time I became ill in early January 2021, millions of people around the world had already begun to display symptoms of long Covid, some for more than a year. As early as March 2020, researchers in Wuhan had identified a segment of Covid-19 patients with lingering effects of the illness well after the two weeks we were told was the norm. Later that spring, patients coined the phrases “long haul Covid” and “long Covid,” as they struggled to be taken seriously by a medical establishment that kept insisting they should have recovered by now.
These original long-haulers—many still ill today—banded together, combining their expertise in computer programming, human-computer interaction, neuroscience, community organizing, public policy, social work, and other fields. In the absence of medical or government assistance, they created online patient-led organizations—similar to 1980s and 1990s-era AIDS activist organizations like ACT UP—to support each other and advocate for action.
From the beginning, one thing was clear: the majority, around 80 percent, of long-haulers are women (and people assigned female at birth), often in our 30s, 40s, and 50s. In the United States, an outsized portion are women of color—but it would take nearly three years for the federal government to start to minimally acknowledge this fact. (Stats on race and long Covid are still estimations, but the Census Bureau has found Latinx, African American, and Indigenous people are most likely to develop long Covid.) Early in the pandemic, women of color were denied care during acute Covid infections, with hospitals calling security or the police on them in emergency rooms. As long Covid set in, they were disbelieved or ignored.
The official story has been that long Covid is a new, mysterious, and therefore still incomprehensible illness—all of which is simply untrue. More than a century of medical science has told this same story, of the unlucky few who never recovered from viral or other infectious illnesses. It happened after the 1918 flu and after polio. It happened following Ebola, West Nile virus, and SARS in 2003. The narrative has always been that some sufferers are too weak, or simply too weak-willed, to return to their former lives. The truth is much more complicated.
You’ve probably heard of chronic fatigue syndrome, which leaves sufferers too unwell to go about their daily lives. People with the illness detest that term, with its conjuring of Victorian women beset by hysteria, and prefer the British name Myalgic Encephalomyelitis, or ME/CFS, as it’s often abbreviated. Here again: ME/CFS largely affects women, with women of color more likely to be afflicted, though infinitely less likely to be diagnosed. Like long Covid, ME/CFS has neither treatment nor cure, and is likely rooted in a combination of immune dysfunction and other undiagnosed causes. Its impact on sufferers is starker than end-stage renal disease, HIV, or breast cancer. ME/CFS patients’ quality of life is worse than that of people who suffer strokes, heart attacks, long-term mental illness, or chronic obstructive pulmonary disease. Just a quarter are able to work, and there are an estimated 17 to 24 million people worldwide with ME/CFS, around 90 percent of whom are undiagnosed. Recovery is exceedingly rare.
Despite those dire outcomes, most medical schools do not even teach about the disease. ME/CFS belongs to a category with a hideous name: “contested illnesses,” that is, illnesses which some medical professionals believe are a sham. But now, as pandemic research funds are slowly being disbursed, study after study shows similarities between ME/CFS and long Covid. In both, patients’ hearts do not recover from exertion, instead appearing as if in heart failure the day after exercise. Sufferers have blood clotting which doesn’t show up on available medical tests, and immune system dysregulation. Yet the National Institutes of Health has refused to fund long Covid research on these biomarkers, instead putting money into research of treatments already debunked as contraindicated or even harmful to people with ME/CFS.
If not for decades of medical disinterest in post-infectious illnesses such as ME/CFS, long Covid might have been treatable from the get-go. The only consolation, and an especially bitter one, is that now, as the number of Covid long-haulers explodes, people like me will provide an ideal population for future research.
• • • •
Following my magical recovery, my family returned to our pandemic-era normal. Every day, I felt a whole-body rush of relief, an exhilaration of having been pulled from a rank, tortuous prison to bask in a flowery meadow under a cloudless sky. Being with friends and being part of a community once again felt glorious.
By then, I’d been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a heart condition common in people with ME/CFS and long Covid. POTS was the cause of much of my discomfort. Through some unknown mechanism, the nerves carrying messages through my central nervous system failed, and when I stood up, my heart rate skyrocketed, making me breathless. Simultaneously, my blood pressure dropped and my veins dilated, leaving my rapidly beating heart struggling to pump blood from my legs up, causing lightheadedness. Fortunately, medication mostly kept this at bay.
We continued being cautious, still always masking and distancing and only meeting friends outside. When my symptoms gradually crept back, I dismissed them as a nuisance. I’d lived through the worst of long Covid, I thought, and could handle the return of some minimal discomfort as the effects of the vaccine seemed to wane. By mid-July, I needed a folding stool to sit down from time to time when out. But I could still go out.
“In the semi-conscious fog of my afternoon naps, my legs aching, I repeated to myself all I would do if I could ever move again: I will walk, I told myself. Ice skate. Hike. Bike. Swim. Dance.”
That fall, we bought our first home—the tiny condo where I am now moored—a few blocks from K’s school. We still held onto a fierce hope of an exit from the pandemic then, and assumed K would be safe to return to class once fully vaccinated. I imagined K walking to school alone in a few years, a march toward independence. But every day, I was less and less independent myself, my heart condition making standing up so challenging that I needed a stool to shower now and an electric scooter to take K two blocks to the park.
Then came Omicron, a fast-spreading strain of Covid-19 touted as less deadly. I knew this new messaging would mean needless infections, turning millions into long-haulers. While governments and media downplayed the risk, I teetered for weeks on the precipice of a panic attack. I sent off an op-ed on long Covid to Canada’s top news outlet. “We’ve covered this topic,” they responded, declining the piece.
Article after article quoted the same doctors saying that we needed to “learn to live with Covid.” On the last day of 2021, the conservative head of our province stopped PCR testing and case-reporting in schools—permanently dashing our illusions that school would be safe for K. Then, a few days after 2022 began, a pain in my side bloomed, so sharp I couldn’t sleep.
Why, oh why, can I not stop time here? Why can I not spare my family the destruction of our lives? Why didn’t I stay home, instead of going for an ultrasound with the technician in her blue surgical mask? After all, I already knew the sensation of kidney stones from the past, didn’t I? Was confirmation of stones—in both kidneys, this go-round—worth the terror that would descend upon me all over again?
• • • •
At first, I thought I’d overexerted myself in the snow with K and a friend. But everything was far, far worse. Back rushed the bone-crushing exhaustion, leaving me bedridden. My heart went haywire, and walking the twenty feet to the bathroom became a grueling journey again. Anything requiring my brain was arduous: I couldn’t read, I forgot words and names, and when I tried to watch TV, I had to use subtitles to understand the dialogue. The shortness of breath, the deep aching in my legs, all of my symptoms were now turbo-charged.
It didn’t occur to me to take a home Covid test until a doctor suggested one, weeks after onset, when it was already too late. The physician was convinced I had a new infection, and her certainty brought more clues to mind: my most painful period in years, the three weeks straight of full night sweats, my hair falling out. Again. I was the absolute sickest I had ever been in my life, and a heavy, sinister darkness gripped me. When I told friends about being so ill, some never responded, including close friends. The rare times I let myself cry—when K was asleep or I just couldn’t hold it in any more—my body would not stop.
In late February 2022, I left my apartment for the first time in weeks for blood tests. Standing in line at the lab, I thought I might collapse, and the lack of space for social distancing in the waiting room terrified me. Outside, on the streets, people headed to work, to meet friends, living their lives, while I struggled home to our never-ending lockdown. When I made it into bed, I sobbed. “The world has forgotten us,” I forced out when my alarmed husband rushed in. K came to join us, scared and sad.
The effect of my illness on K ripped at my heart. I couldn’t play, or read, or do much of anything. “Mama’s too tired,” I said many days. Others, “My legs hurt too much.” I couldn’t take K outside to play. And after work, cooking, cleaning, and caring for us both, my husband only had energy to take K to the park once a weekend. I couldn’t help wondering, would it be easier for them without me? I didn’t want to die, but being alive was punishing.
In the coming weeks, I began to comprehend: I was now disabled. Through a long Covid clinic, I was receiving speech therapy for cognitive challenges, occupational therapy to help me navigate my home with my body’s new limitations, and meetings with a social worker for support. Physical therapy was deemed too taxing for me after I attempted a simple pelvic stretch and ended up with excruciating pain for two weeks. The therapists agreed: Rest, rest, rest, they said. They wished they could do more, but soon the clinic discharged me. There were too many new patients.
As winter turned wanly to spring, I understood that nothing was the same. Showering, even seated, left me feeling as if I had just run five marathons. Sex, on the very rare occasions we attempted it, left me gasping so forcefully for air that I cried from fear. There was so much wrapped up in learning to live with disability, in my emotional relationship to my own body. Mostly I felt profound loss, since there was no assurance I would ever recover.
The grief, too, felt insurmountable, as I lost all illusions of getting better. There was still no treatment, and neither Canada nor the United States had even put together a coalition to research, much less fight, long Covid. So many of us long-haulers had never had a positive PCR test, which made it easier for governments and health officials to pretend long Covid was far from threatening—or that we long-haulers didn’t even exist. (This also allowed them to deny us disability benefits and health care.) Any optimism evaporated, and I grew convinced my career was over. Before parenthood, I was a freelance journalist, chasing down stories on human smuggling, black-market drugs, climate change and migration in Latin America and across the United States. How could I be a reporter, I wondered, if I couldn’t even walk to my bathroom?
About this time, K drew blueprints for a time machine—to go back to before I got sick.
III
Decades earlier, I watched as my grandmother reached her 80s and then 90s, gradually adjusting to the loss of her physical abilities. Like most relatively healthy people, I’d assumed my body would follow a similar trajectory of robust health until my old age. My first wheelchair, a simple transfer chair, was just like my grandmother’s. Was this why I couldn’t abide being pushed in it? Was my memory too fresh of pushing her from her assisted-living bedroom so she could warm in the sun, marvel at flowers (every one of which she knew by name), and feel the wind on her face? Being pushed in this chair, even by my husband, made me feel too vulnerable. I spent weeks battling with insurance to get an electric wheelchair; it was exhausting and humiliating. Meanwhile, Google’s top trending result for long Covid was now: “Is long Covid real?”
Amid the sixth Covid-19 wave, I snagged a part-time remote job producing a podcast. Adapting was rough; the first two Sundays after less than 20-hour weeks, I was so drained I spent all day crying in bed. But the return to the field I love was a welcome distraction. Over the next several months, I was given more responsibility, until some weeks I worked twice as much as my contract, far more than I should have. Is this another point where I pushed myself too much, when I should have rested more? But having no retirement plan, and being ineligible for disability benefits in Canada or the United States because of being self-employed, makes this an impossible calculation. If we are too ill to work, but we cannot survive financially—now or in the future—without working, what are we to do?
In April, the Biden administration ended masking on planes, and flight attendants and passengers flung off their masks, midflight, and cheered. While we could drive, with great effort, to see my family in the US, my in-laws live in the Caribbean. When would it ever be safe to fly to see them again? Then there was my wheelchair. The Department of Transportation’s own statistics show: US airlines break 29 of them every day, and my insurance would not replace it if damaged.
Still, I ached to travel, to be outside. In waking fantasies, I returned to my favorite places. The island off Sardinia, where I ate fresh pasta with sea urchin roe and swam topless. The Yukon, where I taught K to love hiking and spotted a grizzly bear. The foggy beaches and scorching mountain rivers of my Northern California adolescence.
By the end of May 2022, nearly everyone we knew had now had Covid.
• • • •
My oldest friend texted to offer her Long Island cottage near the beach for a month so K could be outside. We had been so isolated for so long that this generosity and kindness felt greater than I remembered possible. The exertion of the drive was awful, but the effort was worth it. On the weekends, my friend and her husband came from Brooklyn for outdoor visits of bocce, long lunches, and a lazy togetherness I’d missed for many years. My friend told my husband how impressed she was with him for taking care of K and me without a single complaint. He shrugged it off. He was just doing what he had to. But it made me feel less alone, to know that she saw what all of us were going through.
“I ached to travel, to be outside. In waking fantasies, I returned to my favorite places. The island off Sardinia, where I ate fresh pasta with sea urchin roe and swam topless. The Yukon, where I taught K to love hiking and spotted a grizzly bear. The foggy beaches and scorching mountain rivers of my Northern California adolescence.”
