Growing up fast for the long-haul

Minutes before our scheduled interview, Nick S. messaged me from his home outside of Charlotte, North Carolina, the place the 18-year-old had spent most of his senior year. The pressure differences from Hurricane Ian had made Nick’s brain fog especially bad that day. “I’m sorry but I cannot handle a call right now,” he wrote to me in an email. “I’m sorry that this couldn’t be more professional.”

Instead, Nick included answers to a list of questions I had sent him the week before, when he told me long COVID had made it difficult to articulate his thoughts on the spot.

What keeps you going?

“My parents,” Nick wrote. “I’ve never been the most stable person, and my depression has worsened a lot. I would have rather just given up and died rather than having to deal with this, but my parents seem hopeful about my progress, so I guess there is no point in giving up now.”

Some two and a half years ago, on March 9, 2020, Nick and his school marching band were at Disneyland, where they were invited to play in the Main Street Electrical Parade. Only a sophomore back then, Nick was training to become the saxophones’ section leader, a role he could assume only once he reached his junior year.

Nick was hardly short on responsibilities. He was already a section leader in the orchestra, a member of the swim team and won state awards in history, helping to explain his 4.48 GPA. Part of the National Honor Society and involved with the NAACP, he had performed so highly on standardized testing, his school created a new curriculum to encourage students to reach for the same.

Long COVID changed everything.

First, Nick returned home from Disneyland with a fever. Days later, he and his mother, Diane, were diagnosed with COVID-19. Their cases emerged like many others: headaches, joint pain, the infamous loss of taste and smell. Mother and son, they attempted to push through, but quickly came to find their symptoms getting worse.

Nick’s asthma came back. Then it was orthostatic hypotension, a form of low blood pressure that made him severely lightheaded whenever he stood. Diane capitulated to her bed, beset by POTS, orthostatic intolerance and dysautonomia, with no choice but to abandon the spring gardening she always looked forward to. But nothing compared to the pain of watching her son go through it too.

“It was heartbreaking, seeing him unable to get well,” Diane, a former city elected official, said. She sometimes refers to him as Sidekick Nick, who as a 7-year-old followed her door to door while she campaigned for upcoming elections. Now, they struggled to stand. “[I thought] that maybe we might be slowly dying, and that missing school was probably not going to matter,” Diane said, adding that they were “sputtering” by the end of June.

Then, somehow, suddenly, there was hope: Nick began to improve. In the fall he returned to school, where he battled for accommodations and access to the elevator, and attended band class from the confines of a practice room, separated from the rest of his saxophones. But at least his symptoms were manageable and his improvement steady. That is, until he was reinfected with the Omicron variant in February.

Nick became bedridden. He developed POTS, the same blood circulation disorder that’s kept his mother sick in bed to this day. “Long COVID made it almost impossible to finish my senior year,” he wrote. “I had to graduate early because I was no longer well enough to take care of myself let alone learn.” Despite his plans to attend North Carolina State University, he knew after reinfection he wasn’t well enough to be out on his own.

“Being someone whose academic trajectory has been what it has been, and their career opportunities just pumped on hold this way, and watching him deal emotionally with understanding that he is now a person who has a disability,” Diane said, “it's really a lot to grapple with, on top of grappling with there's a global pandemic…and even if I get better right now, this is a permanent condition that eventually will be a big problem.”

Long COVID is grisly and elusive. It can uniquely impact anyone infected by the coronavirus, with symptoms new and ongoing, disguised and debilitating, and from personal experience, irrepressible and out of the blue. While I can’t say with certainty what causes these symptoms, though doctors hold theories based on understandings of other post-viral infections, chronic illnesses and research underway across the globe, even its name and definition vary throughout the medical community. Prominent public health agencies like the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) define it using different terms.

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What experts do know and agree upon is that long COVID, also known as long-haul COVID, chronic COVID or post-acute sequelae of SARS CoV-2 (PASC), affects even those with mild or no symptoms of COVID-19, and can attack every system in the body while hiding itself from labs, tests and imaging harnessed as tools for diagnosis. Long-haulers are hence left in the dark when it comes to recognizing or naming their symptoms, and many are discounted altogether if they were never able to prove they had COVID-19 in the first place.

Earlier this year, I went searching for long-haulers like Nick as I, too, had been experiencing symptoms similar to his for more than a year. I can hardly forget my first headache: the uninvited guest on February 6, 2021, my 21st birthday. I brushed off my lethargy that day like any other sign of so-called Zoom fatigue, until a few weeks later, when the headaches still hadn’t ceased, I called my parents to ruefully claim I needed a brain scan.

And why is that? they asked, sounding alarmed.

Yet that day on the phone, and through the months that followed, describing how I felt was like attempting to run a race with my feet tied. Memory snapped, brain fuzz disintegrating, the pressure behind my eyes obscuring the finish line. The very symptoms I sought to explain made it a twisted challenge to do exactly that. They were the dark, misgiving clouds of a rainstorm, and tracing them was to acknowledge there were no more blue skies.

At night, under sheets I dreamed were invading my skin, I stumbled into sleep by walking the same circuit of questions and epiphanies. Was the buzzing in my head all made up? Maybe I’m depressed, lonely, stressed or languishing. But why am I always tired, despite spending most of my days at home or in bed?

If I could go back in time, I would reassure myself I wasn’t alone, like I told Nick in response to his email. Over 28 million Americans – one-tenth of the U.S. population – reported having some form of long COVID as of September this year. One study suggests that as many as 52% of teens and young adults between ages 16 and 30 may develop lingering symptoms 6 months after infection. Put another way, that could mean more than 65 million young people lying awake at night. Sure, not all of them have debilitating symptoms like some you will meet in this piece, but they all share, whether suffering from a cough or loss of taste, that their lives will never be the same again.

Although it’s less likely for young people to develop long COVID, the Washington Post reported earlier this year, it doesn’t mean they won’t, or that their lives won’t be obliterated as a result. When I submitted my story to Facebook communities and support groups, I was overwhelmed by the responses I got in return. High school freshmen, college students, young people starting their first jobs — living in what we’re told are the best years of all, only worried about our future, wishing away the pain and advocating for ourselves before even knowing who we are.

When I heard of “long COVID” for the first time in March, I was shaken but hopeful. It had been over a year since my supposed infection. I was just barely scraping through my senior year of college. I had effectively cleared my schedule to sit alone at the library, where I mustered all my effort to write or read, only to catch myself staring at the book bindings along the wall. My outbox teemed with extension requests, anxiety a constant flutter in my chest. While living in a house with seven of my closest friends, I buried myself in an air of bitter longing: for graduation, for it all to end, to wake up and feel like myself again.

The scent of stuffing and roasted turkey invited a familiar feeling to the Unruh home in Hutchinson, Kansas on Thanksgiving Day 2020. But for 15-year-old Elise Unruh, the long-awaited unease of testing positive for COVID-19 spoiled any ounce of appetite.

Elise "dressing fancy" with her dog Adonis in Oct. 2022. (Photo courtesy of Elise and Heidi Unruh)

One week prior, despite having a sinus infection, Elise danced around her room and past the Van Gogh Immersive Art Exhibit poster taped on her wall, recording her moves and the voice of Wendy Williams like the spunky and salient theater aficionado she was. Music bellowed from a loudspeaker not far from boxes of crocheted clothing making a wardrobe Elise had knit entirely herself.

Her symptoms took form in a head cold, mild but unpleasant, dissipating by the end of her quarantine. But on her first day back to school, Elise could hardly finish a flight of stairs without straining to catch her breath. Eventually, overcome with dizziness, she passed out.

At home, the dizziness followed her, and Zoom classes were made even more difficult by migraines and a moldering pain to speak. From December to February, Elise gradually lost her mobility. “First she couldn't walk without assistance, then she couldn't stand up without assistance, then she couldn't sit up for much,” Heidi Unruh, Elise’s mother, remembers. There was no way of knowing that Elise would spend the next year in bed.

“There was so much going on that was wrong,” said Elise, now 17. “It wasn’t restful, it was just focus on breathing, here’s what we need to do to survive.”

Like me, you might think of any high school junior finding pleasure and praise in skipping school and sleeping the day away. Elise assured me, it wasn’t like that. It was quite the opposite, in fact: bedroom lights hovering at a dim, covers and clothes picked with precision so as not to aggravate her touch sensitivity, Elise laid in the darkness of her cocoon. Inhaling. Exhaling. Waiting and weeping.

Waiting…for what?

Elise thinks of long COVID as a waiting game. “You can be better one day, worse the next day,” she explained. “Your symptoms get better, but some symptoms get worse, but you're recovering with time, at least for my case. It's a weird, messed up waiting game to ride out the roller coaster.”

But that game felt rigged when medical professionals told Elise her symptoms were only anxiety, and that her inability to walk was due to sublimated childhood trauma. On one of her first doctor visits, they separated Elise and her parents for questioning. “What childhood trauma?” Elise asked. “They said, the fact that you don't remember the trauma means you're so traumatized that you forgot.”

It is nearly impossible for Elise and other long-haulers to avoid viewing their lives by the splice of infection. Before COVID, Elise spent her free time surrounded by friends, swimming at the local pool, dancing unapologetically in her room. She was an honors student who found joy dipping herself into extracurriculars, her favorite being her high school’s choir. And whether it was DIY crafts or centuries-old expressions of art – from acrylics on canvas to creating a cardigan out of yarn – Elise had her name written all over it.

Then suddenly, her life looked nothing the same. The energy and focus she hadn’t known she needed to draw turned arresting, hand tremors confusing the needle and thread. It was at times when Elise tried to preserve the slightest sense of normalcy, by painting or talking, that she would pass out for hours, to which no one would tell the Unruhs why.

Some of her symptoms improved when she was vaccinated in the summer of 2021, but her breathing continued to get worse. She was admitted to the hospital with chest pain in October, a week Heidi will never forget. Tests returned normal readings while doctors Googled long COVID, before sending Elise home with a wheelchair and oxygen for what would be her worst month of all.

Elise arrives in Denver for the Center for Post-COVID Care and Recovery at National Jewish Health on March 17, 2022. She has passed out in her wheelchair from the exertion of the trip. (Photo courtesy of Elise and Heidi Unruh)

“She was having episodes of breathing distress almost daily,” Heidi said. “Nobody knew what was going on and nobody knew what to do to make it better.” During the week of Thanksgiving, Elise was rushed to the emergency room twice. But from the beginning, Elise was surprised by how many doctors didn’t believe in long COVID, and by the amount of “medical gaslighting” that went on.

“It's a very isolating thing, and it completely changes the way you think about chronic illness [and] the medical system,” Elise said. “When you're growing up, you think that when you'll get sick, your doctors will be able to fix everything…It exposed a lot of ableism in people that they don’t want to acknowledge or maybe aren't even aware of.”

If Elise was surprised, Heidi was outraged.

“My view of the whole medical system was really changed, because they can't admit that they don't know,” she said. “Every time you get slapped down by a doctor, it makes going to the doctor, you feel very anxious.” But the Unruhs found relief when they visited the National Jewish Health pulmonary hospital in Denver. Elise joined a two-week day program specializing in respiratory therapy, where doctors corrected misdiagnoses, answered questions and streamlined a treatment plan through her local hospital at home.

“It just feels like every step of progress doesn't come without a struggle,” Heidi said, adding that she thinks all the time about single mothers and parents with long COVID taking care of their sick kids. “And it's hard, too, because I want Elise, she's 17, she should be living her life, and I'm mourning that she's lost these two years.”

Living her life – it’s all Elise could have ever asked for.

“I'm young, I'm a very social person, I like seeing my friends…but I'm pretty sure I got COVID from school,” Elise said. “A lot of people, they tell you to get well soon, but it's half-hearted, because they still won't wear a mask or get vaccinated. It’s like they want you to get better but then they don't do anything about all the other people in any community that are also getting sick.”

Elise's usual companions at home: her dog Adonis, cat Circe, laptop and crafts. (Photo courtesy of Elise and Heidi Unruh)

Today, in her senior year of high school, Elise attends class through a virtual academy from home. She admits hearing all the time of others at school getting long COVID. Theirs only lasts a few weeks. Still, she says, everyone likes to pretend COVID doesn’t exist. She tries to focus on better things.

“There was a time that pretty much everybody wasn't sure if I was going to make it out of it,” Elise said, her dog Adonis jumping on her bed and climbing into her lap. “Now that I'm over the hump, I don't have to take things as one day at a time anymore, which is a whole lot more fun…cooler.” For Elise, this is teenage code for “pass me the needle and thread.”

Maggie Hiles’ bedroom in Largo, Florida looks like a rainbow intersected the aisles of a pet store. Her pink-painted walls are lined with incandescent tanks filled with geckos, glow-in-the-dark guppies, betta fish and frogs, and one holding a freshwater puffer fish who goes by Swim Shady. It’s the culmination of 9-months worth of bad doctor visits and failed treatments, and more remarkably, the makings of Hiles’ at-home group of friends.

“I’m kind of maxed out right now,” said Hiles, 16.

Not that Hiles needed any more friends. At approximately 12:30 p.m. on every weekday, right as Hiles gets home from a half day of school, her phone rings with the latest lunch drama, her friends on the other end eager to share their news. After Hiles got COVID in January of 2022, being social became a sudden struggle when the daily migraines started kicking in. While some friends stopped inviting Hiles to hang out altogether, knowing she wouldn’t be able to go, she had other friends, solid ones, she said, who’ve stuck with her no matter what.

“Explaining to people is difficult, because people don't understand what long-haul COVID is,” Hiles said. “They think it's just, oh, like I have a headache once in a while. But no…you have a constant migraine where the pain level's really bad. And it's just hard to explain sometimes.”

When Hiles and I talked, she told me she had just celebrated her eight month migrainiversary — a milestone she never expected she’d reach, nor has the smallest interest in keeping up. Because as Hiles says, these migraines are agonizing. Never-ending. Profoundly intrusive. They park themselves behind her eyes, rendering lights and sensory overloads unbearable. She wakes up to them every day, awaiting their disruption of her ability to learn, to socialize and to sleep at night. So far, no medication or trip to the pet store has helped.

Hiles has been diagnosed with chronic migraine among other things. Many of the daily struggles she encounters as a result, however – finding the right words to say, memorizing sentences at school – are tied to the symptom that 65 to 85 percent of long-haulers report: headaches’ close cousin, or as The Atlantic put it, a disorder of “executive function,” known as brain fog.

Hiles' first visit to the Johns Hopkins All Children's Hospital in St. Petersburg, Fla. in Jan. 2022. (Photo courtesy of Maggie Hiles)

For anyone who hasn’t experienced it before, here’s how brain fog works: it takes unconscious mental processes, such as focusing attention or blocking out distractions, and raises them to the level of conscious decision-making so that seemingly straightforward skills — speaking, planning, multitasking, recalling information — become onerous and exhausting.

And although its name suggests clouded thinking or a psychosomatic mood change, brain fog is neither of these things, and in reality drifts far deeper. It has proved to alter the structure and chemistry of the brain, joining a constellation of cognitive impairment projected by the pandemic and viral illnesses before it. It is also part of the diagnostic criteria for myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome or ME/CFS, which Hiles and many other long-haulers now have.

Hiles was also told she has POTS, despite the first cardiologist claiming her heart palpitations were a sign of deconditioning from being in bed. “An overall awful feeling,” is how Hiles explained it. “My body was thinking I was running a marathon just from standing up.” But not only that; long COVID manifested in MCAS, setting off rashes and allergic reactions, hypermobile Ehlers-Danlos syndrome (hEDS), fibromyalgia and new daily persistent headache (NDPH). Yet while Hiles informed me about these diagnoses and her migrainiversary, I couldn’t help but think of how she didn’t show signs of being sick at all. The glow of the geckos behind her surrounding the sherbet stripes of her marching band’s color guard flag leaning in the corner only complimented the sense of optimism Hiles so effortlessly exudes.

“I tell people that it's not what you look like on the outside,” she said. “We're going, doing things, but it’s not really something that you can always see.”

Hiles at a cardiologist check-up in Tampa, Fla. soonafter starting medication for POTS. (Photo courtesy of Maggie Hiles)

Here Hiles is hitting at one of the great perplexities of long COVID’s cognitive defects — that’s their ability to remain invisible to everyone but those who are impaired. Such a grave obscurity is only compounded by the stigma that comes with mental illness, and forces young people like Hiles, at the prime of their mental lives, to do anything they can to present as normal as possible in all kinds of situations. As one might expect, this only further promotes the idea they’re less impacted than they actually are.

Now “normal” in this case may not look completely “normal,” as we as a society decide what “normal” ought to be, but it’s a small price to pay for a worthwhile goal: to leave our bedrooms, to go to school or see our friends or take a trip to the grocery store, to step out into the light. Hiles wears dark glasses anywhere she goes — including school at times — and a migraine cap at home that sits like a sock over her head. Her days begin with a strawberry-banana pineapple-coconut smoothie, where she sneaks pills into each spoonful to trick her mind into thinking she never has to take them at all.

Despite her breakfast of supplements, school remains a daily struggle. Last year Hiles’ migraines forced her to drop two of her classes, while this year she moved to half-online. Even so, her weekly assignment to memorize a Bible verse never seems to agree with her brain fog. “I can study it all I want,” Hiles said, “but sometimes, some weeks, I just can't remember. I turn it in half blank and just take the bad grade.”

At lunchtime, Hiles retreats home to the sound of her friend’s call. By then, she’s beat. “I’m just in bed for a while,” Hiles said.

“Do you typically have a migraine at that point?” I asked. Sometimes the relief of being alone or escaping the pressure to perform is enough to make the pain appear as though it’s gone.

“Yeah, always,” she said. “It’s always worse after school.”

On the days Hiles is good enough to go to band practice, she follows the same routine: showing up for the first half, coming back home to relax. It’s part of a technique known as pacing, which she learned from the doctors at the University Hospitals in Cleveland, where Hiles went for long COVID treatment last spring. I was surprised I was learning from Hiles about pacing for the first time, but thanks to her, I’ve found it enormously helpful every day since.

“They say you can’t overflow your bucket,” Hiles said. “So if you take a couple of minutes just to relax during school — like just take a minute, lay down or sit there and just relax — then it'll be harder to get to that bad point, and then it would be easier to get back to your baseline.”

Hiles wears sunglasses during marching band performances to help her light sensitivity. (Photo courtesy of Maggie Hiles)

Hiles lent me an example. When her marching band performs their halftime set of four songs, Hiles gets a break during the second, as she hides behind a prop. Maybe she pictured herself this time last year climbing the ranks from color guard to weapon line, which most other members do as juniors, but she still carries the title of guard girl with pride, even though her health has held her back. She takes nothing for granted.

“I feel like before COVID, you don't realize how valuable your health is, until you have it stripped away from you in every single way,” she said.

It’s been eight months, yet Hiles stands at the center of the football field, flaunting her flag beneath the glow of the stadium lights ahead, watching the show through the shade of her sunglasses. For the rest in the stands, her smile is all they see.

It seemed there was no one — not a doctor, his mom or dad, or Sintayehu “Taco” McKeating himself — who had any clue what could be wrong.

It all started in 2020, with a conspicuous craving for caffeine. A sophomore at the time, McKeating, now 18, chewed over ways to conserve his withering concentration. But the coffee hardly helped; he had already watched his GPA hit rock bottom. His emotions derailed, hijacked by anger. People he talked to insisted it was normal to feel this way, school being virtual and all, though his parents blamed it on laziness, procrastination even. To McKeating, his body was collapsing on itself.

Besides one day of losing his sense of smell, McKeating was asymptomatic when he tested positive for COVID in 2020. (Photo courtesy of Sintayehu McKeating)

The following year was when the physical symptoms came in full swing. McKeating remembers the muscle pain most of all — the sound of his body crackling against the quiet of the morning, the feeling like he’d been hit by a train. Others he would get used to with regimented routines — fainting following headaches, hot flashes oscillating nauseous waves; spasms along his legs, wrists, eyelashes and lips; his right foot would shake, fighting a constant urge to kick. For months, McKeating operated on two to three hours of sleep. He dreamt of himself flying, until the insomnia would settle back in. His body tilted into sleep wherever he went.

A case of shingles brought McKeating to the doctor, after his parents spotted it across his neck. They ran tests, but what truly tipped them off was his shortness of breath.

“There was this moment where I was walking down my street, the same street that I used to be able to run for hours on,” McKeating said. “That’s when my world just started shaking. I doubted myself. I didn’t think I’d be able to get back to my house at that point, because my heart was racing, skipping beats. I felt like I couldn’t breathe, like something was suffocating me. And then, all of a sudden, it would just stop. Then it would come and go, come and go.”

I felt a sort of connection in listening to McKeating’s story, for many reasons but especially that of seeing my experience in his very own. He has carried the weight of this illness through the most transformative years of his life so far, without knowing what it was or how it landed on his shoulders. How could he have known his weakness or irritability was the result of COVID-19, which besides losing his smell one day freshman year he was asymptomatic for? His high school years have been shaped into a study of symptoms new and old, which has turned out to be a far greater challenge than the lessons he’s learned before.

“Everytime I found a tool or a strategy to overcome that other thing, the next week that pain would double,” McKeating said. “It would find ways to get gradually worse.”

McKeating was adopted from Ethiopia when he was six-years-old, and moved to Houston, Texas, and then Atlanta, Georgia, where he’s lived ever since. Twelve years after leaving the country where he was born, McKeating was afraid of the person long COVID made him believe he’d become.

First, it was emotional, then it was physical. Now, it’s mental.

McKeating lost motivation for what he once loved, like practicing with the soccer team he joined the year before, now only a daily reminder of the energy he lacked compared to his friends. He turned off his phone to refrain from messages and calls.

“You can't just tell them, hey, I have long COVID, because nobody knows what that is. And when you say you have COVID, people are scared of you.” Instead, he avoided telling anyone anything at all.

Much like his condition, McKeating mastered the duality to exist and disappear. “I'd be at school, completely exhausted, not able to really walk, finding little holes to hide in.” It became impossible to imagine a future where long COVID wouldn’t ruin the rest of his life.

Inside the Galen Center in Downtown Los Angeles, on a basketball court adorned in cardinal and gold, is where Rayah Marshall feels at home. Her six-foot four-inch figure shrouds her sophomore standing, supplying dunks and fast-break layups to Marshall’s countless ferocious finishes. Since the 19-year-old joined the USC Women’s Basketball team ahead of its 2021 season, she’s gotten COVID twice. The first case came amid summer workouts freshman year, and she was sent into a 10-day quarantine she faintly remembers for foggy eyes and shortness of breath.

So when Marshall tested positive again in May of this year, she thought little of it. Lingering symptoms were something she had heard of, and had watched her younger sister face, but not until months post-infection, when she was rushed to the emergency room with a tightening chest, did she believe it could happen to her.

Doctors ran an echocardiogram, CT scan and MRI of Marshall’s chest. Everything looked normal. Her game, on the other hand, was everything but.

During a running test one practice, Marshall was gassed by the third set. Come the fourth, she could hardly breathe.

“This is so unlike myself. I'm actually an athlete, like these things come naturally easily for me,” Marshall said, like I needed convincing. Marshall’s not just an athlete; she made the all-freshman and all-defensive teams during her standout freshman season, and was chosen this year as one of USC’s “21 Athletes,” a campaign that highlights players whose faces and numbers become representative of their teams.

Marshall was determined to finish the test. Her trainer was eventually able to convince her to sit down. Soon after that practice, Marshall received her diagnosis for long COVID. The conditions of her treatment – to limit her conditioning – left her “frustrated and disturbed.” To make matters worse, her mind became occupied by the fear of losing her breath, stealing her focus from play and toward preserving her energy. Anxiety and overthinking became bigger than the worst rivalry.

“This year was supposed to be a blow up year for me,” Marshall said. “I'm kind of worried now going into the season, because I hope this doesn't affect me long term.”

Past Figueroa and down Hoover, a senior at USC scooters to and from class. The brain fog that followed his first bout with COVID in 2020 felt hauntingly similar to 13 concussions he endured in high school. His motor function was poor and he couldn’t form sentences. This time, however, there was no improvement.

“I began to think there was something wrong with me,” the 22-year-old wrote to me in an email. He is being granted anonymity because he is afraid that his illness will affect the way he's treated at school. “Being around people, even my close friends, became a nightmare where I had a vision of myself and who I was that no matter how much I willed myself I couldn't reach.”

The senior took a gap year and gave up his dream of graduating with his college friends. He moved out of state and worked at a ski resort, away from anyone he knew and expectations of the person he used to be.

“Because of my symptoms, I withdrew into myself…I couldn’t look at the shell of myself that I was,” he added.

“What would you tell someone who doesn't understand long COVID, or dismisses it?” I wrote back.

“I still don’t know,” he replied. “I never would have believed it if it didn’t happen to me.”

Morgan Stephens had long imagined chasing down politicians, reporting on elections and sticking it to the president with the hard-hitting questions. Her moment had finally come during the 2020 presidential election, as she was just starting a job at CNN. Six months after earning her dual degree in journalism and political science from USC, Stephens, 30, the first in her family to graduate college, couldn’t have been more ready to shine.

Morgan Stephens on her first day back at CNN after her relapse with COVID in June. (Photo courtesy of Morgan Stephens)

The political spotlight Stephens stepped into that November looked different from what her dreams had been made of. For one, Stephens was working remotely from her parents’ home in North Carolina. And, it would all come to a screeching stop when Stephens came down with a mild to moderate acute case of COVID-19.

Stephens sits on the floor of her new home in Washington D.C., the one she and her husband moved to recently. She is still a production assistant for “Erin Burnett OutFront” at CNN, yet she is not the Morgan she used to be. Wrapped in a waffle robe the color of earthy green, she’s fresh off a call with her writing coach, who doubles as her hypnotist – an unlikely yet clever combination considering the road Stephens trekked to get here.

As the leaves of the trees outside her window have transcended into oranges and reds, Stephens has been writing the manuscript of a memoir about her experience with long COVID, which she hopes will be published in the next few years. The book, she tells me, goes into intimate detail of her darkest days in the winter of 2020 and 2021, including the months her family kept her alive, and the night they were on suicide watch. She’s writing, too, about her interactions with doctors at the time, and of her path toward healing, which took a turn for the worse after a relapse in June.

It won’t be the first time Stephens decides to share her story publicly. She wrote an opinion piece for CNN in July 2021 titled, “Eight months of long Covid brought me to the brink.” In it she lays out the myriad of symptoms that shrunk her existence to survival, while raising critical questions about the research and mental health care that still lags behind.

The night I first read Stephens’ article is ingrained in my mind. I was in bed at my grandmother’s not far from school, where I fled on my most defeated days. As I finished the article, albeit at a noticeably snail-like pace, for the first time in a long time, I began to cry. And immediately knew — I had it too. Stephens’ multi-system symptoms rhymed with my own, revealing I wasn’t alone. I’ll never know how long I would have lived on with my symptoms, or if without Stephens, I would have reached my breaking point.

At 32, Stephens feels an obligation to come forward with her last two years. She believes our generations, millennials and Gen Z, will undoubtedly bear the brunt of the pandemic’s consequences, which include but goes beyond this disease. Young people, therefore, have a responsibility and opportunity to shift our approach on health care, disability policy and even our social safety net. And it starts with individual steps.

Stephens undergoes an IV infusion at home. (Photo courtesy of Morgan Stephens)

Stephens knew it wouldn't be easy talking about her struggles with mental illness, and while she knows the power that comes with telling her truth, she still experiences anxiety about what it might mean for her down the road; a road, she points out, that has yet to be explored.

“There's no one who's written this book before. There's no one who's lived this experience before. We are the first people to do it,” Stephens said. “Getting comfortable with that uncertainty and being okay suffering, that is a profound lesson.”

Stephens recalled a particularly hellish day she had earlier in the week of our interview. Two years into the storm, she had faith that hell would end. But being able to accept the present moment, however bad it is, takes practice.

“We do not like uncertainty,” Stephens said. “We like answers. We like knowledge. We like planning and organizing. And long COVID throws all of that out the window.”

By sharing more of her story, Stephens wants for other long-haulers to have something to relate to, and for everyone else, to try to understand. Before she was sick, Stephens described herself as a freight train. Anyone who knew her could attest to the level at which she worked, to her unstoppable energy. She moved to L.A. for acting at 19, and returned to school six years later with the dream of becoming a journalist, to then graduate top of her class and land a job at CNN. Until she lost it all.

Stephens in the Brady Press Briefing Room at the White House in 2019. (Photo courtesy of Morgan Stephens)

“It's hard to see people that I went to school with doing what I thought I was going to be doing, or should have been doing, or worked really, really hard to be doing,” she said. “To have that taken away through illness has been a challenge.”

Stephens turns to meditation, which between the supplements, medications and therapies she’s tried, is the one she finds most healing. She knows it won’t cure her long COVID on its own, but it can help her get through a day, like it pulled her out from a three-month crisis mode.

“Long COVID takes away so much from a person. It takes away your health, it takes away your finances, it takes away what makes you you,” Stephens said. “If something positive can come out of the type-A overachiever who was going to stick it to the president, ask him the real tough questions…” Her voice trails off.

“Maybe I will ask them some tough questions. They will be just different questions than I thought.”

This story is one that has no end. Because for every long-hauler I spoke with, their stories don’t finish here — and neither do the millions that have yet to be told.

Nick asked me not to use his full name, because even he knows there’s a future waiting for him. He’s spent most of his gap year in bed, like his mom, but medication and physical therapy help alleviate his symptoms, and he’s at a few thousand steps per day.

Elise discovered a passion in advocating for others, and says she feels more in-tune with her body than ever before. While the spokes of her wheelchair have taken on gradients of yarn, Heidi published two books she wrote sitting at her daughter’s bedside. The Unruhs take each day as it comes.

By now Hiles has seen her 11-month migrainiversary, but with a newfound interest in medicine and an aquarium that lights up her bedroom walls. Her marching band made it to state finals this year, for the first time in 22 years. She performed a solo, with her sunglasses on.

When sleep and motivation were hard to come by, McKeating held on to the belief he would succeed. After months of extra training, Marshall retook that running test recently, and finished it. The senior from USC stays active and listens to his body; and on days when progress feels impossibly slow, he looks to a vision of who he wants to be, and if that’s not enough, then his dog.

Stephens is making her peace with having a different impact on the world than she thought. It takes strength and courage to share your story, and in doing so, she shed light into the darkness of whom she didn’t know.

My hope here is to do the same.

By the end of this year, I will have graduated college, an accomplishment that means much more to me now than it ever did at the start. And after I will continue charting this uncertain road, knowing what I’m meant to find will also find me, even if my long COVID is never completely gone. Rather than longing for a feeling of what once was, I will follow the second sunrise that leads us all to healing, where we can see ourselves for who we are becoming, and for all that we already are.