Living With Post-COVID-19 Is a Thru-Hike Across the Unknown

A few years ago, I completed a 220-plus mile solo thru-hike on the Colorado Trail during one of the state’s wettest monsoon seasons.

On one arduous 60-mile segment of the trail, a thin singletrack scribbles above the treeline of the San Juan mountains and crests at the trail’s 13,271 foot highpoint. Trekking the section on bluebird days is idyllic. Streams tumble down wildflower gullies and pikas leap across the tundra with tiny bouquets of forget-me-nots clasped tightly in their jaws. But when afternoon thunderheads charge across the sky like big horn rams, the heavenly stretch becomes hellacious.

One morning in July while walking the segment, I found myself in the clouds. I was unable to see the sharp summits of the nearby Grenadier Range, let alone more than a trekking pole’s length in front of me. The fog settled on my mind that day as I made miles across the tundra without seeing another soul. That night, I reluctantly set up camp at 12,500 feet and went to sleep in the eerie mist. I woke hours later to an unforecasted thunderstorm ravaging the high country. My hair stood on end and I felt a violent electricity circulating through my body. I remember thinking, This is it.

The Corona Trail: The world’s most frightening new thru-hike. It switchbacks for a seeming eternity like the foggy, hail-pelted section I walked on the Colorado Trail.

I hadn’t experienced that same sense of impending doom I felt in my tent that night until I came down with symptoms of COVID-19 that hit me like a lightning bolt one afternoon in mid-April.

I am one of (possibly) over a million COVID long-haulers in the U.S., a subset of relatively young patients who have been diagnosed with a debilitating post-viral syndrome of COVID-19 for months, some nearing their 7th or 8th month of symptoms. During my first flare up, a wicked electricity scorched my muscles and nerves. I had a rapid heart rate, fever, lightheadedness, and my oxygen levels plummeted. I felt like I had been simultaneously injected with a high dose of epinephrine and shot in the back with a powerful tranquilizer.

The flare up was the first of many over the course of the next few months and was just one of over 35 symptoms I’ve logged since coming down with the illness four months ago. Over the course of my experience with Long COVID, I’ve experienced daily headaches, lightheadedness, painful body aches, fevers, cold sweats, hypertension, tachycardia, muscle twitching, hallucinations, delirium, fainting, hypnic jerks, and a variety of other terrifying symptoms.

The most constant symptom however, has been a debilitating fatigue so profound, I feel I’ve been caught in a rockslide and the weight of an entire mountain is keeping me from my life. I watch others pass me on the trail, wave, and summit nearby peaks. While many of my symptoms wax and wane, they’ve kept me from doing anything more than light exercise while the heavy brain fog has greatly impacted my ability to read, write, and concentrate. In The Great Before, I was a fit 27-year-old backpacker, hiker, and rock climber.

Though the World Health Organization and CDC have not validated the illness with a name, some researchers and medical professionals call it Post-COVID Syndrome, though many of us suffering from it call it Long COVID and ourselves long-haulers. The CDC recently acknowledged that one in five young adults aged 18-34 weren’t back to “usual” health 14-21 days after testing positive.

Many long-haulers began our journeys alone following a very different trajectory than those who were hospitalized. We self isolated for months not knowing if we were contagious. And we struggled alone through flare ups that felt like strokes and heart attacks. Many of us have been gaslit by our doctors and misdiagnosed with anxiety due to non-existent, delayed, or inaccurate COVID-19 testing. In a study by the Body Politic, only 23% of long haulers tested positive for the virus. As a result, the patient-led study of 640 long haulers concluded that “current testing practices are not capturing a large subset of COVID-19 patients.”

These testing failures have left many of us further in the wild, as we search endlessly to rule out other illnesses from autoimmune diseases to Lyme disease to rare fungal infections like Valley fever. Nearly all of these tests come back negative—our blood work shockingly healthy. We long-haulers have found ourselves on an involuntary journey that has no map, guidebook, or mileage markers. Many of us don’t even know where the hell we’re hiking. It is truly a long, lonely trek across the unknown. The Corona Trail: The world’s most frightening new thru-hike. Something Andrew Skurka wouldn’t even dream of attempting. It switchbacks for a seeming eternity like the foggy, hail-pelted section I walked on the Colorado Trail.

Without a map, we have been forced to rely exclusively on the beta of fellow long-haulers who became sick weeks or months before us. We’ve found each other in support groups on Slack, Facebook, and Reddit. We update one another by leaving notes tied to virtual rock cairns and ask each other for daily information on what’s ahead. We walk the non-linear trail in infinite directions as if we’re sheep wandering the tundra without herding dogs. There are days we are northbound and days we are southbound—other days we walk to hell and back. Our trail doesn’t terminate in a finite place like Denver or Durango, nor does it climb the knife edge to the summit of Mt. Katahdin.

I think of other thru-hikers I’ve met on my trek on the Corona Trail like Cole Newcomb, a 29-year-old skier and outdoor enthusiast from Ketchum, Idaho, who contracted the virus in late March when Sun Valley had one of the country’s highest infection rates. Five months later, Newcomb continues to struggle with fatigue, heart palpitations, shortness of breath, and loss of taste and smell. I also think of Jenna Bruce from my Facebook support group “Long Haul Covid Fighters,” a 32-year-old health coach and backpacker from Colorado Springs, Colorado, who was barely able to climb the stairs in her home during the beginning of her illness. Five months later, she still experiences chest pain, hand tremors, and body aches that feel like “lead” in her arms and legs.

Although we long-haulers are new to this landscape, we are able to learn from the many others who have been walking akin trails. From patients who still struggle with symptoms 18 years later from SARS (another coronavirus) to patients with Myalgic Encephalomyelitis (ME) and Postural Orthostatic Tachycardia Syndrome (POTS)—many of which have also been failed by our healthcare system. Because of their knowledge and courage, we tramp this thru hike in their boot prints and gather knowledge that gradually or temporarily lifts the clouds around us. Some days—even if it’s just for an afternoon— we can see the bluebird sky.

Many long haulers share the frustrations of seeing the United States go on as if we—and the 750,000 who have lost their lives to COVID-19 globally— don’t exist as some refuse to wear masks and distance. We ask our families, friends, employers, and doctors to believe us. We ask our lawmakers, governments, and health care systems to view COVID-19 not only as a violent killer, but also as a virus whose lasting effects may debilitate millions of young and otherwise healthy individuals.

Most days I feel caught in my rockslide of fatigue. I live a miniature version of my own life and feel like a stump of my former self. As my world has grown smaller, cloudier, and more uncertain, I am brought to tears by small beauties. I’ve noticed the many trail angels of my life who’ve shown up unexpectedly and right when I needed them most. On days where I am able to pry myself from the rockslide, I walk among the high country hoping to find a trailhead near a road where I can finally throw up a thumb and ditch this godforsaken hike. And of course, a little trail magic wouldn’t hurt either.