Confessions of a Long Hauler: Three Months in

My husband and I waited in the parking lot at the Chiricahua Community Health Infectious Disease Center in Bisbee, Arizona for our COVID-19 test results. It was a gorgeous day, yet we remained in the car lost in our own thoughts until the nurse approached and handed me a piece of paper. “I’m sorry. You’ve tested positive for the virus. Please contact your doctor immediately.”

This was March 1st, a year after we learned the truth and the lives we had been living were altered forever. I had made breakfast for my brother and sister-in-law earlier that morning and couldn’t taste the plum jam on my toast or the fruit in my yogurt. I knew the results of the test before the nurse crossed the parking lot. Ron and I sat in the car staring out the window. My imagination swan-dived into a dark abyss punctuated by the cries of an annoyed mockingbird perched on a juniper branch in the empty lot next to the clinic. Oh. My. God.

The virus had found a new host. I was contaminated, infected by something I couldn’t see and had feared for over a year. I slid deeper into the dark hole taking with me guilt for possibly infecting friends and family, shame for not protecting myself better, and fear that I may die. Grasping for a lifeline, I turned to my husband. “We need to make a list of people I’ve been in contact with.”

Ron drove east toward our ranch as I cataloged names on the back of a discarded envelope before calling folks. Friends and family offered words of encouragement. Others said they would pray for us. None of it made me feel better. How could people be so kind knowing that I may have infected them?  

Our doctor was sympathetic but had few answers to my many questions. In the end, I was to stay quarantined for ten days, drink plenty of fluids and get myself to a hospital if things took a turn for the worse. Also, and this was important, if I had any symptoms after ten days, I should remain in isolation at home.

It’s been three months, and I still have symptoms. I experience fatigue, brain fog, chills, muscle pain, and continued loss of taste and smell. There are also symptoms that take me by surprise; the outlanders of the disease hellbent on holding me hostage: leg pain, dry mouth, mouth sores, rash, and headaches. But what worries me most are the changes in the things that make me me. I exist in a kind of itchy melancholy when exhaustion takes hold each day around noon. Long bike rides and hikes are on hold for now. The loss of taste and smell has me questioning the quality of the food I make. Thoughts are jumbled, and ideas are lost when I simply look up from my laptop screen to catch a glimpse of a quail on the fence or a rabbit in the yard. I am on the edge of my old self holding on wondering when things will get better, easier.

Years ago, I was living in a small farming community up in the mountains in central Honduras when cholera struck after the military turned off the water source. This kind of sabotage is called low-impact warfare and is taught at the Western Hemisphere of Security, formally the School of the Americas. It is a tactic in which a government creates a problem, like shutting off water to a pueblito where farmers were organizing for land rights, leaving people no choice but to use a contaminated local river for bathing, laundry, and cooking. Many got sick and some died before the military returned to the village and restored water access. Psychologically, this kind of warfare has a powerful effect. People were so grateful to have water, collective amnesia set in, and villagers forgot who created the problem in the first place. Message received, a twisted dependency was created, and farmers went back to business as usual, abandoning discussions of land ownership.

A small one-room, white-washed adobe home with concrete floors at the edge of town was donated by an elderly couple for the duration of the cholera outbreak. A doctor was summoned to the village where he trained community healthcare workers and volunteers like me to care for patients. Cholera is a messy, contagious disease that causes severe diarrhea and vomiting. Sick people flooded our makeshift clinic where we administered fluids and electrolytes intravenously to stave off deadly dehydration. The village was miles from any power plant. To sterilize equipment, cholera beds and bedding, we boiled water over fires. We tended to patients in the shadows of oil-filled lanterns at night and opened doors and windows during the day, praying for a breeze in the sticky heat. Those too sick to travel suffered at home while family members took shifts to keep their loved ones clean and comfortable.

Several weeks passed as we worked around the clock to save lives. Hollow, scared eyes of villagers lined the porch. Some fell to their knees. Curled up on the concrete, their moaning filled the house with desperation. Our desperation to work harder. Faster.

When it was over, people stepped from their homes into the sunshine stunned. It was easy to spot those who had succumbed to cholera. Gray skin hung from their bones like weathered leather. Their weary, sunken eyes carried in them remnants of fear and disbelief. Even infected children looked as though they had traveled deep into the netherworld, emerging wise beyond their years.

Cholera transformed the village. Many of those who lost family members remained cloistered in their homes, grief acting as a barrier. We watched men, women, and children who survived with open curiosity. Even though clean water now ran from our pipes, we had witnessed the destruction dirty river water had brought to the community. The survivors were reminders, talismans of suffering. They were simultaneously victims and messengers. Don’t kill the messenger we had to remind ourselves. In our fear of getting sick, we lost compassion for those recovering.

I wonder how long COVID patients will fare. People are waking like bears from a long, dark winter. Hibernation over, we are in search of sunshine, food, and connection. Mask mandates are being lifted as restaurants discard plexiglass to make room for customers. A record number of travelers since the pandemic began took to the friendly skies Memorial Day weekend while millions traveled by car to sporting events, beaches, and backyard BBQs. Yet many of us are still tethered to symptoms; one foot in the past as we struggle to move forward.

I have witnessed this intersection where medicine and science scramble for answers and doctors are left perplexed and frustrated. Where, in the end, patients become a burden in a system that is not equipped to help—a kind of medical purgatory. For years I have wrestled with a myriad of symptoms brought on by malaria and later Lyme disease. When tests are inconclusive and a physician is baffled, I am sent to a specialist. I have often downplayed my symptoms so not to be singled out as someone with a problem or worse, someone to be pitied. Over the years, I have adapted to the rhythms of my body and the demands of each disease. I am aware that illness and exhaustion has changed me. Dreams and ambitions are no match for chronic fatigue.  

We are in the infancy of COVID-19 and have yet to begin understanding long-term symptoms. Employers and the economy will be shaped by a workforce dealing with health issues. Doctors and mental health professionals will face new challenges. Our compassion will be tested as medicine and science desperately search for cures.

I recently dreamed I was paging through The Catcher in the Rye by J.D. Salinger for lessons revealed in a scene where the protagonist, Holden, a rebellious sixteen-year-old boy, is counseled by his old teacher, Mr. Antolini:

Among other things, you’ll find that you’re not the first person who was ever confused and frightened and even sickened by human behavior. You’re by no means alone on that score, you’ll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now. Happily, some of them kept records of their troubles. You’ll learn from them—if you want to. Just as someday, if you have something to offer, someone will learn something from you. It’s a beautiful reciprocal arrangement. And it isn’t education. It’s history. It’s poetry.

I’m doing okay morally and spiritually. But when I’m too tired to make a meal or walk the dogs, I reach out to people who understand. Salinger was right. As I grapple to make sense of COVID-19 and lingering symptoms, sharing my experiences with others who are struggling is a “beautiful, reciprocal arrangement”. 

5 thoughts on “Confessions of a Long Hauler: Three Months in

  1. Absolutely beautiful ❤️. Thanks for sharing yourself. This means so very much to me. I have always been with you during these times and will be there for you in your future. You can count on me. You are a strong , fantastic woman. I love you. Peace. Mom

  2. Oh, Beth. I’m so very sorry. I know a number of people who contracted this disease. Some were fortunate and were mildly ill. Some were long haulers. A few are gone.
    I’m glad you’re pushing your way through and delighted with the way you were able to record it.

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