Watching the Wheels Come Off

Kate Burke

It was going on for some time before I could see it.

I first noticed it when I was listening to my co-counsel Elizabeth speak during a Zoom hearing. Elizabeth and I were attorneys working for stricter state rules on oil and gas to protect the environment and the public from pollution, disruption, and accidents. It was September 2020 and COVID-19 had pushed a long state agency hearing to Zoom, a platform many of us were still getting used to. My client was the Boulder County government in Colorado, and on its behalf I sat at my computer as the hearing went on for weeks upon weeks. This particular day was right in the middle. As I listened to brilliant, savvy Elizabeth answer a complicated question, time suddenly stretched and drooped like warm taffy. I stopped hearing what she was saying and got stuck on what she was doing. I casually wondered how she could build her ideas and also find the words to express them at the same time. Then I was marveling at how rapidly she came up with her answers. Soon I was gaping at every micro-move: in the tiniest shred of a second, she had to decode the commissioner’s words to understand the question, run through her database of knowledge for possible answers, consider her audience and her client’s goals to choose the best answer, shape the elements of her answer to be understandable, collect the words and syntax to convey the message, edit all of it to get the most effective language, and, finally, deliver her answer with poise. The complexity of it terrified me and seemed impossible. I couldn’t pull my attention from the mental acrobatics behind simply conversing, and I was scared I wouldn’t be able to pull it off when it was my turn. Somehow I got through my part in the hearing, but I was never the same.

On that day, I didn’t realize the personal significance of this insight. Only much later, after years of ongoing illness and a lot of time observing my symptoms and patterns, would I understand that on that day I was seeing how my encounter with COVID-19 was dismantling the intricate mental machinery that I had taken for granted.

Months before that day on Zoom, starting in March, I had been sick for an unprecedented six weeks with what everyone around me presumed was COVID-19. There was no testing back then, at the very start of the US experience of COVID, but I had all the hallmarks—chest pressure, shortness of breath, a heavy dry cough, intense fatigue, crazy temperature fluctuations. And six weeks? As a healthy, active, fifty-six-year-old woman, I had never been sick for more than two weeks at my worst. I lived with my husband and our horses, cows, chickens, and dogs in the rugged mountains of southwestern Colorado and considered myself pretty tough. But the heavy weeks just dragged on. Finally, I began to feel better as May rolled in. I thought, “OK, my bout with COVID is over and no harm done,” and spent that summer as I always do—working on my rural property, playing music with friends, riding my horses through the mountains, working with my county team to avoid the worst impacts of oil and gas drilling.

But in the midst of the endless hearing in September, I began to feel more exhausted than even that Zoom nightmare would warrant. At the point when I fell into the strange trance watching Elizabeth, all the symptoms from the spring were coming back—ultimately, they took me under for another six weeks. My chaotic blood pressure, low blood oxygen, and falling pulse rate scared me. My husband, an EMT, hovered over me, watching the results of our pulse oximeter and blood pressure cuff. After some attempts at telehealth, neither of us were satisfied, so I reluctantly went to the ER. It seemed like overkill, and like I’d be taking a bed from someone in worse shape, but the anxiety was getting to be too much. They swabbed and bled me for everything they could think of, hooked me to an EKG, and X-rayed my lungs. All normal, the doctor announced. It must be COVID-19, she said, and sent me home. But my COVID tests came back negative.

I slowly recovered, again, taking a long break from work over the winter holidays to replenish. By this time, stories were emerging of COVID patients having ongoing problems—the “long haulers.” Despite my negative COVID results over the previous months, we all, including the doctors, assumed I was one of them. I read with gloom about COVID causing permanent damage to lungs, hearts, and vascular systems.

In January, the oil and gas commission resumed its Dickensian hearings. I was feeling better and had posted notes around the house reminding me to take it easy and slow. Taking full advantage of the new, all-remote work world, I was able to participate in the hearing in sweatpants and cradling cups of tea, taking nap breaks when needed. But my efforts didn’t work. In the middle of January, the symptoms returned. My symptoms were less intense, but I couldn’t shake the fear that there was damage happening in my heart or lungs. Back I went to the ER for more scanning and poking, and this time a lung CT that showed a mild infection—the first time anything at all had shown up. “This is consistent with COVID,” the new doctor said, despite my negative test results (yet again), and he referred me to a pulmonologist for follow-up.

In the next several months, I gave pints of blood for testing, performed functional and stress tests for my heart and lungs, went through more scans, saw a new GP, an allergist, a pulmonologist. No one could find anything wrong with me. I was feeling better by March, and the mild lung infection was clear by the time of the next scan, and nothing else turned up. By the summer, greatly relieved that my heart and lungs seemed to have weathered the storm, I still crept carefully around my life. Terrified of another relapse, I forced myself to rest after every walk with the dog or short ride on a horse. I took naps whenever I felt the slightest inclination. I was able to keep up with my chores around home but deferred any larger project or adventure. Luckily, we lived a quiet life—I was beginning to worry about leaving my husband in the lurch while I became an invalid, but the big picture of our life didn’t change much, only the rhythm of my days. I was frequently glad we had no small children at home.

By the end of the year, I was approaching normal for the third time. Gingerly, over the summer, I had managed to get out with my horses, visited with friends, and in the late fall even started to do tiny workouts. Then, on December 30, a devastating wildfire tore through Boulder County, destroying over a thousand homes and buildings. The images of destruction in familiar neighborhoods were agonizing. I jumped into the county’s disaster response, juggling the calls of desperate, traumatized residents alongside a constant flow of text and email alerts, all while flipping through web pages searching for anything that might help the callers. It was exhausting but satisfying. Yet I kept getting pesky little illnesses all through January. For a few days every week I felt sick. Was it a little cold? Some kind of allergy? Too much sugar or not enough caffeine? I batted them away for weeks until I couldn’t—the little bouts finally coalesced and brought me down in the old familiar way for another several weeks.

This fourth time, I knew the medical establishment had nothing more to test or offer. I was on my own. Desperate to do something and feel a semblance of control, I started looking for patterns in my symptoms. I tracked them in a daily planner, comparing the major events of each day with a rating— good (how I would want to feel), OK (not the best but within normal operating parameters), meh (not very good), or crash (the full slate of symptoms). A strange pattern immediately showed itself. A day or two after some kind of exertion—a workout, moving hay bales—I would get sick. The gap of time between the action and reaction was strange but consistent. I turned to Google, expecting little from such a weird pattern, but I got a decisive hit: post-exertional malaise.

PEM’s peculiar feature is the time lag between an expenditure of energy and resulting symptoms. The symptoms are flu-like rather than simple overwork, and are often out of proportion to their triggers, lasting days to months or more. I was surprised and oddly comforted that this crazy pattern was known and noted. But PEM is only associated with one thing, something that set off a dismal tolling in my mind: chronic fatigue syndrome. In fact, it is one of the strongest diagnostics for CFS (properly known as myalgic encephalomyelitis, “painful swollen brain” in Greek, or ME/CFS). Like most people, I had heard of ME/CFS in passing—a strange and undefinable illness that struck people seemingly at random, an illness that the world had a hard time believing in or taking seriously.

Though the patterns of ME/CFS have been observed for at least two hundred years, the medical establishment only recognized it as a stand-alone phenomenon in the late 1980s. Despite decades of research since then, no precise disease mechanism or reliable treatment has been found. Because of the enigma of the syndrome, patients have always faced, and continue to face, dismissive attitudes from doctors and social stigma. At best, as my GP would later tell me, even compassionate doctors’ hearts sink at the thought of ME/CFS because they know so little about it and have nothing to offer for treatment.

We don’t know whether ME/CFS comes from dysfunction in the energy-producing mitochondria, or autoimmune inflammation in the nervous system, or pockets of retained virus getting reactivated, or all of those, or something else altogether. But we can certainly observe the symptoms, of which PEM is the gold standard. And we know that ME/CFS often—but not always—arises after a serious viral infection.

By the time of my fourth round of illness, long COVID had been identified as a syndrome affecting millions. Like ME/CFS, the mechanisms—and therefore treatment—remained elusive. Also like ME/CFS, long COVID was an idiosyncratic syndrome, manifesting differently in different people. It ravaged lungs or hearts here, caused chronic pain there, sometimes impaired breathing, often caused “brain fog.” While researchers were scrambling to identify the microbiology of it, I told myself long COVID was simply ME/CFS after a COVID infection, and assumed it would behave the same way.

In fact, when I finally pressed my GP for a diagnosis, her fingers hesitated over the keyboard. I was planning to take a long leave from work to see if I could really improve and needed a diagnosis to support the paperwork. Over two years, we had ruled out every reasonable cause of my symptoms. She could call it ME/CFS because I met the criteria, or she could call it long COVID because that fit, too. We talked about the neurologist she had referred me to, who refused to even see me because they “didn’t touch long COVID.” She was concerned the COVID label would foreclose my treatment options if doctors were going to be scared of it. But I was afraid calling it ME/CFS might keep me out of potential clinical trials in the furor to study long COVID. So she settled on the more ambiguous “post-viral syndrome.”

I more often tell people I have long COVID than ME/CFS, which I feel kind of bad about. There is an instant recognition and even a kind of intrigue with the one phrase that the other lacks. It’s unfounded and unfair, but there it is. In fact, I have turned repeatedly to the ME/CFS community for information and help in managing my illness. Over the decades, ME/CFS patients and doctors have done a lot of exploration and experimentation, and they have found some protocols helpful and outright rejected others.

Whatever its name, the recognition that I had a chronic illness rather than a series of disconnected problems was a very tough pill to swallow. Like many long COVID and ME/CFS sufferers, a large part of my self-concept had always circled around strength, competence, and resilience. Now I had to absorb that I had much less of all those things than I had before. Casting around for support, I found the work of Patricia Fennell, a therapist who specializes in helping people with the emotional experience of chronic illness. She describes four phases: crisis (falling sick); stabilization (oh, I feel better now, until I don’t and I fall back into crisis); resolution (oh my God, this is actually a chronic illness); and integration (moving forward and making a satisfying life under new conditions). She describes the resolution phase aptly as a dark night of the soul. I can attest it is very dark—in there I faced the loss of who I had been and the recognition that I had entered that shadowy realm of the frustratingly, stubbornly ill.

A 2005 study found that 5 percent of ME/CFS patients fully recover. Only 5 percent. Anecdotally, there are reports closer to 40 percent, but even then the prognosis is sad. I sadly assumed long COVID would go the same way. But I did find stories of people who had recovered from ME/CFS. Their methods differed, but there was a strong common thread—they strictly managed their energy output to avoid any crashes. For a very long time—years, decades. And it worked, sometimes.

As I combed my symptom tracker to identify my energy limits, a new pattern jumped out at me. I had thought PEM was triggered by physical activity and had limited myself accordingly, but now I saw crashes often followed involved conversations on Zoom. Looking back, I realized that all three of my recurrences happened during and after weeks-long Zoom hearings or the multitasking and emotional maelstrom of the fire response effort. I got my ears and eyes checked, thinking maybe it was an audio or visual problem, but they were fine. I arranged with my work team to limit my time on Zoom, but that only helped a little, sometimes. Soon I saw that telephone and in-person conversations could also cause crashes. Later I would add comparison shopping, quick decision-making, and any type of multitasking. All of these mundane mental tasks had become triggers for PEM.

Seeing this new pattern, if I was going to avoid crashing, I had to mow down my life in a deeper way. Not only workouts and labor on the homestead were out, but also lengthy meetings and hearings. Most socializing was out, as were travel and noisy environments. Just as the rest of the world was reopening, mine was closing in.

With this new focus on my brain, a friend found and sent me an article about a woman with very similar experiences to mine who benefitted from a battery of neuropsychological testing. After a COVID infection, she found her executive functions were impaired, especially something called working memory—the ultra-short-term memory that allows you to hold words and concepts in your head while you analyze them and develop responses, or to hold several options in your head while you compare and contrast them to make a choice. The effects of COVID on her working memory made it impossible for her to work, even though the rest of her cognition was sound. And I perked up to read that the test results were enough to support her qualification for disability benefits.

The idea of disability had been lurking in my mind. My job as an attorney was inescapably brain oriented. Though I was keeping up with ideas, and reading and writing seemed to be okay, if I couldn’t participate in complex meetings and hearings, I might not be able to carry on. I might find myself needing disability benefits. Yet I knew from my reading that people suffering from ME/CFS had a notoriously difficult time qualifying for benefits, so this woman’s story was hopeful. Grimly, I set about getting a neuropsych evaluation of my own.

It took many months, but I finally got in for the daylong set of tests. When the report came back, my working memory scores were several standard deviations lower than my other cognitive scores, just like the woman in the article, and I showed trouble with attention and focus. I felt both vindicated and saddened—this was for real. In his report, the psychiatrist opined that I probably had ADHD and spent no time discussing post-viral or long COVID issues. He acknowledged that my slowed processing speed was probably distressing for me, but wrote that, overall, I did not meet the criteria for a mild cognitive impairment.

Through all the long months of testing, I had often felt an incongruous disappointment when my results were good. I wanted the doctors to find something wrong to explain what was happening and to justify the way my life was crumbling. As a lawyer, I was also keenly aware that other, more cold-blooded people—insurance adjusters, HR representatives—might read this report and conclude that I was “just” a depressed middle-aged woman with ADHD. Not that depression and ADHD are trifles, but they don’t often support disability benefits.

Much too often, ME/CFS and other chronic illness patients, especially women, are dismissed and disbelieved by doctors. Having walked this path myself, I know the harm done—in violation of the Hippocratic Oath—by healthcare workers who won’t or can’t understand what you’re trying to tell them. Other than getting flatly rejected by the neurologist, I only experienced compassion from doctors. But the fact is they had no idea what to do with me, and even that hurt and discouraged me. Twice, doctors read to me from packaged materials suggesting treatments that had been roundly rejected as useless and even harmful by the ME/CFS community, such as graduated exercise therapy and the use of steroids. I attended one post-COVID specialized clinic and looked into another and found that, for someone without cardiac or pulmonary problems, they offered nothing that a Google search could not do. My husband wryly told me that, by then, I knew more about my condition than most doctors. While I read articles about researchers who leaned in to the long COVID mystery, general practitioners with busy caseloads seemed to shrink from its challenges. And that shrinking came off as, like my psychiatrist’s report, avoiding or ignoring the main subject.

Recently, as I focus on my ongoing cognitive effects and my receding respiratory ones, I’ve found another specialized area that may have more to offer me. From the start of my illness, my friend Carol had been a great source of understanding and helpful information. She suffered a traumatic brain injury some years ago, and we had quickly noted the commonalities in our experiences—the out-of-proportion crashes after doing normal tasks, the susceptibility to overstimulation, the inability to follow complex conversation. Only lately have researchers started reporting the notable similarities between post-COVID brain and traumatic brain injury. Scans of post-COVID brains are showing physical damage—gray matter shrinkage, degradation and destruction of neuronal cells, dysfunction in the brain’s vascular system. Brain injuries from viral activity are called “acquired,” rather than “traumatic,” but they behave in much the same way. I like to think that Carol and I saw this connection before the experts did. As I write this, I’m preparing to seek treatment at a clinic that has studied and treated post-concussive disorders for decades and recently opened its doors to long COVID and post-viral patients after finding the injuries to be so similar. They have stepped affirmatively into this new area, and I’m hopeful.

There is nothing “foggy” about my brain impairment. It is not gentle or soft. It’s sometimes electric and jarring, sometimes sickening and disorienting. It’s more like a sleet storm at night on a wild sea. It shows up in two main ways—the acute and the reactive.

In the acute version, I will be in a conversation or meeting, all going normally, and then a circuit will trip. Sometimes it feels violent and sparky and makes my eyes twitch; other times it’s just the lights going out. I can no longer take in what is being said. I understand the words and get their gist, but I need much too long to parse through them. If asked a question, I feel lost and confused, as if searching frantically for a scrap of paper on a cluttered desk under time pressure. If I can come up with an answering thought at all, I have to scrounge for the words to express it and often don’t find them. At these terrifying moments, I feel frustrated and ashamed, making me ultra-irritated. I want to scream at whoever is talking to me, shove their words back where they came from, and run from the room. But I spend more precious energy to restrain myself.

Other times, it comes in reaction to something that seemed OK at the time but wasn’t. I engage in a mentally complex task that is either fascinating or important, like a long, involved horseback riding lesson or a legislative hearing. If my brain starts to slip, I unconsciously fight back, marshaling every shred of energy to get through it because I’m too interested or it’s too high profile not to. Afterward, I think I’ve done fine, but then PEM hits a day or two later. Along with the overwhelming fatigue, sore throat, body aches and so on, I feel dizzy and removed, as if I’m wearing a 1950s-era diving helmet filled with chilly, gelatinous fluid. I feel a bit queasy and usually have tinnitus and a tingly scalp. The slightest request for cognitive activity—my husband asking me a simple question, or trying to follow a recipe—feels like an assault. I can only huddle until it passes.

Between my ailing brain and PEM, I am now disabled. I hesitate to say so, knowing how much worse off many people are, but the dictionary defines disabled as “having a physical or mental condition that limits movements, senses, or activities,” and that’s me. I may look fine, and sound normal a lot of the time, but I can only do that for limited periods.

Invisible disabilities have unique challenges. The invisibly disabled bear the constant burden of explaining to the world that there is something different about them and elaborating on exactly what that difference is. In my case, that burden presses on the very function that is broken—expressing myself orally and fielding questions. My disability can be invisible even to me—I still sometimes wonder if I’m making it up or bringing it on myself somehow.

Not only is my disability hidden inside my skull, it is capricious and confusing. I can function at a normal level for the duration of a single meeting or conversation sometimes, and all day other times. Because of my people-pleasing, slightly neurotic nature, I make sure to appear to function normally more often and longer than I probably should. I don’t always know what limits to set, since some work sometimes and others work other times. And even when I set a limit, I have a hard time sticking to it, which must be confusing to those around me.

Then there’s the social weirdness. Because I can only explain myself in words like fatigue and forgetfulness, or the tired phrase “brain fog,” people believe they can relate. Oh yeah, they say, I’m tired all the time, too, or I hate meetings and can’t find words either. I know they say this to forge a connection, or to show empathy, or to normalize my experience. But not only do these comments fail in their goals, they hurt. I feel like the speaker hasn’t heard me, hasn’t comprehended the scope of what I’m saying. And I wonder if they think I’m a massive whiner to have made such a fuss about something they believe they also experience. I also resent the chipper comment that I’ll surely recover soon. Again, I understand the impulse to instill hope and optimism, but it lands hard. I’ve been at this for more than three years and I’ve worked hard to reach a level of acceptance to avoid the damaging roller coaster of hope and disappointment. Other people don’t seem ready for that acceptance. And won’t they think I’ve failed, or just get heartily sick of me, if I don’t do what they predict? It’s all exhausting.

We have systems for illness. Doctors find the problem and treat it. Friends and family go into care mode, offering sympathy, food, encouraging messages. It is deeply ingrained to respond so—Margaret Mead believed that the earliest relics showing human culture are not art or tools but broken bones that have healed, proving that others tended the injured one until the bone knit itself, and separating those distant ancestors from their nonhuman relatives. These systems usually work beautifully, but they break down when the patient neither gets better nor dies. Doctors get frustrated and become alienated and alienating. Friends and family get confused and burnt out. The whole situation is repellent. I was very sad to read a recent article from the BBC suggesting that, after a flare of attention and research, both long COVID and ME/CFS, with their sufferers, are starting to fade back into the shadows as progress on diagnosis and treatment remains elusive.

Despite everything, I’m very lucky among “those similarly situated,” as we say in the law. I have maintained a lot of my life. I work remotely and have flexible work routines and understanding supervisors, so have kept 75 percent of my job and income. I have a fully supportive spouse and some amazing friends who give me precious gifts—a sense of normalcy and patience when I bail on plans, set a timer on our get-togethers, or send whiny texts on a bad day. I love them for it and sometimes wonder just how long they will put up with it. I’m able to putter around my property and ride my horses and I’m not letting anyone down in a major way. I’ve never been so glad to be an introvert who finds her greatest pleasures with nature and animals, pleasures which haven’t been lost to me. And my long interest in mindfulness practices prepared me to remain somewhat dispassionate while watching my world disassemble itself. I use mindfulness meditation and practices from yoga and Ayurveda to calm my system, rest my brain, and keep my mitochondria nourished. Learning to live a smaller life and build in more profound rest, I’m finally rating more than half of my days as good or OK.

One ME/CFS patient who achieved full recovery called the mental state he adopted “acceptance with a fighting spirit.” A constant cycle of inflated hope and disappointment is unhealthy on many levels, but neither can we live in full resignation. I accept that my brain is not what it was and may never be, and that PEM is always lurking in the wings, even while I try to maintain a spirited hope that things can improve. At the very least, I have tools that will make today more pleasant, and possibly tomorrow too, so I may as well keep at it.

Kate Burke lives in the Rocky Mountains of Southwest Colorado. Her essays have appeared in Fine Lines Journal, The Avalon Review, and others.