How novelist Mark Haddon found his way through brain fog

Mark Haddon has always been a runner, and a solitary one. “Running for me is a profound, borderline spiritual experience, but I have to be in green spaces away from other people. I need water, I need trees, I need nature,” says the British novelist, best known for The Curious Incident of the Dog in the Night-Time.

So, when his long runs started getting harder, faster than age could explain, he paid attention. One doctor told him it would probably sort itself out. He sought a second opinion, and a series of tests showed severely narrowed cardiac arteries; in 2019, he underwent triple bypass surgery. “In a way, the running saved my life,” he says. “If I hadn’t been a runner, those arteries may have narrowed and narrowed until I just fell over in the supermarket.”

His body returned to normal quickly; he was gently jogging and cycling within six weeks of surgery. But his brain did not. “Everything was foggy, everything was slowed down,” he says. “The odd thing was how out of sync it was with my physical recovery.”

Haddon’s primary care doctor offered a simpler framework. “He said that among his patients there is what he calls a ‘magic year’,” Haddon recalls. “He says there’s no scientific basis for it whatsoever, but a lot of his patients who’ve had major surgery or chemotherapy experienced that fog for about a year. And he was pretty much right. At the end of the year it seemed to lift, and my brain was briefly returned to me. I could read and write and think in the way I remembered from before.”

That’s a common trajectory, Dr. Becker says. “The brain recovers alongside the rest of the body. After any major illness or surgery, it’s not unusual to feel a little bit slower, more forgetful, even more easily overwhelmed. For many of those people, symptoms do improve over time.” She recommends that if you’re not back to your baseline within about six months, or things are getting worse, ask for a neuropsychological evaluation.

Brain fog after long COVID

Haddon thought he had put the brain fog behind him, but then came his COVID-19 infection. Twice. After his second infection, the fog descended again, this time with the physical exhaustion and stamina problems of long COVID. Long COVID is a condition which causes some people to continue to experience COVID-19 symptoms or develop new health problems after their COVID-19 infection. These symptoms can affect the brain, lungs, heart, or other parts of the body and can make everyday activities more difficult.

To describe the effect of long COVID on the brain, Haddon borrows a metaphor from a friend of a friend who had undergone chemotherapy. “She said that inside her mind, there used to be a dining table. She could see the whole table, arrange many objects on it, and move them all around in relation to one another. After chemo, the table shrunk to a tiny bedside table. She could only put three things on it. If she put a new thing on it, one of the objects fell off the back, and she forgot what it was.”

That is close to what neuropsychological testing actually finds in long COVID, Dr. Becker says. “The areas most impacted are the speed at which we process information, our ability to pay attention for long periods of time, and executive functioning, which is sort of like the CEO of the brain that helps us solve complex problems, make decisions, and multitask.” Patients often say their memory has gone, she says. “But what we see is that the problem isn’t exactly in memory functioning, but rather in the ability to organize the information around them. That’s what’s impacting their memory.”

Anastasia Vishnevetsky, MD, MPH, a neurologist at Mass General Brigham and instructor in neurology at Harvard Medical School, starts every brain fog visit by making sure it isn’t something else. “Brain fog is a really commonly used term these days, but still very nonspecific,” she says. Recently, one patient with word-finding trouble turned out to have a neurodegenerative disease, “even though she believed, and her physicians believed for a while, that she had long COVID.”

So, what is happening inside the brain when the fog really is long COVID? That remains largely unknown, Dr. Vishnevetsky says, noting that small studies have found signs of neuroinflammation and altered blood flow, but nothing is ready for clinical use. “We all have a sick response that’s separate from any individual illness. If you have to do your normal work when you have the flu, your mind’s just not working right,” she says. “I’ve heard patients describe long COVID as like having the flu, except without the sore throat, runny nose, and cough. You sound like yourself, but you’re mentally not able to do the things you otherwise would be able to do.”

That shrunken working memory struck at the center of Haddon’s identity as a novelist. “I’d rather smugly always said to myself: I’m a writer. Your knees might no longer work, you lose all your hair, but you can still write. Of course, the same thing can happen to your brain,” he says. “There is something about writing that fundamentally needs a large processing memory. You want to have a sense of how changing a few words here affects the end of the paragraph, the end of the page, the end of the entire book.”

Brain fog is invisible—as Haddon says, “You haven’t got a cast on your leg to show people,”—and for him at least, a big enough adrenaline rush can temporarily banish it. When he’s on stage at public events, and during his volunteer shifts answering calls for Samaritans, the UK crisis line, the fog temporarily disappears. “For that three-and-three-quarter-hour shift on the phone, I never felt the fog. At the end of a shift, I would think, I’m great. And then in the 20 minutes it took me to drive home, the fog would come down again,” he says. “With adrenaline, it’s like taking out a bank loan. You can take out a certain amount, but it needs paying back.”

The second half of that pattern, the crash, is one of the best-described features of long COVID. “Post-exertional malaise can be triggered not only by physical exertion but also by emotional triggers, and not only negative emotions but strong emotions in any direction. I’ve had a patient who gets really exhausted after hanging out with friends and laughing a lot,” Dr. Vishnevetsky says. “When we talk about an adrenaline rush, we’re really saying there’s activation of the sympathetic nervous system, the fight-or-flight system. Being up on stage sends it into overdrive, and that seems to be what triggers the crash for him.”

Dr. Becker sees the same crash after ordinary good days, when patients try to clear every errand at once. “People have to be careful not to try to capitalize on those good days all at once,” she says.

Living with long COVID

Haddon was concerned that there might not be an equivalent of small steps for a writer. What Dr. Vishnevetsky tells her patients, many of them former high performers like Haddon, is to listen to their bodies in a different way than they used to and stay well within their limits.

“Pacing is a hard thing to talk about, because it’s an acknowledgment of just how radically different their lives are from what they were like before,” she says. “But I actually find that what I can say to patients is less helpful than what they’ve already learned. Patients are often experts on how to pace themselves in their own individual ways.”

Dr. Becker explains pacing as energy management rather than avoidance. “Think of your mental energy like a battery. Instead of waiting until you’re completely drained, you recharge it throughout the day,” she says. “Take planned breaks. Do your hardest thinking when you have the most energy. Write things down instead of trying to remember everything.”

What Haddon discovered was that not all of his creative abilities were equally affected. His ability to recall words was damaged, but pictures were not. “I’m very good at imagining three-dimensional objects,” he says. “It was intensely pleasurable to make things in my mind’s eye—shape them, turn them, rotate them—because you can hold one object and operate on that one object. You don’t have to think months, years, pages ahead. And that gave me a way of feeling creative and putting something out in the world.”

So, he turned to sculpture and visual art and eventually created an illustrated memoir, Leaving Home, written in fragments, almost all under a page long. “Two wonderful things happened. Without me thinking about it, the structure sorted itself out. And that concision turned out to be the perfect recipe for cutting out sentimentality.”

Neuropsychological testing can help identify specific individual workarounds like that, Dr. Becker says. “What we can do is see where their strengths and weaknesses are, and how we can leverage those strengths to help them compensate for the weaknesses.” Haddon’s particular split, words impaired and images spared, was new to Dr. Vishnevetsky, but half of it was very familiar. “If I ask patients to describe what they experience with their brain fog, word-finding difficulty comes out over and over again. I’ve never counseled patients to use those kinds of alternative techniques, but based on what he had to say, I might start asking whether they’ve experienced the same thing.”

Ways to manage brain fog after long COVID

Haddon jokes that he has become one of the world’s experts on the placebo effect, having tried nearly everything for his long COVID—including, recently, a remedy he calls “slightly bonkers” and declines to name until he’s sure it’s working. Whatever the mechanism, he is running again and writing 500 to 1,000 words a day. “If it is the placebo effect, I’m surfing that wave as far as I can,” he says.

Dr. Vishnevetsky would rather her patients hear where the science genuinely stands than pursue a false promise. “There’s a lot of hope and research into different mechanisms and different types of supplements or treatments. But there’s fundamentally not a gold-standard, evidence-based clinical treatment targeted for long COVID…” she says. What exists is symptomatic treatment, much of it borrowed from sleep medicine and pain management. She recommends finding a doctor who is willing to try symptomatic treatment in a safe, understanding, and patient-centered way.

And Dr. Becker warns about the cumulative effects of too many medications. “The polypharmacy in long COVID is really extreme sometimes,” she says. “Make sure anything you take is specifically prescribed or recommended in the context of all of the other supplements and medications. Too much of a good thing can be not good too.”

There are far too few long COVID specialists to see everyone who needs one, Dr. Vishnevetsky says, and that doctor doesn’t have to be a specialist. “As someone people come to as an expert, I might have more experience, but I fundamentally don’t have the answer,” she says. “It’s about being willing to work with you and keep at it, not just say, ‘We have nothing to offer.’ Any good primary care provider or any good neurologist could be that person for you.”

Dr. Becker asks patients to change how they keep score. “Recovery is dynamic. I don’t think it’s always an upward trajectory,” she says. “One of the things I hear most often is people saying, ‘The old me would have done X, Y, and Z, and the new me can’t do that.’ That’s a really powerful existential message to tell yourself over and over again.” Instead, she encourages her patients to measure their recovery in weeks and months, not against who they were before. “A month ago I wasn’t able to walk a block, and now I can walk two blocks. That’s progress.”