OCTOBER 17, 2021
IT’S CALLED chronic fatigue syndrome, but a better name for severe cases would be living death.
Every year tens of thousands of Americans catch a virus — for example, a novel coronavirus — and they never really recover. For months that can stretch on to years, they suffer from headaches, brain fog, chills, fevers, restive sleep, irritable bowels, limb pain, and more. And even after their initial symptoms abate, they experience a fatigue so heavy that it feels like slow-onset paralysis, like being slowly frozen into place or turned to stone.
In bad cases (I have one in my household), the afflicted are lucky if they can make their own food, or even sit with their families at the dinner table. If they try to return to their old lives, then their symptoms can recur, stronger than before, and after every crash they may find their blanket of fatigue a little heavier, their functionality diminished a little further, until one day they can scarcely speak, chew, or even weep. It can go on for decades. The result is less like a conventional illness and more like the kind of suffering that the French mystic Simone Weil dubbed affliction. Only about five percent of cases result in complete recovery. There is no cure, or even a reliable way to manage the symptoms.
Chronic fatigue, also known as myalgic encephalomyelitis, is only one of several widespread and incurable chronic illnesses. There are around 1.5 million Americans suffering from chronic fatigue, about four million may have some form of fibromyalgia, and in 2019 alone around 476,000 contracted Lyme disease — as Ross Douthat points out in his new memoir, The Deep Places: A Memoir of Illness and Discovery. The story follows him from his columnist’s chair at The New York Times to an ill-starred house in the Connecticut woods, and then deep into his own pain-wracked body and mind, where he tries to figure out what has gone wrong and what it might mean.
Douthat knows it’s dangerous to ascribe meaning to illness, but with the final word of his subtitle, he is on to something. Having a chronic illness, or watching someone going through one, can reveal things that most people don’t know — and are probably better off not finding out.
The book begins with Douthat triumphant. He is successful in life and sure in his beliefs, even if they don’t quite match up. A devout Catholic and prominent conservative columnist, he often chides his fellow American Christians, and his fellow striving meritocrats, for believing that bad things shouldn’t happen to good, smart, hard-working, well-credentialed people. The truth, though, as Douthat admits, is that he makes one exception. Why shouldn’t he? The Lord has built a fence around Ross and all that he has! “[A]s I passed through college and into adulthood, [I] achieved the career as a writer that I wanted, won the wife I wanted, the job I wanted, the kids I wanted,” he writes. Isn’t it time he lives the country idyll he’s always dreamed of too?
With wife and children in tow, Douthat prices real estate in Connecticut. He plays the house-hunting scenes to good comic effect, consistently the butt of his own jokes and always just slightly funnier than he is insufferable. When his wife suggests a nice 1950s four-bedroom on a cul-de-sac, Douthat is aghast. “You can see McMansions from the kitchen window!” he wails. “‘What’s the point of going to Connecticut for something we can get in’ — I let the contempt flow through me — ‘suburban Virginia?’” Instead, they make a bid on a dilapidated 1790s farmhouse, ornamented with Greek revival pillars and sitting on three acres of land. Walking along the overgrown paths around the house, feeling the wet branches brush his shoulders, Douthat spots a family of deer trotting through the meadow. “Yes,” he thinks, “this is what I want.”
He should have been warier of those deer. They carry ticks, and ticks carry Lyme disease. Before he has even finalized his purchase of the house, he wakes up “with a stiff neck” and “a red swelling, a painful lymph node” near his left ear. These symptoms are harbingers of an illness that will consume the next five years of his life.
For the rest of the book, Douthat artfully weaves two stories together. The first is the story of his own illness, the increasingly outlandish treatments he is willing to try, and the havoc the affliction wreaks in his life. As he looks for a cure, he uncovers a second story: the strange tale of Lyme disease itself. Originally dismissed as the complaint of lazy, hypochondriac suburban housewives, it still meets with skepticism from conventional doctors, who don’t understand how these housewives (or a newspaper columnist) can be sick or in so much pain when there’s nothing wrong with their blood tests. The history of Lyme treatment is a decades-long round robin between an incredulous medical establishment, desperate patients like Douthat, and the slightly kooky doctors who are willing to study Lyme and treat it more seriously.
The story of the medical establishment’s skepticism is interesting, but due to the high profile of long COVID, all but the dullest physicians will have realized by now that conditions like chronic fatigue and Lyme are real. The true heart of the book is Douthat’s narrative of his personal illness. No two chronic illnesses are exactly alike, but even so this book will likely resonate with anyone who has suffered from a chronic condition or has cared for someone who has. Chronic conditions tend to share some commonalities, the elements of Simone Weil’s affliction — which, Weil wrote, “means physical pain, distress of soul, and social degradation, all at the same time.”
First, pain. During chronic illnesses like Douthat’s, pain is inescapable. He describes it as “pain that didn’t let you relax, let alone sleep; pain that made your body feel like a cage around your consciousness; tension, always tension, the opposite of a Victorian lady picturesquely swooning on a couch.”
Of course, anyone who doesn’t die suddenly will get there eventually. Our bodies age, break down, and hurt. Everyone knows this for a fact, but, as Douthat discovers, there is a world of difference between knowing a fact and being able to bear it. He feels betrayed by his whole culture: “[S]o little in my education had prepared me for this part of life — the part that was just endurance, just suffering, with all the normal compensations of embodiment withdrawn, a heavy ashfall blanketing the experience of food and drink and natural beauty.” Neither America’s sunny-side-up Christianity nor its can-do meritocratic liberalism have much to say about bodily suffering and decay. It is to be avoided, through prayer, exercise, or medication — that is all.
Second, social degradation. Intensely private and isolating, long illness is incompatible with the normal demands of American work and home life. Douthat is luckier than most, as he knows. His illness doesn’t cost him his job or his health insurance, but Lyme makes him unable to take on extra projects at the exact moment when he and his wife have dumped all of their money into the new house, which they then are forced to sell at a loss. These illnesses can stretch the strongest relationships to their limits. Douthat’s wife is understandably overcome with fear and despair, and Douthat can’t blame her. “At best you could say that we were taking turns holding each other up, but really it felt otherwise,” he writes, “more like our marriage was a leaky boat and we were taking turns filling it with water.” Just like the pain, the demands of daily life never stop, no matter how unable one is to meet them. For many, the result is financial ruin and domestic disaster.
Friends try to help, but there’s a limit. As Douthat astutely points out, “[h]uman beings have a great capacity for kindness, empathy, and help, but we are most likely to rise to the occasion when it is clearly an occasion — a moment of crisis, a time bound period of stress.” Everyone always says let me know if there’s anything I can do! And they mean it, up to a point. They will make a meal or babysit, maybe even once a week, but chronic conditions are unrelenting, and the only thing that would really help is moving in and shouldering the suffering alongside you each and every day. This is why chronic illness usually shrinks a person’s social circles down to family members. And even then, it’s only whoever’s willing and able to put their own lives on hold.
Finally, distress of the soul. In his worst periods of pain and isolation, Douthat hears “a repeated pulse of just kill yourself, just kill yourself, just kill yourself that lasted anywhere from a few minutes to an hour before it fled.” Suicide makes sense to the afflicted because the disease really can be a fate worse than death. In the most severe cases of Lyme or chronic fatigue, selfhood is suffocated under a blanket of neurological symptoms. “[T]he mind or self is shoved aside and a kind of nothing takes its place,” Douthat writes. The afflicted are left with “a nullity where the self should be.”
But worst of all is that fact that the self isn’t totally shoved aside. The afflicted remains aware of the world and all they are missing. Douthat can imagine this, picturing his infant son growing up, “his infancy and then his boyhood flowering, and through it all his father unable to be the dad he needed, not a baseball coach or a biking tutor […] a shadow of the parent he deserved.” From little league to the first day of kindergarten, first communion, high school and college graduations, weddings, even funerals — every milestone passes by with the afflicted aware but absent, like a ghost.
Thank God that never happens to Douthat. He remains “a father and a husband even in a diminished state, to love my wife and watch my children […] rather than letting them go early, leaving them alone.” Ending the book surrounded by a loving family, he is able to love them in return. It’s as much as anyone can hope for. In the absence of a medical cure, love is often all that the afflicted and their families can offer each other.
But it’s something. The final insight in Weil’s essay “The Love of God and Affliction” is that love can survive anything. The afflicted “struggles like a butterfly pinned alive into an album. But through all the horror he can continue to want to love.” This is true of the afflicted, but also of those who remain at their sides. Their love can persist in circumstances beyond all reasonable limits of human imagination and endurance. It’s quite a discovery. A revelation, even. It turns out that their love is not tied to any contingent or perishable element of the other’s appearance or personality, or even to their virtues or positive qualities. It is unadulterated love for what Weil would happily call another soul.
This realization is not any kind of consolation or silver lining. Trust me, it would be better not to know. The vast majority of the afflicted and their caregivers would surely trade this discovery for health in an instant. Yet there it is. The afflicted and those who care for them can hold each other’s hands and vow to love each other in defiance of all the horror and despair.
I love you.
I love you.
I still love you.
I promise I will love you no matter what.
Paul W. Gleason’s essays and reviews have appeared in The Washington Post, The Los Angeles Times, The Point, and many other publications. He also writes the substack Unfamiliar Letters about his old scholarly interests: American religion, literature, and higher education.