Suffering’s Bite

The body isn’t a clear machine that sometimes breaks or leaks or rusts. It’s a landscape in which many things take root. At the worst of my sickness, I sometimes had an image of a corpse in the deep woods, fertilizing the plants that grow in and around and through it, feeding the insects that swarm over it, surrounding the tree roots that grow through its rib cage as its flesh decays into the earth. Remember thou art dust, runs the Christian admonition, and to dust you shall return. But dust is dead, while the earth to which we return is very much alive. So it might be amended: Remember that your body comes out of nature, and nature can always possess it once again.

So says Ross Douthat in The Deep Places: A Memoir of Illness and Discovery. This engrossing and terrifying new book walks the reader through Douthat’s years-long struggle with Lyme disease. I would recommend it for road trips or long Thanksgiving weekends, but not for solitary business trips. I happened to read it at a conference, and I could hardly wait to get back so I could hug my kids.

I met Douthat just once, at a conference in 2017. He lingers in memory as a very thin man, who hunched a bit in his chair. That recollection now inspires a pang of something akin to guilt. I had no idea that he was so sick at the time. Most likely he was powering through pain that very evening, but I only saw a slender guy with less-than-excellent posture. How many other times have I looked right past the pain of the people sharing my air?

In Douthat’s case, I am at least in good company. He spent the first several months of his illness ordering tests and visiting specialists, trying to prove that he was truly sick, in body and not just in mind. This story will sound familiar to veterans of chronic illness. Lyme is one of those diseases that our health care system handles quite badly.

This might initially seem strange, because it is bacterial infection, caused by a corkscrew-shaped pathogen called a spirochete. We know how it enters the body: through the bite of an infected tick. After that though, the picture gets cloudy. As with any bacterial infection, antibiotics are the go-to treatment option, and for most Lyme patients a run of antibiotics does seem to be curative. But a non-trivial minority just keep getting sicker, manifesting an astonishing array of debilitating symptoms in whirling succession. One day the knees or shoulders may throb; the next day the spine is on fire. Chest pains and constricted throats send them racing to emergency rooms, where doctors insist that nothing is wrong. Here we see another regular feature of chronic Lyme stories: patients are miserable, but their physicians can’t find much wrong with them. Eventually, they shrug their shoulders, and offer psych referrals.

An Alien Invader

Psychiatry does not help Douthat, and it finally becomes clear that he does have a tick-borne illness. By now though, he is extremely sick, clinging to his job and family through a haze of near-constant pain. He must decide how aggressively to treat his illness, and this runs him directly into the raging controversies surrounding chronic Lyme. What is it? Is it alive? Roughly 1% of America’s population now contracts Lyme disease in a given year, and standard treatment fails to cure at least 5% of patients (but perhaps far more than that). There are, in other words, thousands of Americans now suffering from “Post Treatment Lyme Disease Syndrome,” with that number growing year by year. Despite that, specialists still debate whether or not chronic Lyme is even bacterial.

Some physicians hold that chronic Lyme patients are suffering from a kind of auto-immune disease, triggered by the original infection. On this view, the Lyme is now dead, but the body is struggling to cope with the damage it inflicted prior to treatment. Another camp of physicians sees the Lyme spirochete as a scrappy survivor that may withstand normal antibiotic treatments, changing shape and hiding out in different parts of the body. A garden-variety course of doxycycline will not do. They need the antibiotic equivalent of Napoleon’s Grande Armée.

Douthat clearly sides with this second camp. Living in the upper Midwest, I have known chronic Lyme sufferers, and I have yet to meet one who would disagree. On a phenomenological level, Lyme clearly feels to patients like an alien invader. They reach for martial terms, not homeopathic ones, to describe their struggle. This is the point in the book where Douthat’s Cinderella Man story starts to spiral into a reality episode of Black Mirror.

His body continues to deteriorate, and his pain isolates him in a personal Purgatory. He begins exploring a netherworld of alternative treatments, desperate for anything that might help. He experiments with all manner of remedies recommended by fellow Lyme sufferers in internet fora: herbs, salt tablets, stevia. He tries intravenous vitamin C. He gets magnetized.

Most important of all, he starts “chasing the Herxheimer,” or “Herxing,” in the parlance of Lyme patients. When microbes die en masse within the body, they can trigger a painful burning and jerking sensation, called a Herxheimer reaction. It’s unpleasant, but for chronic Lyme patients, the Herxheimer can become a source of intelligence, helping them to strategize in their intra-corporeal war. When a particular part of his body starts to hurt, Douthat learns to reach for the appropriate trigger (an herb, a stevia packet, an electromagnetic pulse). That pushes the spirochetes to their highest levels of activity. The pain increases, and unleashes the antibiotics. Think of guerilla soldiers being lured from their hide-outs, so they can be vaporized by an air attack. Burning spasms signal the success of the venture.

This is strange stuff, and Douthat knows it. But after years of bewildering symptoms, conflicting advice, and an uncertain outlook, he is grimly excited by his newfound ability to take charge of his disease. He becomes a master strategist, experimenting with all manner of triggers and antibiotics, routing his enemy within his own bloodstream. Over time, the process pays dividends, and he starts sleeping again. He finds himself taking actual pleasure in time spent with family and friends. He and his wife welcome a fourth child into their family, and Douthat concludes the book with his youngest daughter “beside me now, toying with the fringes of her blanket, her mere existence a rebuke to all our doubts about conceiving her, and her life a vindication of everything I’ve done to try to save my own.”

Unrecognized Pain

It’s a beautiful conclusion to a gut-wrenching book. At the time of writing, Douthat has yet to fully recover, but he has escaped from his prison of pain. He has reached a place where beauty and joy can touch him once again. Life feels worth living. Finishing the book in seat B of a Boeing 737, I laughed aloud at the final line of the acknowledgements, in which Douthat affectionately exhorts his wife, “Let’s never do anything like that again.”

Despite these touches of humor, The Deep Places remains a profoundly unsettling book. Across his years at the New York Times, Douthat has earned a reputation for navigating controversy with bonhomie and balance, and he holds that same tone across this Job-like tale of torment. It’s brutally effective for bringing his suffering into the realm of the real. If Douthat were unknown, or simply less talented, he would easily be dismissed as a crank. As it is, we feel compelled to take him seriously, but we might still prefer not to. It is most disagreeable to consider that thousands of our compatriots may be experiencing a veritable medieval torture chamber in their own tastefully decorated bedrooms. Again I recall that hunched, very thin form, and feel accused.

This may perhaps explain why I was unable to stop my inner skeptic from piecing together alternative explanations for the experiences Douthat describes. As I moved through the chapters, some part of my brain was noting that his illness went undiagnosed for a long time, which presumably gave the Lyme ample opportunity to wreak havoc on his body and mind. It seems possible, too, that a hyper-rational man might require a deliberate-but-excruciating pathway out of darkness, for psychosomatic reasons. In any event, everyone knows that we Catholics are gluttons for punishment. Perhaps the herxing was the via dolorosa that Douthat needed to knit his body and mind back together. Must we really believe in shape-shifting, bacterial guerilla-warriors that elude both normal antibiotics, and whole batteries of lab tests?

The skeptical counter-argument seems to write itself, and yet, I can’t really believe it. Even beyond Douthat’s own very credible story, I am influenced here by the testimony of personal friends, who similarly escaped the ravages of Lyme through unapproved, aggressive antibiotic regimens. Many mysteries remain, but it is a plain fact that tick-borne illness has become an epidemic-level problem, which physicians still cannot treat effectively. We have to take the “survivor stories” seriously, and I do fervently hope that Douthat’s will bring relief to Lyme sufferers, either by helping to vindicate his own theories, or by inspiring medical researchers to work harder at disproving them. Either development would be wonderful if it brought us closer to an effective cure.

The body is spectacularly complex, but a human being is more complex still, and physicians who fail to see this will be unable to practice their art prudently.

The Medical Art

Of course, the implications of this story go well beyond the realm of tick-borne illness. In an information age, the practice of medicine will inevitably come under immense pressure, because practitioners tend to be painfully overworked, while chronically ill patients may have nothing but time in which to research their condition. Sick people are vulnerable, and desperation may impair their judgment, but they live with their symptoms 24 hours a day, so it is inevitable that they will sometimes uncover truths about themselves that their physicians have missed.

Then, too, it is perfectly reasonable for patients to become impatient, demanding a more active role in their own recovery. It seems plain that herxing was beneficial to Douthat in part because it helped him recover a sense of agency, at a time when his life seemed to have been shattered. That’s very understandable, and it’s just one of many complex ways in which the physiological, mental, and moral aspects of human nature can combine. We still need experts, but simple, paternalistic relationships between doctor and patient may just be untenable in our time.

This is difficult. The frailty of the body is frightening, and it can be comforting to cling to the ringing assertion that “science is real!” It is also quite true, of course, that advances in medical science have dramatically expanded our ability to treat illness and injury. I myself barely survived pneumonia as a week-old infant, and I try to remember this every time I have a frustrating experience with a myopic physician. Without modern medicine, I would not have lived long enough to grumble over the obtuseness of our white-coated body-mechanics.

Nevertheless, it remains true that healing involves more than the correct application of scientific principles. The body is spectacularly complex, but a human being is more complex still, and physicians who fail to see this will be unable to practice their art prudently. Sometimes a body-mechanic can supply what is wanted in a limited context, but at other times a physician may need function more like a consultant or a coach, assisting an ailing person along the road towards health.

When I first picked up The Deep Places, I was dubious about the title. It seemed melodramatic. After reading, I changed my mind. This is a book about deep places. It’s about places in the forest where life-shattering arachnids may be lurking in any clump of grass. It’s about places in the body where mysterious pathogens take refuge. It’s about the places sick people go when brightly-lit waiting rooms fail them, but also about those places in the mind and soul that we discover only in our darkest hours. Not everyone knows about these deep places. After reading the book, they will. I hope that Douthat and his family never return to these depths, but I hope even more that the book becomes a lifeline for people who live there. In the meanwhile, it can serve as a tutorial for more oblivious readers, such as myself.