(Convergent Books, 2021, hardcover, 224 pages, $26; Kindle $14.95)
Reviewed by Brian Caulfield
Halfway through this book, I called a friend who has had Lyme disease for more than four years. “Do you,” I urgently wanted to know, “suffer the kind of pain that Ross Douthat describes in his book?” My friend paused, as if hesitant to reveal a secret she had lived with too long to let out. Yes, she finally admitted, his story read like a diary of her own Lyme experience. “He puts into words,” she told me, “the pain and suffering I thought no one would ever be able to understand.” At that moment, I realized I was speaking to someone I didn’t really know. For all her silent suffering, I thought, my friend clearly was headed for sainthood.
Pain is central to Douthat’s narrative of chronic Lyme disease, which many medical experts claim does not exist, some writing it off as psychosomatic—it’s all in his head and the heads of legions of others who insist lingering Lyme is the source of their long-term suffering. Indeed, without Douthat’s gripping descriptions of his own pain, The Deep Places would read much like the many medical mysteries on offer in Reader’s Digest and TV magazine shows. Interesting, yet forgettable.
The pain that Douthat describes has a personality, a persistent, even sinister presence; hidden in the sinews of the self but ready to emerge when a new treatment reactivates the infection or some unknown trigger in the middle of the night makes the patient feel as if his head were exploding, or his joints ballooning, or his heart beating out of his chest. Call it an insane pain, one that rises from deep inside its victim, causing him to moan, rock in a fetal position, rush out into the cold to stamp his feet. Pain that drives him to self-medicate with heavy doses of antibiotics—going so far as to order them from veterinarians for his phantom pets—and snake-oil-seeming treatments that a credentialed Harvard graduate and columnist for the New York Times would be expected to shun while dutifully following the science. All the pain, shame, suspicion, and unspeakable misery that Douthat endured for years, along with a measure of sober reflection and gallows humor, are clearly recalled and minutely detailed in this unusual book, subtitled A Memoir of Illness and Discovery.
My wife and I have raised two children in Connecticut. For the past 20 years, Lyme and the deer ticks that spread it have been a shadow in our suburban backyard, a short drive from the town that gave the disease its name. We’ve checked for ticks and the signature bullseye red marks on the skin and, fortunately, have never had an incident in our family. But we know people who have been infected, some recovering after the prescribed rounds of antibiotics, others, like my friend and her family, suffering generations of infection—in her case, mother, daughter, and granddaughter. I have long believed the testimony of chronic Lyme patients, and Douthat’s book gives eloquent voice to their plight and a rational basis to doubt the judgment of the medical establishment, which tends to discount conditions it cannot treat or cure.
Yet Douthat also understands why doctors, and even friends and family members, can doubt his physical symptoms. As a professional journalist hot on a lead, he delves into the deep places, indeed, asking himself questions that probe persistent existential mysteries: When is an illness real and when is it imagined, or real and imagined? Who are we as individuals who suffer, and in that capacity, what demands can we make on others? How can a patient not take the infection personally when he senses little parasites—spry Lyme spirochetes—hiding in his body tissue, exponentially replicating, flaring up in protest to treatments, and then retreating to build reinforcements?
In considering these questions, and others that can’t be covered in a brief review, Douthat lays his self as bare as a person can in print. He writes as an advocate for chronic Lyme patients and makes a compelling case that they need more than sympathy from friends and dismissive prescriptions from physicians: Take 30 days of antibiotics and don’t call me after that because there’s nothing more I can do for you. In a particularly moving passage, he estimates the number of people in America who are suffering unremitting pain from unresolved conditions. Hundreds of thousands, by his count, have been abandoned by medical science and left to live out their days in chronic pain, with many, Quixote-like, draining their savings to chase a cure that may never materialize.
How far has Douthat gone to find that cure? Picture the erudite author clandestinely ordering a Rife machine, named for a scientist who claimed a century ago that precise radio frequencies could disrupt certain viruses and cure infectious diseases. This desperate yet hopeful patient quietly carries the laptop-size machine up the back steps to his home office, hiding it from his suspicious wife, who has been pushed to the brink by his self-help antics. He turns it on, tunes to the frequency recommended online by other chronic Lyme sufferers, and grabs the handles to aim the electromagnetic field at his body. After several sessions, he lets his wife know, “casually that, by the way, we had a new housemate, about the size of a particularly bulky laptop, that, I would be spending a fair amount of time with going forward. This was not my best marital decision.” Wry moments like this one are sprinkled throughout the story, providing welcome relief for both author and reader.
In other sections, Douthat seeks to find meaning in his suffering, drawing on his (Catholic) faith, ancient and modern philosophy, and a wide swathe of literature for understanding. He reports meditating on the suffering of Job, relating an incident that occurred after he went to Confession and was saying his penance in the church. Struck with a sudden spasm of pain, he lay down on the pew to hide his writhing from those entering for the noon Mass. But his ears perked up at the first reading. It was from the Book of Job, when Satan asks God for permission to torture Job in order to test his fidelity. In one of the more perplexing of passages, God answers, “Behold, he is in your hands; only spare his life.”
With his pain receding, Douthat laughs out loud in the pew. Job learned the hard way one of the most difficult biblical teachings: God allows suffering for some greater good that only he knows and which will be revealed to those who persevere in his plan. Picking up on God’s command to Satan to spare his servant’s life, Douthat concludes his “not-yet-finished-story”:
I have lived for six years with invaders in my flesh, I have seen the world from way down underneath, I have done things I couldn’t have imagined, I have fought and fought and fought.
And I am still alive.
That is a happy ending in this vale of tears.
Brian Caulfield writes from Connecticut.