I write to become more fully myself; I read to inhabit the lives of other people. That I much prefer reading to writing may tell you something uncomfortable about me. Though I am as enamored of movies and TV shows and music and video games as anyone else, reading has had a unique hold on my life because of that opportunity to conjoin myself to others and, at the best of times, help me become slower to judge and more compassionate in doing so. To put it more simply, I read to better understand those I do not understand, and I am not sure I have ever fully understood another human being. If I learn about myself along the way, I consider that a welcome bonus. We are, after all, strangers to ourselves first, and only then to others. Ross Douthat’s new book The Deep Places is about how Douthat’s body became a stranger to him and his family, an interloper in its own life. I found the book profoundly challenging, on several different axes at once. Some of that challenge is no doubt what Douthat intended; some of it is not. I have turned the book over in my head as many different times as I have for any book I’ve read this year.
The Deep Places tasks us with becoming intimately familiar with Douthat’s body and mind, and succeeds in that way that is unique to reading. The book depends on that willingness to inhabit Douthat’s life, including its most private spaces, a profound change of pace even from his memoiristic first book. If he had failed to draw his readers in, if he hadn’t successfully opened up his self to be picked over by strangers, the book would have failed completely. At that first prerequisite task he’s succeeded, to the degree that it’s hard for me to imagine someone reading this book and not wanting desperately to alleviate Douthat’s pain. This is all the more impressive given the degree of difficult here; it’s a book that requires a leap of faith. The size of that leap will depend on your priors.
About five or six years ago, Douthat began to suffer from a series of mysterious health ailments. He was unable to sleep, developed whole-body sensitivity and discomfort, had chest pains, experienced bowel issues, felt tired and irritable. His symptoms shifted in ways that made his daily level of incapacitation impossible to predict. He found that the doctors who saw him were unable to resolve his symptoms, and worse, were frequently dismissive of his concerns. Early in the process he was treated for Lyme disease, including a course of antibiotics that triggered its own set of frightening symptoms. Casting around for answers, receiving vague or unsatisfying explanations from doctors like “stress,” Douthat’s investigations lead him to a controversial diagnosis: chronic Lyme disease, a contested version of the disorder which lingers in the body long after the bacteria that causes Lyme has been eradicated and wreaks havoc. As Douthat explains crisply and efficiently in a brief history of the disease, chronic Lyme has been contentious from the first time it was named, and remains a condition that much of the medical world denies exists. If you’ll forgive me for showing my hand, its existence is questioned for good reason.
This is the leap of faith that The Deep Places requires you to make, owing to the controversy over Douthat’s diagnosis - ultimately his self-diagnosis, though he finds many doctors and various healers who cosign. As the book admits, there are very good reasons to doubt chronic Lyme’s prevalence, and in fact its existence. There are no doubt arguments against chronic Lyme available to you that are far more rigorous than I could muster; I can only faithfully report that from my totally amateur vantage point the case marshalled against its existence seems quite damning. That chronic Lyme advocates insist that both feeling better from antibiotics and feeling worse from antibiotics confirms a chronic Lyme diagnosis, for example, is not encouraging. Neither is the prevalence of studies suggesting that antibiotics, quite effective at treating acute Lyme disease, have no greater impact on chronic Lyme patients than placebo. But as I said, others are much better equipped to prosecute that case. My broader concern is that chronic Lyme taps so directly into one of the most wide-ranging and vexing problems in an always-online world, and I wonder if Douthat worries about playing into it. I would.
In the internet era, likeminded people will find each other, including those that are suffering from ailments the conventional medical system can’t treat or even define. It’s therefore no surprise that since the whole world went online the number of people claiming to suffer from disputed diseases with shifting symptoms and complex etiologies has risen dramatically. All of those people, I have no doubt, are in some kind of pain, and we are compelled by decency and shared humanity to confront that pain. But it’s also true that the internet creates conspiracists, it heightens distrust of institutions, it magnifies paranoia. On the internet, no matter how fanciful your sneaking suspicions might be, no matter how disordered and unhealthy, someone will emerge from the digital fog and whisper to you that all of it is real. From this stems gangstalking, stems QAnon, stems people who think they’re getting sick from 5G. It’s a problem from hell and one I don’t know how to fix.
What we have in The Deep Places, I think, is the most compelling and moving version of a bad argument; it provoked my admiration again and again even while I shook my head in concern on every page. Douthat’s book is a humane, searching, surprisingly feisty bit of memoir and reportage. It’s a deeply relatable portrayal of a broken medical system that no one defends but which we appear incapable of fixing. It’s also a quiet and compelling portrait of a family trying to help one of their own as he struggles with an illness that they cannot cure. But what it’s not is a convincing argument that Douthat has located the real source of his suffering, nor that he has been able to see himself from the outside sufficiently to wonder if maybe the truth lies somewhere else than where he’s searched for it. And while the journey is what’s on obvious offer here, the abstractions of health and medicine the broader interest, I cannot ignore the fact that the type of thinking Douthat has engaged in represents a very real public health problem, and one he risks deepening. Yes, Douthat’s anguished contemplation of suffering is the book’s beautiful heart. But the general cannot live without the particular, and I can’t excuse many of the particulars here. If there’s a punchline to this review, it has to be this: I came away from The Deep Places more convinced than I was before that chronic Lyme does not exist. That is a cruel summation of what I’m attempting here. But it is not an inaccurate one.
Douthat has always struck me as someone who is at home with not feeling at home. His first book, Privilege, tells the story of a young man who worked very hard to get someplace and then found that he hated it there. He is not much of a Republican; he co-authored a book defining “Sam’s Club conservatism,” an alternative to Bush-era Republican policy that was painfully out of step with the GOP mainstream even before the rise of Trumpism. Douthat is a conservative but a frequent target of the more, shall we say, tribalistic right wing, which is probably inevitable for any conservative who writes for The New York Times. And yet even though he is culturally closer to the default NYT reader than someone like Brett Stephens, Douthat seems to attract more progressive ire, I suppose precisely because he refuses to occupy the stereotype of the snarling right-winger. (I can tell you from long experience that there are many people whose first demand is not left-wing politics or right-wing politics but political comprehensibility, for everyone to dutifully sort into teams.) On balance I can think of few writers who have paid more of a price for being thoughtful than Douthat. His recent book The Decadent Society is an often compelling, occasionally meandering collection of complaints that I can imagine emerging from no other writer. He’s one of a kind, in a way I have always found endearing.
So in that sense the fact that he has written a distaff medical memoir does not surprise me. Yet I was still pretty surprised when I learned that he had written a book about struggling with chronic Lyme. Like Douthat, I’m from Connecticut, the home of Lyme disease and of a vocal part of the chronic Lyme community. So I’ve known many people who have gotten Lyme, just about all of whom have taken the prescribed antibiotics and recovered uneventfully. I have also known a fair number of people who claimed to suffer from chronic Lyme, and they have all been… crunchy. The diagnosis and its inherent antagonism to the medical establishment fit very well into a kind of bourgie hippie boomer counterculture. Chronic Lyme advocates insist that all manner of people believe they suffer from the disease, and I have no reason to doubt them. But it’s also the case that there is a decided cultural slant to their community, and I associate it more with the world of acupuncture and reiki than dissident conservatives.
And yet Douthat proves himself to be the right guide, I think precisely because he’s likely never paid money to have his chakras aligned. He so clearly does not want the answer to be found in the types of medicine that are so often superficially ridiculous, but has been moved to by unrelenting illness, and the consequence is that he is open-minded but never credulous. And he has the right character for the job. The tone of The Deep Places is consistently and understandably somber, but Douthat’s prose is most effective when he becomes crabby; there is an irascible spirit hiding beneath the surface here that I find quite endearing. The book is well-researched - researched to achieve a very particular end, but well-researched nonetheless. And it both shows and tells in a way I value in nonfiction, unafraid to wander with its author’s digressions while remaining faithfully grounded within the grim confines of Douthat’s shrunken world. The trouble is that I think that all of this craft is spent in the pursuit of proving something that he can’t prove, that no one has proven despite massive effort by thousands of people. And, deeper trouble still, he seems unable to conclude that it cannot be proven because it is not true. He contemplates it constantly, but I am never convinced that he has truly considered it.
Let’s go through with the hard part.
A friend of mine - someone wiser than I am - said that The Deep Places is not really about chronic Lyme disease at all. The book, he said, is really about the experience of being unwell, with all the devastation and heartbreak that can entail, and trying to get well in the grips of a medical establishment that can so often be uncaring and dismissive. The book does not come out for another week or two, but my perusal of the limited available opinions about it online suggests that most readers agree; they mostly think that the book is about something much broader and more important than chronic Lyme. And this is not untrue. That aspect of the book, what many would call its core concerns, is well rendered, deeply considered, and sometimes achingly poignant. I wish that I could join my friend in seeing the chronic Lyme aspect as set dressing, as incidental to the emotional heart of the text.
But I can’t do that, for a variety of reasons. The first is simply that however much the “point” of the book is to consider suffering and chronic illness and the maze of medicine, it makes claims of fact about chronic Lyme, conditional and limited but claims of fact nonetheless. Douthat lays out the project himself:
I hope to convince the skeptical reader that the case for the persistence of Lyme disease is powerful, and that the regimens prescribed by Lyme specialists represent a reasonable and empirical response to an extremely knotty problem.
Those are goals concerning establishing medical fact, and so I read The Deep Places in part as an argument about medical fact - a humble and noble argument that nonetheless ends up in places I can’t follow.
I also take Ross Douthat seriously, and to take an author seriously is to subject their books to real critical evaluation, which means that I can’t simply enjoy the elements I liked and ignore those I didn’t. A less fair reason for my critical sympathy is that I suspect The Deep Places may well become a new bible for the chronic Lyme movement. And if so, like all bibles this one will find its considerable nuance and restraint drained from it as it becomes a holy object to a group of people who, whatever the truth of their medical conditions, are looking for someone to tell them that the world has been uniquely hard on them. If the book should sell particularly well? Then some number of impressionable and unhappy people out there will read it, decide against all medical advice that they have chronic Lyme, and go on to spend years pursuing wasteful and sometimes actively harmful treatments for an illness they don't have.
Douthat would not be responsible for that, and I would not want him to censor himself about a story that is so close to his heart. I am also not deaf to the argument that chronic Lyme may be real and that if so Douthat may be offering critical support to people dealing with it. My concern as a reviewer is not so much what Douthat’s audience of chronic Lyme advocates will take from the book. My concern is that The Deep Places takes great pains to establish that Douthat is not like the less stable people who share his diagnosis. And in an important sense, I’m not sure it succeeds.
If you have read The Deep Places, please tell me if any part of this summary is inaccurate. (Or, worse, unkind.) Douthat’s problems began during a period of profound transition in his personal life and as he entered middle age. His symptoms were frequently vague and changed over time. He rejected the findings of objective scientific measurements like bloods tests. He doctor-shopped relentlessly. He self-diagnosed via the internet. He saw psychiatric origins as somehow uniquely dishonorable and insulting. He pursued naturopathic/homeopathic/alternative remedies. He generalized his plight to others and reflexively connected the particular details of his own case to critiques of the medical establishment that often seemed entirely separate from that case. Tell me: is that not the exact picture of someone who has convinced themselves into thinking that they have a mysterious medical disorder in a pathological way? A disorder with notoriously unclear boundaries, a set of ready-made conspiracy theories about how The Establishment has suppressed knowledge of it, and just enough connection to legitimate medical science to keep alive the chance that it’s all real?
Perhaps those are cruel questions. Cruel or not, they have to be asked, and while Douthat’s constant probing of his own sanity in the text is a mark of both courage and integrity, it does not assuage my fears. For every paragraph in which Douthat considers the implausibility of his own concerns, another indulges in self-reported anecdotes from those who claim to suffer from chronic Lyme and another once again traces the institutional arrogance that afflicts the average doctor’s psyche. I stress that I know how he feels; the paternalistic and arbitrary behavior of doctors is a ubiquitous aspect of mental health treatment, and the unique feeling of helplessness that doctors can inspire is something I have lived with many times in my life. But as some point the ruminations on the failings of the medical system start to feel rote, and Douthat’s objections remind me uncomfortably of myself. Because I spent nearly ten years denying my mental illness entirely and another half-decade refusing medication, and thus far have only spent four accepting both the diagnosis and the treatment. All along, my denial and obstinacy were fed by a set of complaints about the medical system that were visceral, justified, and true. But they were also, undeniably, an excuse to look at everything involved in my mental health but myself.
To be clear, I don’t think Douthat’s suffering from a mental illness. (I would gently ask him to consider what his anger at the suggestion that he might be says to someone like me.) I am not trying to force him to consider his life experience through the lens of my own. But I am saying, with love, that I am intimately familiar with the ways the mind can fool you under extreme conditions. You have no idea how many times I came to believe that I had at last come to terms with my illness and would never fail to manage it again. And then some months later I would find myself at the ER, wondering where it went wrong. Eventually I gave up; I grew to know that my conscious mind would always be an unreliable narrator. I have been stable and medicated for the longest period of my life, these four years, but I would not say that I have finally reached truth and understanding. Because the mind is an excellent liar.
All reasoning is motivated reasoning; we are self-deceiving creatures who cling to our preconceptions like death. This is a challenge to me as I read and review this book, as the least I owe my readers and Douthat is to open my mind to what are genuinely complex and confusing questions about a mysterious illness. And I promise you I kept the possibility of chronic Lyme’s legitimacy alive. But I am compelled to point out that, again and again, Douthat shares something that would seem to point firmly against his working theory of his suffering and yet seems not to notice. He references Pamela Weintraub’s Cure Unknown, another chronic Lyme memoir, and notes that “her family of four were all infected in the same yard, the same woods, the same neighborhood - and yet she, her husband, and their two sons followed completely variable paths toward recovery.” Douthat mentions this uncritically and takes it as evidence for the mysterious nature of Lyme. I, on the other hand, hear such a thing and think that a disease that supposedly springs from the same infection by the same bacterium carried by the same parasite in the same geography and yet results in totally dissonant outcomes for treatment and recovery is not one disease in any conventional sense. At times I wanted to say to some imaginary listener, “Isn’t an illness that can seem to have any symptoms imaginable at any given time a little hard to believe?”
Nor does Douthat’s attitude towards the treatments common in chronic Lyme medicine seem amenable to evidence. During one of his frequent attempts to disassociate chronic Lyme from pseudoscience, Douthat points out that far from rejecting conventional medicine, chronic Lyme sufferers want more antibiotics, while their doctors argue for fewer. In other words, unlike those who reject established medicines because of their fears of Big Pharma or their commitment to Eastern medicines, the chronic Lyme community practically begs doctors to give them more. But this is because, as I have mentioned, the best studies available have consistently shown that antibiotics do not provide more effective relief than placebo. Demanding drugs that the current science suggests do not work is understandable but unhelpful.
At one point, Douthat recalls that his wife asked a skeptical doctor if Lyme’s prevalence in the region meant it was an unsafe place to raise children. I am trying to summon all of my charity here: this is a little much. It’s hard to entertain the notion that a disease that is serious but treatable, and a potential variant that is incredibly rare if it exists at all, poses such a serious threat to children that it might make the 70,000 square miles that constitute New England an irresponsible place to raise a family. Such questions emerged from a harried and exhausted family that had been brought to its breaking point, and I have no desire to mock the sentiment, at all. But the question also has appeared now in an important work of nonfiction by a prominent and successful writer, and it is my responsibility to point out that it is this type of excess that has done so much to discredit chronic Lyme advocates. I recognize that this aside is meant, in part, to demonstrate the degree to which fear of Lyme had crept into their lives. But Douthat clearly saw it as a sensible question, describing the doctor’s response, “he looked at her as if the question had never even occurred to him.” Well, yes, I imagine he would. Skin cancer kills 15,000 people a year. The incidence of skin cancer is significantly higher in regions with a higher UV index. Yet no one has declared the Southwest an irresponsible place in which to raise children. The doctor was surprised by the question because it was not a sensible one.
I suspect that many reviewers will praise The Deep Places for Douthat’s self-doubt and willingness to question his own narrative. But I’m afraid that while I admire the effort, there is still no page in the book where Douthat’s thumb is not on the scale. I get it, I get it, I get it, and I’m sorry. I have never in my life suffered from the type of prolonged physical pain he has, nor cast about for understanding and relief within a medical system that seems at times intentionally callous. The author is excused for loading the dice. But the book is not.
Douthat speaks at length about his fellow travelers in the chronic Lyme world. He has met many of them, and they include people with great social and financial capital, and he shares their anecdotes of being ignored by conventional medicine. Well, Occam’s razor can be a cold thing, and it is far from an infallible guide. But I must invoke it here: can it possibly be the most direct, most parsimonious explanation that a disease runs rampant among some of the most affluent and well-connected people in the country, and yet for reasons that remain inscrutable to me, the medical establishment has conspired to belittle and ignore them? Medical researchers live to discover new diseases and doctors flourish professionally when they treat them. So why the conspiracy? For what purpose? Who profits? Both because of the incentives of malpractice law and the fact that more treatment means more money, our doctors tend to over treat, over diagnose. But the chronic Lyme narrative requires us to believe that doctors refuse to take it seriously, despite such suffering… for what?
Skepticism towards a particularly story about the origins of pain is not the same as skepticism towards the pain itself. Given that we have a fairly strong understanding of Lyme disease and can treat it effectively in the vast majority of cases, the thought that it can also provoke bizarre lifelong ailments that are entirely inconsistent from one case to another in symptoms, lab results, length of ailment, which treatments are effective… like I said, it requires a leap of faith in cultures where we don’t make those, and for good reason. The only thing that seems truly consistent with chronic Lyme is that those who claim to suffer from it are in pain and need our compassion and help.
There’s also a bit of a hole in the book. The marketing copy reads in part
Slowly, against his instincts and assumptions, he realizes that many of the cranks and weirdos are right, that many supposed “hypochondriacs” are victims of an indifferent medical establishment, and that all kinds of unexpected experiences and revelations lurk beneath the surface of normal existence, in the places underneath.
Setting aside its unjustifiable placement in scare quotes, the use of the word hypochondriac is notable here because, though I have not counted, the word cannot have appeared in the text more than a handful of times. I don’t believe the term Munchausen appears at all. But these are real, documented, prevalent conditions that have serious negative consequences for our overtaxed healthcare system. I spent the entire book wondering when Douthat would confront those conditions directly and with research, rather than expressed as his fleeting fears about the legitimacy of his own feelings. But it never arrived, and if there is one part of this book that I would name a serious flaw, it’s that. I am surprised the book survived the editing process without the demand for perhaps three to five pages of frank consideration of Munchausen’s and similar ailments, which might acknowledge that, yes, sometimes good and stable people believe they suffer from medical conditions when they don’t.
The chronic Lyme community, as sympathetic as I find them, makes difficult demands of the rest of us, including surrendering empirical rigor in the field where it is most essential. That the medical system has failed them, and the rest of us, can't make that a responsible idea. I have tried to separate my skepticism towards the illness from my impressions of the book, but I haven’t been able to. I am left with a long record of pain, a man who has responded to that pain in profoundly human and sympathetic ways, and a mess, a terrible mess of illness and medicine and science and conspiracism, and at its core a tangle of bodies and the people who no longer recognize them. And a book I do not know how to evaluate.
But boy, it’s beautifully rendered. Thus my dilemma, as a reviewer. Despite how harsh the above might sound, I experienced this book as a brave and brilliantly-realized cry of pain and loss, and that’s worth the purchase price itself.
It’s autumn, as I write this. Like any good stereotypical white dude from New England, fall is my favorite season. Pretentiously I tell myself that it’s because fall is the beginning of an ancient ritual of death and rebirth, because it helps me access the most visceral elements of human life, because it helps me imagine that everything I loved that has died will sometime return, flowering and green. More accurately I love fall because the weather is pleasant and the leaves are pretty and football is the only sport I really follow anymore. But either way, fall is my time of ritual. In fall I read old books by dead writers who were unafraid to sift through the silt of mundane experience to find those things that survive the cruel and steady passage of time. I drink dark beer and let pot roast braise for hours on the stove. I curl up into myself.
The Deep Places is a book for fall; I wandered today through Prospect Park and saw stubborn leaves at last beginning to change, and I thought about old gods and Christ’s love and chronic Lyme and those families that suffer from it, whatever “it” really is. The book’s manner is as spartan and tangled as the denuded trees that grace its cover. Douthat walks a narrow line, depicting a story that must by its nature invite sympathy without appearing to seek it, and he achieves this beautifully. He writes about pain, famously hard to put into words, with clarity and poise. The book is one of those rare few that tread in mourning without the constant reassurance of a happy ending soon to come. And its palette is somber and rich. As I read it, I thought of Linda Pastan, writing of a Rembrandt painting
within this frame are darker than autumn,
darker even than winter — the browns of earth,
though earth’s most radiant elements burn
through the canvas
Those colors burn through Douthat’s book too. The Deep Places is a great aesthetic success, a brief elegy that feels lived-in, earned, and yes, autumnal. It accesses stylistic modes I would not expect Douthat to reach for. I have read four of his books now and there is no doubt in my mind that this one best realizes his personal project as a writer, which I acknowledge is a somewhat presumptuous thing to say. I am one of those untrustworthy types who looks for craft first in anything I read, and I respect degree of difficulty. Writing about suffering is not easy, putting yourself out there so nakedly to a public that seems crueler by the day is not easy, and wandering through such a tangled story of the heart is not easy. For that reason alone, I commend The Deep Places.
When one group of people in society feels unheard for so long, in time they form a crusade, and the object of that crusade is the most human of all demands: feel our pain. It is natural to want the world to understand our suffering as something different, something deeper, something special. The cacophony of our political lives stems in no small part from the ceaselessly multiplying number of groups that ask that their suffering be seen as something transcendent and unique. The trouble, of course, is that we’re all suffering, and in fact to suffer is the least special, most ordinary thing any person can do.
But the moral imagination does not have limits. Our capacity for compassion cannot be overtaxed. What’s immensely clear in The Deep Places, and rendered beautifully, is that Ross Douthat has suffered, terribly, and his suffering has seeped out into his family and his home and his work. As so many have, he has been forced to deal with frequently uncaring doctors and a Byzantine and cruel medical system when he was least equipped to deal with them. He has seen people close to him express doubts about his sanity, he has questioned whether he will be well enough to continue his career, he has worried ceaselessly about leaving his family fatherless or, worse, of being a permanent burden on them. All of that deserves not just sympathy but understanding, adult and rigorous and friendly and honest understanding. For that reason, above all else, I’m glad that The Deep Places exists and I’m glad to have read it.
The late Ram Dass once wrote to grieving parents, “something in you dies when you bear the unbearable, and it is only in that dark night of the soul that you are prepared to see as God sees, and to love as God loves.” I do not know what it’s like to love as God loves. But I do know what it’s like to suffer, and then to suffer more, and at last to feel something die inside me. The note of uplift at the end of The Deep Places, uncertain but real, is a record of Douthat’s willingness to let that something die inside of him too, in order to move on. That’s a thing of beauty, and though it’s difficult that Douthat cannot declare himself healthy at the end, it’s the kind of difficulty that should be faced by any adult. In that, his book triumphs.
But I still don’t believe in chronic Lyme. And I wish I could say I was sorry.