Stranger Than Otherwise

This interview was originally published in the Sickness & Health Issue of The Mockingbird magazine. 

Mockingbird readers will no doubt recognize Ross Douthat from his byline at the New York Times, where he has served as a regular columnist since 2009. While Douthat was brought on to inject the paper’s editorial page with a dose of thoughtful conservatism, his point of view resists easy categorization, as do his interests. One week he’s writing about contentious midterm elections, the next, about the concept of spiritual decadence.

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A devout Roman Catholic, Douthat often brings his faith to bear in his columns, exemplifying an all-too-rare combination of rigor and gentleness when it comes to religious matters. In fact, listening to him (co-)host the now sadly inactive Times podcast, “The Argument,” constituted a masterclass in how to converse constructively with those who do not share your metaphysics. I consider him to be a model of compelling Christian witness in the public square: generous yet erudite, kindness working in concert with conviction. 

Douthat has written several well-regarded books that explore our nation’s socio-political landscape, chief among them Bad Religion: How We Became a Nation of Heretics. Highly recommended, especially for fans of Seculosity. So it came as a surprise when, in 2021, he published The Deep Places: A Memoir of Illness and Discovery. The book details Douthat’s long battle with the enigmatic and controversial illness known as chronic Lyme disease. It’s a harrowing (yet never self-indulgent) account of personal suffering, abounding in faith and tempered by fascinating forays into the fringes of the medical community. I was so grateful for the opportunity to speak with him about what he’s learned from dwelling in the “country of illness.” 

— David Zahl, Interviewer

Mockingbird: Writing a book like this is an act of bravery, even if it was not intended as such. I imagine you received not only a lot of unsolicited suggestions and diagnoses but also sympathy — maybe touching, maybe oppressive. What has it been like to write a memoir for the first time?

Ross Douthat: The book is a little more ambiguous than I intended it to be, about just how much better I have gotten. And I’ve continued to get somewhat better since completing it. But after its release, I did get a wave of advice. I had readers who said, “Oh, you know, if you’re still completely in the woods, you should try this obscure shaman living in a cabin sixty miles northwest of Buffalo.” I’m exaggerating for effect, but there was some of that. 

Mostly the reaction you get to a book like this is people asking for help, and that was a novelty for me, as a newspaper columnist. Unless you’re a foreign affairs columnist like Nick Kristof, my colleague who parachutes into dire war-torn areas, newspaper columnists are very bad at giving advice. Generally, we give advice to politicians, and it always goes terribly. So you must be in truly dire shape to ask someone like me for advice! 

When I set out to write the book, among other things, I was aspiring to write the kind of book that I wish I could have read myself at the outset, something that was not just a personal story but a guide to the territory — to tell you not just where this disease came from, and why it’s controversial, but also to show the range of things that people try in order to get better. And what fundamental attitude do you need to have? What are reasonable expectations for how it’s going to go?

That said, had I read this book at the outset of my illness — with its stories of spending years and years and years trying to get better — it also would have been terrifying and depressing. So that cuts both ways. I hope the advice is helpful, the map of the territory is helpful, but the reality is that a lot of people can spend a very long time trying different things to get better before they figure out what, if anything, works. And that’s not what anyone at the outset of an illness necessarily wants to hear. It certainly isn’t what I wanted to hear.

M: One of the metaphors that you explore in the book is this idea of the human body as a machine — of persons as technology — which, from a Christian point of view, is troublesome. But then you shift to saying you think of it as a landscape — that you’re providing a map of the territory, of both the experience and the body. 

Can you talk about those different images and the language we use for the body?

RD: In some ways, bodies are machines, right? They have mechanistic features: the heart pumps blood, the stomach digests food. But for the organisms that live inside your body, it is a landscape — a terrain in which they can find places to live happily and healthily.

Illness is organisms trying to find a nice place to reproduce themselves within the landscape of your body. Their homes need to be safe from your immune system, sort of hidden away. Your immune system can be disarmed or turned off or just defeated by them. 

And so, as that last line suggests, there’s a connection between the idea of the body as terrain and territory, and the other metaphor I play with, which is treatment as a kind of military campaign. As I say in the book, I’m sort of playing off Susan Sontag’s famous Illness as Metaphor, which was written as a critique of the war metaphor in disease treatment. She was writing during the Vietnam era when it was very common to hear the idea of “you must destroy the village in order to save it,” and you have to carpet bomb and defoliate the trees in order to defeat the Viet Cong. It was very easy to see how all those things could, when applied to medicine, lead people astray. When the only thing that matters is killing disease, it doesn’t matter how much damage you do to your body along the way. 

At the same time, I do think that metaphor has its uses, and is in some way inescapable when you’re trying to treat an illness. You can’t really escape the idea that your body is a territory being held by forces — blind, unthinking forces but forces all the same — and that you need to find a way to liberate yourself through drugs, through changes to your immune system, through whatever means. But that means, it is a kind of campaign against the invader.

Tabitha Soren, The Road to Calvary from the series Relief, 2020. Archival pigment print with acrylic, 21 x 28 in. Courtesy Jackson Fine Art Gallery.

M: I appreciated the way you talked about illness as sort of like demon possession. What are the ways in which it is like possession and the ways is not? When you’re in Mass, how do you hear the demonology of the New Testament? Do you hear it differently now?

RD: A little. I’m hesitant to go too far into this, because I don’t really dabble in demonology, but I’m somewhat familiar with the literature of possession. The experience of chronic illness is not the experience of a malevolent, intelligent, demon setting up shop inside your body or your consciousness. But it can feel like the disease has some kind of intelligence, right? 

So in some ways, it could seem analogous to accounts of supernatural possession. While also, most of the time, remaining I think quite distinct. But certainly, there is this sense that something is inside you that is not supposed to be there. From the beginning that’s one of the dominant feelings I always had: that something that was inside my flesh was not naturally at home there.

I was fortunate in that in my illness I didn’t have strong psychiatric manifestations, as some people do. I felt depressed at times, as one inevitably does. And there were moments when I would have symptoms — pain, or other things in my head or what seemed like around my brain, where I would get a suicidal train of thought — but it was always extremely temporary. Most of the time it felt like my psyche was intact — the nonphysical aspect of myself was intact and still familiar. 

But so the sense of possession was a sense of my body being taken over, and my mind becoming a kind of prisoner inside the body. It’s not your mind being taken over. It’s not your will, exactly, being taken over. It’s that there’s supposed to be an integration between mind and body that breaks down, and your mind becomes a kind of prisoner, and your body feels like a cage, literally in the case of sort of musculoskeletal pain, where it’s sort of running through your limbs or through your chest. That was my experience. 

M: The number of people who told you that this is psychosomatic, or that there was a psychological component, is shocking. And while I never sensed, at least in your prose, that you completely dismissed them out of hand, you seemed confident that it couldn’t simply be that, though we live in a world in which illness does seem to fulfill a psychological need for some people. I’m thinking of what Freddie de Boer wrote recently about people using their diagnosis as their identity. How did you resist that? 

RD: So, I mean, Freddie obviously thinks that I didn’t resist that. Freddie wrote one of the most skeptical but otherwise friendly reviews of the book, where he says, “This is a beautifully written book, but I don’t believe in chronic Lyme disease at all.” I have been meaning for a long time to write something about his view of things. 

There is a trend of the illness-as-identity phenomenon, particularly in the world of mental health, which is what he’s written most eloquently about. There’s the idea that you know your mental illness doesn’t need to be treated and that you should try and find a way to live with it. Despite his skepticism about my illness, he and I are basically on the same side. 

Throughout this experience, I never wanted to find a way to live with illness or to treat it as part of my identity, and so on. And I was very resistant just even to the idea of going to a Lyme disease support group, probably unfairly. I mean, I think support and community can be tremendously important things to people going through these things, but I was always very resistant to the idea of focusing primarily on psychological management, as opposed to figuring out how to make my body stop hurting. 

In the first few months, when I really had no idea what was going on, I was desperate enough for a diagnosis that I was perfectly willing to accept the idea that this was psychosomatic; I went to two psychiatrists. Had taking antidepressants removed the excruciating pain in my chest then I would have happily kept taking antidepressants. 

I try to acknowledge and be aware of how, from the outside, and even from the inside, the chronically sick person’s account of their own illness can seem suspicious. To the outsider this is super weird and just goes on forever, and the symptoms constantly shift. I completely understand that suspicion; I lived with it myself off and on throughout the experience. 

In my case, the fundamental reality was that within the first six months, it had become quite clear that taking drugs aimed at psychiatric symptoms did absolutely nothing. I think the Xanax has some, like, slight painkilling effect, whereas antibiotics generated very strong, immediate physical responses, even if it didn’t make me better immediately. When I went on antibiotics, I was able to sleep five hours instead of one hour a night after a week. And in the end, as a patient, you can’t escape that reality: If you do one thing and it does nothing, and you do another thing and it does something, you’re not going to accept a story where “Oh, my mind is resisting the healing effects of the Xanax but constructing a placebo result from the antibiotics.” I mean, there’s always some narrative you can construct, but in my case the physical reality was always undeniable. 

This extends to the spiritual realm, too — the wrestling that I inevitably did, the desperate praying that I did. Everything that happened to me that was eccentric or weird or, you know, seemed like a divine wink, had a strong physical component. And I never felt like I had Catholic and Christian friends who would say, “Well, you know, maybe there’s some spiritual issue here that you need to deal with before you can begin physically healing?” 

Spot Illustration: Lucy Haslam

There was clearly a spiritual dimension to my experience, but it always seemed to me that everything that happened to me in the spiritual realm seemed to have an effect that was mediated through my body.

M: It’s a compelling account of what it means to have an embodied faith. And by the way, the months of one hour of sleep per night is what, as a non-chronic Lyme person, sounds like the most —

RD: It’s awful! I don’t recommend it!

M: It just sounds terrible! But in the book, you wrote about prayer and there being something almost absurd or incomprehensible about calming petitionary prayer during the middle of such excruciating pain. You talked about being able to see God at work in some regard, but I’d be curious to hear what spiritual narrative you currently hold? And how does it relate to how you pray now?

RD: I think that the narrative that I have is, from a Christian perspective, a conventional one. Which is that this illness, whatever else it was, was permitted to happen for the sake of my purgation in some way, and I don’t sit here eight years later thinking I’ve become a profoundly saintlier person or anything like that, but I have more knowledge about reality in general, the nature of suffering. I have more sympathy for what my fellow human beings go through. 

And the whole experience was, in the story of my own life, a kind of breaking point for a narrative of comfortable, self-directed success. This illness, it never completely goes away, but it largely broke that narrative. My understanding is that that was necessary for my own improvement as a human being in some way. At age thirty-five, having attained a dream job at the New York Times, having married the woman I wanted to marry, having a house in Washington D.C. that sold at a high enough price that we could move out to the Connecticut countryside … then to have this experience was almost like overly literal. We were intending to live happily ever after, and God was like actually, not quite. There was nothing particularly subtle about that redirection. And I suppose that, as we move on with life and confront new redirections and so on, in certain ways, it maybe led me to pray for more clear guidance? That when we’re deciding everything from where our kids are going to middle school and high school to whether we should put an addition on our house, to what book I should write, I need some guidance.

I wouldn’t say it radically improved my prayer life overall — I’m not very good at prayer. I don’t think that’s changed dramatically, but it probably has pushed more of my praying towards asking for direction, whereas prior to this experience, I was just much more confident in the direction that I wanted to go. But it has to be God’s preferred direction, too. Now I have much more of an intuitive understanding, not just an intellectual understanding, that actually what you think you want to do is not necessarily what God is going to ask you to do.

M: There’s one moment in the book where I got chills, and you probably know what I’m going to say. It was a slightly different tone from the rest of the book — the sand dollar story. Would you mind recounting that?

RD: Yeah. This happened about a year into the illness. I had sort of stabilized myself by taking antibiotics but could not figure out how to actually get better. I had tried all kinds of things, intravenous antibiotics, seeing many different doctors. I was in terrible pain all the time and not sleeping more than four hours a night. I’d always wake up in pain at 4 AM. I had just done this big course of antibiotics which I’d placed a lot of hope in, and it made me feel even more terrible. So we went to Maine, which is where my mother’s family is from, and to my mind one of the most beautiful places in the world.

We’re at this beach that I always went to in childhood, where I would always look for sand dollars, as occasionally they would wash up. I never found one but my mother had found them as a girl. At various points in my life, I had looked for sand dollars as a kind of test, looking to God for a sign. Like, if I find a sand dollar, it means this girl who I have a crush on also likes me. It means some good thing will happen, or it just means that God exists or something. And so I played that game during this whole painful vacation, wandering around on the beach saying, if I find a sand dollar, maybe it means I’ll get better. And of course, I didn’t see a sand dollar.

And on the last morning, I went down to the beach with my son — he must have been nine months old at that point — who had been born during all this, and I was carrying him around the beach. It was all incredibly beautiful but I was in so much pain. I just sort of broke down and started sobbing — as I did frequently. This was not an unusual occurrence to be off by myself wandering around crying. But then I cried out, probably not that loudly because there are a lot of cottages along the shore, you know, some version of “Why? Why, God, why?” And then I looked down in the water, and of course, there is a sand dollar right in between my feet. It really was the same instant. 

M: I mean, I trust you — but I feel compelled to ask: Is that really true? It hits harder because I’m fairly certain you wouldn’t have written it if it weren’t. 

RD: It is entirely one hundred percent true. And you can run the math of how improbable it is given how many times you have walked a given beach. With all strange happenings, the skeptical answer is, well there’s the law of large numbers, which guarantees that at some point in your life, something that seems like divine action will happen, and it will just be that statistically one such weird thing must happen every 14.2 two years or something. The heavens did not open, the angel Gabriel did not descend. Certainly nothing quite like that has happened.

M: Do you still have it? 

RD: Yes, I still have the sand dollar. 

M: I’d hope so. I remember you said it was a small one.

RD: Yeah, it’s not a big one. It’s small. It has the sort of like floral cross on it, or what looks like a floral cross. 

It’s kind of what I said earlier: the pattern was that anything that happened during the illness, anything spiritual, always seemed to operate within the physical. And this was year one. I did have some breakthroughs around that point that enabled me to start slowly crawling up out of this, so it was close to a particular turning point in the career of the illness. 

But you know, it wasn’t a miraculous healing or anything remotely like that. I didn’t suddenly feel physically better. It was more, if you interpret it as a supernatural intervention, the intervention is basically just sort of God saying, “Yeah, I’m here.” That’s it, nothing else. That’s all you get.

M: The still small voice. 

RD: Yes, but it was a lot.

M: I think sometimes the little things are the big things. Ross, last question for you. I found it beautiful how you talk about the country of illness, or the country of suffering, as an alternate realm almost in plain sight. What would you want people who have never been there to know?

Spot Illustration: Lucy Haslam

RD: A few things. First, that it’s worse — maybe not in every case — but it’s worse than you imagined from the descriptions you’ve heard. I think the language that we use to talk about chronic illness just inevitably falls short of the reality. Many of its terms are connected to more ordinary experience: fatigue, recurring pain. If you’re a healthy person, you also have fatigue, and everyone has pain. And so when you’re healthy and you hear those words, you think you know what that means. You think, if someone has chronic fatigue, they feel the way I do after pulling an all-nighter. Or if someone has chronic pain, it feels the way you do after you injure your leg playing basketball. And that’s just not it. I didn’t understand this before I got sick. Constant migratory pain is completely different from what temporary pain feels like when you’re healthy. People’s lives are simply destroyed, hopefully temporarily, and hopefully they can eventually find a way to healing, but it’s not at all like the kind of fatigue that you get as a parent, say. It’s always there. It moves around your body and you can never get used to it. It’s, my foot hurts now. And tomorrow, your throat is closing up. And the next day, there’s burning down your spine. And it’s the mix of constancy and change. 

There’s a fundamental sympathy that can be hard for people to generate for these illnesses as they’re described, because they sound like things that people should be able to push through. And I mean, I guess I pushed through. I kept my job at the Times, our marriage held together, our kids are all still OK. So I did push through in one sense, but I was also incredibly fortunate. I had the kind of job you didn’t have to go into the office for. I had a support structure. So the fact that people just get lost in chronic illness, that they, you know, drift away into the country of illness and never find their way back — that’s totally understandable to me now. 

At the baseline, even before you get to the question of what you can do to help, having a basic sympathy for that experience is important. There are people who have psychosomatic illnesses, and there are people who get caught up in illness as identity, and there are malingerers who use mild symptoms as an excuse not to do things — all of that exists. But so does something worse. And that something worse is a lot more common than a lot of people realize or want to realize. 

M: And that alone, knowing that, is actually extremely useful. So we’re not all imagining the Real Housewives of Beverly Hills. [1]

RD: Well, that’s the other thing, too. The people who end up bringing attention to this are often celebrities or, in my case, eccentric religious newspaper columnists. But I don’t want to throw any doubt on Yolanda Hadid’s experience, right? Living with something like this, a disease that the medical system can’t get its hands around, that in order to find help for you have to go outside the mainstream — the experience makes you frustrated and furious. You can become a very difficult person, and you can sound a little unhinged sometimes. I’m sure that at times I sounded unhinged to my family and friends. That too is something that, from the outside, you have to have an understanding of. You have to say, just because this person is telling me that, you know, they got better doing something that sounds totally implausible doesn’t mean that their illness isn’t actually real. It just means that when your illness isn’t well understood, you do a lot of strange things. And you become a much stranger person than you otherwise would have been. 

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