The empire of maladies
Ross Douthat on illness, imprudent rural adventures, and finding God at the end of it all
Ross Douthat is one of those People Who Need No Introduction, and yet I’ll attempt one anyhow. Columnist at The New York Times (conservative section), author of several books including the prescient The Decadent Society, he is surprisingly personable despite having graduated from Harvard. Just last month Douthat published a very personal memoir of his struggle with chronic illness titled The Deep Places: A Memoir of Illness and Discovery which I heartily recommend.
Douthat and I chatted on The Pull Request social audio show on Callin; I recommend downloading Callin and subscribing (for free) to The Pull Request as all audio will live there going forward.
Hello everybody. I've got Ross Douthat on….and I'm sure I'm mispronouncing your last name, Ross.
You're very close. It's Douthat (Dowth-hat).
I don't know that my ESL tongue can handle this...
It doesn't sing like Garcia-Martinez. It's kind of a crude Northern English kind of thing.
I like the fact that I draft off the cachet of Garcia-Marquez.
That's true. You do. In so many ways.
In the first take of my Andrew Sullivan interview, when he introduced me, he called me Garcia Marquez, which I actually find very flattering. I just aspire that one day somebody refers to Garcia Marquez and says my name instead.
So, here we are with Ross Douthat. Damn it, I just mispronounced it again. I'm just going to call you Ross. Sorry, Ross.
That's just fine.
I'll concede that I'm totally fanboying here. I've been a long-time reader of yours. With all respect to your other colleagues, you're probably the only New York Times columnist I consistently read. If there was like a fantasy football league for columnists and you could construct your own fantasy newspaper, you'd be one of my starters in my fantasy columnist league, I have to say. I'll give you time to respond, Ross. You look pensive.
No. I'm just going to see how far you'll go with this. I think I'll just stay silent. The level of complimenting might actually just increase over the next 30 seconds.
Oh, I thought you were going to ask who else is on the team? I'd say probably David Brooks, maybe even Liz Bruenig, even though I don't like her politics…definitely Caitlin Flanagan. Very few others I'd put on my fantasy op-ed list, without going into the free agents on Substack. That'd be a whole separate league.
Isn’t that Substack itself, basically a sort of fantasy draft for an oped page?
That's what I keep telling the founders. They need to bundle it such that I could pick Taibbi, Sullivan and a couple others and make it my own personal magazine and totally wall myself into my own bubble without any need to read anybody else.
So the reason we're rapping here with Ross is that he has a new book out that's coming out. I believe October 26, if I'm not mistaken, is that right, Ross?
That is right. As far as I know. Yes.
Cool. And I highly recommend it. I think everyone should go out and pre-order it, which by the way is important because we need to tweak Ross's first weeks of book sales, which is a critical milestone.
That's right. It means I can get on the New York Times bestseller list without having that dagger next to the book, indicating that I personally bought 50,000 copies of it in order to get it there.
Right. These are the subtle iconographies of the elite New York book world. That little dagger is meant to be plunged into your chest.1
Your new book revealed something about you that obviously, I knew nothing about, which is that you suffered from chronic illness for the better part of a decade. I have a lot of questions for you. But one thing I'll say is that I'm so impressed. You've had this successful writing career all throughout it. How did you manage to meet your weekly column deadlines with what seemed like an absolutely debilitating illness?
One of the many interesting things about the illness is that it's an illness that is often considered psychosomatic. Basically people who claim to suffer from the chronic form of Lyme disease, which is this delightful illness spread by tiny ticks that crawl under your skin and inject you with terrifying bacteria….it’s quite common for doctors to assume that the disease is psychosomatic or psychogenic.
Because if it doesn't show up on blood tests or it shows up on some blood tests and not on others, there's a sort of official CDC approved approach to treating Lyme disease, which is to give people four to six weeks of antibiotics. And most people do get better with that kind of treatment. Then the people who don't are told they have something called post-treatment Lyme disease syndrome, which is basically a medical way of saying we don't have a clue what's wrong with you but it's probably in your head.
So I spent a certain amount of time, especially early in the illness before I even knew exactly what it was, certainly before I groped my way to actual treatments for it, being told—usually in a fairly kind-seeming way—that whatever was wrong with me was probably a result of stress, anxiety, depression or some kind of fundamentally mental disorder that happened to be manifesting itself in excruciating bodily pain for reasons that were not explained to me. And the irony for someone experiencing that kind of diagnosis is that from the beginning, and really throughout the whole experience, which has been going on for six years now with thankfully a lot of improvement along the way, my mind was the only part of my body, or the only part of myself, that actually seemed to continue to work.
So, while there were days when it was extremely difficult to write newspaper columns and you had to absolutely force yourself to do it. There were also a lot of days in which the act of writing, of forcing yourself out of your body into sort of a purely mental space or into the internet version of a purely mental space, was, if not a relief, at least one of the few things that I was actually capable of doing. But this sort of heightened the strangeness of the dynamic of being told that your physical pain is somehow being created by some kind of mental problem.
Because again and again, I would circle back to the sense that, well, actually my mind is still my mind. It seems unchanged from before the illness to afterward, and it's only everything else that has changed. But that preservation, for the most part, is how I managed to continue to qualify for your fantasy pundit league, in spite of everything else that was going wrong in our life. With the other point being that we, as readers will learn if they pick up the book, had made a huge real estate investment by buying a house in the country, and my wife was pregnant with our third child.
The rest of the time you tell yourself: life is full of suffering. And if there is a God, then suffering is necessary somehow for our purgation and transformation, and you have to deal with it and hope that in the mercy of God, you come out the other side. And that's not necessarily a helpful way of thinking. It's not always a comforting one, right? Because, maybe your purgation and suffering is going to be lifelong … It's just easier to carry something that you think is a burden that's been given to you than something that's just been dropped on you for no reason.
But let me ask you a few things there, because one of the interesting things about the book is that I think you very much guide the reader, almost like Dante through the Inferno to use a cliché, through what I think Siddhartha Mukherjee in The Emperor of All Maladies called the kingdom of the sick. When you get a cancer diagnosis or any sort of serious health diagnosis, suddenly you're in this class of the infirm who shuttle between hospitals and doctors, and are in a struggle against some unseen foe; you've somehow left the world of the healthy.
It seemed to distance you not just from the outside world, but even from your family and even from your wife who often was puzzled by your various attempts to treat yourself. It almost felt claustrophobic in a way. I'm remembering that gadget that you bought, that used sonic vibration or something, and that you used your attic space because it was obviously weird and you didn't want your wife to see it. How was that?
You could say there are a lot of different provinces in the kingdom of the suffering, if you wanted to extend the metaphor a little further. There's this basic shift that happens where you go from being a healthy person to being a sick person. And if you've been healthy for your whole life, as with a few exceptions I mostly have been, you really have no understanding of what it's like to be actually sick on some sort of permanent inalterable-seeming basis until it actually happens. So there's that sort of primary adaptation, but then there's obviously a huge range of ways to be sick.
For people dealing with a life-threatening diagnosis, treating cancer and so on, that's a particular kind of experience. What I'm describing in this book is a different kind of experience where you're terribly sick, you're incapacitated in various ways. For me, it took the form of basically terrible physical pain, all around my body, as well as phantom heart attacks, total sleeplessness, and a very wide range of interesting physical symptoms. But at the same time, you're not dying, right? It doesn't seem to be a terminal illness, and it's an illness that you can eventually get some kind of diagnosis for, but as with many chronic illnesses, there's no clear or approved path of treatment. You end up being forced, deeper and deeper, into more and more experimental modes of treating yourself.
In the case of Lyme disease, there's a big community of doctors who are on the edges of medical orthodoxy, who will in fact treat people who are sick this way for longer periods of time than the CDC approves, or than official medicine allows for. And I had several doctors like that, and I could not have survived and gotten better in certain ways without them. But even with those doctors, they're all sort of doing experimental things that shift from patient to patient, depending on the symptomology they're dealing with and what seems to work. They don't have a simple consensus about how to treat these kinds of conditions. And so you really do end up becoming your own doctor, to which again, it's just not an experience that would have been imaginable to my 34 year-old self.
Yes, to the point, as I talk about in the book, not just taking lots and lots of antibiotics, not just experimenting with herbs and enzymes and all kinds of weird things…buy yeah, going into the realm where you'll buy a machine that generates sound frequencies that are alleged to shatter bacteria, the way a high note in an opera might shatter a glass of water. Those are the kinds of things that at every stage you tell yourself, well, I'm going to do this weird thing, but I'm certainly not going to do the next weird thing. That would just be crazy. And then six months go by, and if you haven't made any progress, you will happily go ahead and try something even weirder.
Part of the reason why your book resonated with me so much was that, when I was living in New York, for a collection of lifestyle reasons—stress, sleep, diet, psychology—I ended up having a basket of symptoms. Doctors did endless tests but came to no conclusion, so I diagnosed myself with fibromyalgia, which is this general malaise that hits you with this bizarre cluster of symptoms. I had this for weeks, and I think it was really just the Wall Street trading floor life killing me slowly. As soon as I left it, it went away. But I hit up against what you discovered, which is that the limits of human medical knowledge are quite constrained.
Doctors test things, they see nothing, they go through their mental flow charts about how various illnesses should play out. If your situation isn’t in the flowchart, you just get put into the crazy bucket, and then that's it. They just stare at you and say, I don't know, deal with it.
Then what you do is, of course, go to these forums and you find people who are as obsessed with their own illness as you are, and they direct you to medical doctors who are on the fringes of the accepted medical world and you're on your own.
What's interesting, what I didn't fully realize right before this happened was that, something like fibromyalgia, right? It gets described as a diagnosis. It's like, oh, so-and-so was told she had fibromyalgia, that's their diagnosis. But in fact, when you drill down, all that fibromyalgia is, is a description of symptoms, right? It's a way of saying this is a category into which we place a set of physical symptoms whose genesis we can't fully explain. We have some speculations, and here's a painkiller or an antidepressant. One of the many things I was told that by doctors who didn't particularly want to treat me was fibromyalgia. And by the time that word got thrown around, I had sort of figured out that people telling you ‘fibromyalgia’, aren't actually telling you anything that's particularly useful; it's kind of an interesting realization.
I had the same experience! In my case, the answer to that was simply moving from New York and not working on Wall Street anymore. But I got the feeling I was dumped in the fibromyalgia bucket. It's funny, at the time I was dating a medical resident, and she's like, “Oh my God, the fibromyalgia people, they're just hypochondriacs. You never want to see anybody with that on their chart, because it's this litany of complaints.” You could already see the medical establishment getting exasperated at it.
Which is peculiar. One of the peculiarities of this experience is that there's a sense in which official medicine on the one hand is very focused on material explanations. Any condition needs to have a material explanation. To the extent that it doesn't, it probably doesn't exist, and is psychogenic and so on.
At the same time, when confronted with conditions for which there isn't an immediate material explanation, you often find that doctors are quicker than patients to retreat to the immaterial. This is something that happened to me. But once you spend a lot of time talking to people who have chronic illnesses, you realize this is very commonplace. The patient wants the doctor to be a materialist. To say, okay here's what has gone wrong in your system, and here's how we're going to fix it.
Or, I don't know what's gone wrong in your system, but clearly something has, so let's experiment and explore.
But then the doctor is the one who says: "Well, it's the mind-body connection. It's just a big mystery. We can't fully understand this sort of thing."
It's a weird reversal in a sense of the mentality that you would expect from, in certain ways, modern medicine, which you would think would sort of hesitate to retreat to mystery. But in fact can be very quick to retreat to mystery if there isn't a fairly simple solution that's already in the medical textbooks waiting to be applied.
One thing I should probably mention Ross is that Lyme disease may not be known to many people on the West Coast. It's not hugely common here. Maybe you want to describe it.
Yeah. It is a spirochete, which means is a corkscrew-shaped bacteria that is carried by deer ticks, but which don't just feed on deer. They also feed obviously on human beings, but on chipmunks and mice, a whole variety of animals. So it sort of migrates around the wooded Northeastern and increasingly Midwestern and the upper Southern ecosystems. And in fact, there is now a fair amount of it in California. So, your West Coast listeners should be at least a little bit aware. If you look at the maps of Lyme disease, you basically have maps that get darker and darker with cases starting in the Northeast and the Midwest during the sixties and seventies. But at this point, there are also Floridian and Californian outbreaks. So, it's more national than its origin in the lovely town of Old Lyme, Connecticut would necessarily suggest. The working theory is that it's a pathogen that’s spread because of suburbanization, which is why it emerges, in this theory, in the post-war American world.
And then obviously climate change has altered habitat patterns and created a world where deer ticks are less likely to die off in the winter, for instance. So like in the state of Maine, which is where my mother's family is from, there's a lot more tick-borne illness than there used to be because the winters are not as cold, so fewer ticks die off in the frosts. And there are more of them around in the spring, and that expands their habitats and expands their numbers. So those are the basic dynamics at play with the disease.
But then the bacteria itself has all of these remarkable capacities. One scientist who studies it told me that she'd been with some other scientists who said that it seems to move faster through tissue than through your bloodstream. So it has this kind of burrowing quality, which is why Lyme patients end up with pain in knee joints. The title of my book is The Deep Places, which is obviously has like six different intended meanings, but one very literal meaning is that the places you end up with the worst symptoms are often the deepest places in your body where neither antibiotics nor your own immune system can always reach.
I had my own Lyme scare back when I was living in the woods, like a tree hippy on Orcas Island in this offgrid compound, and there were deer everywhere. At one point I did have some sort of tick bite—pulled the little bugger off myself—and I remember I took a prophylactic dose of doxycycline, which I think you were on as the standard Lyme disease treatment.
That's one of the twelve or so antibiotics. The reality is just in terms of public service announcements, if you get a tick bite and take a prophylactic dose of doxycycline, you will probably be fine. The reason you end up with so many chronic cases is two fold. First, because chronic cases haven't been taken seriously. There's been a tendency to assume that you only get Lyme disease if you have this bullseye rash around the tick bite. So doctors would wait to prescribe antibiotics until something like that appeared, which was probably a mistake. And then also it's very easy because the ticks are so tiny, especially in the spring when they're like the size of a poppy seed; you can have a tick go in and you just never noticed this at all.
Lyme disease can creep up on you basically. So two years after you didn't notice the tick, you suddenly have fatigue or joint pain and so on. It's very hard to then trace that etiology back to the original bite. But I do tell people who respond with terror to what I had that if your kids come in with a tick and you give them a dose of antibiotics, you should probably feel pretty safe about having something really harrowing happen.
Ross, you've already scared the shit out of me. I'm actually already doing the calendar math. And when's the last time I was actually in the woods? The crazy health scare I actually had on Orcas was hantavirus, which is more common in the west than Lyme disease, and more dangerous. It's not chronic, it just kills 30% of people who get it in a horrifying hemorrhagic fever. And it's due to mouse droppings of all things.
Nature wants to kill you, right? That's more in the case of Lyme disease too essentially, possessing you for decades and decades of time….
Let's get back to your timeline, as it's also relevant to how you were even exposed to it. Because I think of you as part of the urban cosmopolitan class, Ross, despite your religion and your politics. But in fact, how you open the book is house shopping in New England for a bucolic dream and spending all of a day there, which is how this drama started. You got a lot more than you expected when you bought that farmhouse.
Right? The book is an illness story, but with the subtext of being a real estate disaster story woven in for people who enjoy that sort of thing. And yeah, it starts with my wife and I. We’re both from Connecticut from different parts: I’m from New Haven, and she’s from a somewhat more rural area. We were married and living Washington DC; we always wanted to move back to New England. I in particular had this rural fantasy, of like the barn, the chickens, the kids playing in the fields, the stone walls, the kind of antique house perched over a meadow that I think actually goes quite well with my reactionary brand. And, so we actually did this.
It was a fantasy and then there was a series of events that made us want to sell our house in DC: we had jobs that would allow us to work from the country, as long as you were close enough to a train or to the city. We went ahead and made this leap and our house in DC sold. It was a hot market and we sold it for way over what we were asking. We had a lot of extra money and we just plowed it into a 1790s farmhouse on three acres with a barn and fields. And yeah, it was almost certainly while walking the edge of those fields on the literal house inspection itself, that I acquired Lyme disease. But we were still in DC for several months after that point. That was part of how the disease got really established.
I would see doctors and my blood work would be negative, or I later learned sort of ambiguously negative, right? There's sort of a range of antibody reactions you can get in these blood tests. They would say, "Well, we're not seeing anything in your blood work. You have all these insane symptoms, but they don't show up on any of our tests. You're in a high pressure job." I mean, it was a version of the Wall Street theory of your own fibromyalgia, right? Like you're a New York Times columnist buying a big house and your wife is pregnant. You're obviously under a lot of stress and your body has just conjured up these symptoms as a result. And it was only when we somehow dragged ourselves up to Connecticut and actually made the move that the doctors up there would say, well, this is almost certainly a tick-borne illness.
We see this kind of thing all the time. But at that point I was sick enough that I was in fact a chronic case. I'd been sick for four months or so. Taking antibiotics stabilized things, but it did not get any better. And so for the next couple of years, we tried to live in this house in the country and live our rural fantasy while my health was a total disaster. The comparison, the literary and cinematic analogy, is to The Shining. Except we're both writers, and I'm sitting there at my laptop instead of Jack Nicholson's typewriter, banging away on columns with an unhinged look in my eye and my shirt off where I've been rubbing at some body part. Abby, my poor wife, is trying to survive with a new baby and two kids in a kind of Stephen King landscape.
You managed to paint all that terribly well. At the same time of all these health problems, also being forced to make a living along with many other pressures. That's been one of my nightmares, of somehow being disabled and not being able to make a living and not being in a place where I could deal with external reality while also dealing with my own internal reality. One of the topics that fascinates me, as you probably know Ross, is religion and public life. I think you're one of the few openly religious writers in the normal world or the elite world even, right?
Not the normal world.
Not the normal world. That's right. Sorry.
Maybe in your op-ed fantasy league, I'm one of the more religious writers that's probably right.
Although you mentioned Brooks and Bruenig and all of them. You have a deep pro-religion bias.
Well, certain religions. So I'm curious…as you were telling your tale of woe, this is almost the tale of Job. This is the character in the Hebrew bible who was afflicted with what seems like an unwarranted and sudden illness. He retreats into his faith, and at the end of the day, God wins the bet with Satan that Job would stay true. I was thinking as I was reading: Ross is such a religious guy. He takes so much solace in the mass and in his faith. At some point, religion is going to come save him or at least be a salve to his suffering. And it seemed like it sort of did.
Yeah, I think it was more of a crutch than a salve, is the best way to think about it. In the sense that I had a few experiences that were not supernatural, but at least pretty weird over the course of the illness that you could sort of see through the lens of religious interpretation as signposts, or helping hands, or that kind of thing. But there was never a sense that like...that God is personally healing my wounds or anything like that. It's much more that you end up in this situation., and either your faith breaks apart, as it didn’t for Job, and you curse God or deny His existence and decide that the universe is as ruthless and uncaring as a pathogen-carrying tick. Or as I mostly did, you lean on the idea that all this has to be happening for some kind of reason.
That's not necessarily a sort of completely rational perspective in the sense that, there's nothing about suffering that proves the existence of God one way or another. I think it's totally reasonable for a skeptical atheistic type to look at the fact that people who are suffering find solace in the belief that it's all happening for a reason and say, ah the fond delusions of a suffering humanity. That's a totally reasonable point of view to take.
But having the experience itself has been de-intellectualizing. You don't stand outside yourself thinking, well, am I being reasonable in desperately leaning on faith? Instead, you go to church and you get on your knees and you beg God for help. Then the rest of the time, when the only answer that's forthcoming is that you’ve got to keep going and keep doing weird shit to try and get better.
The rest of the time you tell yourself, all right, life is full of suffering. And if there is a God, then suffering is necessary somehow for our purgation and transformation, and you have to deal with it and hope that in the mercy of God, you come out the other side. And that's not necessarily a helpful way of thinking. It's not always a comforting one, right? Because, maybe your purgation and suffering is going to be lifelong. There are obviously people who get sick and never get better. Even if they don't die, they live with chronic illness for their whole life. There's no promise from that kind of theology that actually God, at some point, is just going to take away the pain and your life will get back to normal. But it's still, I think from a psychological perspective, still more helpful than treating this kind of experience as randomness. It's just easier to carry something that you think is a burden that's been given to you than something that's just been dropped on you for no reason.
That's the way I would see religion as well. It would be less to me some sort of pleading God for mercy or a miracle, and more framing my experience in some greater moral or narrative framework that seems to make sense.
Well, but you can do both. To the extent that I was trying to analyze the situation, I was doing the latter, what you just described. Trying to say, okay, this is the story of my life. And this thing has happened to me after a moment of pride and hubris, where I was lavishing all of my columnist earnings on this ridiculous rural retreat fantasy. And so what kind of lessons do you take from that? How has God redirected me? You have all of those thoughts. But then you're also just begging for help. So it's both, and not either or.
One thing that also struck me, and again this is just how your book selfishly resonated with my own personal trajectory…I don't talk about it much, but at one point I did deal with a pretty serious bout of clinical depression. I was also in this odd rural situation on Orcas Island which made it even harder to deal with, and it was similar in that there was this big black hole, this big black nothing, that you had to wrestle with every day. One of the few sources of solace was intellectual life and writing and reading. When your body starts failing, I at least become a total Gnostic, which means I suddenly believe that the realm of the spirit is what predominates over the physical. We should all be living either on some hard drive, as the Transhumanists want, or in some divine firmament as mere consciousness alone, while the body is nothing but corruption and decay.
It's interesting because I definitely became more of a dualist in the oversimplified Cartesian sense through this experience. Because, to the extent that you're in a dark place and yet your mind still functions, and you can sort of inhabit intellectual life and debate. You really do feel the sense of your mind as something that is contained in, but somehow separate from, your body. Which is not something that happens in a perfectly healthy existence. Obviously, you feel your mind is separate from your body to some extent, but there isn't that kind of bifurcation that you really feel when your body is like a prison.
You have what feels like your true self in there, but in my case the body was like this cage of pain, of muscles and bones and so on in pain. As a good Catholic, rather than a Gnostic, I try to think of this in terms of the necessity of the bodily experience. Where it's like, okay, this is temporary. At some point, even if you don't get better, your mind will be released. Your soul will be released from this experience, but it can't just be a prison. It can't just be like this demiurge or whatever has imprisoned you here and you need to get the upload and then all will be well. You need to accept that you're in this body now in this kind of suffering for a reason.
And there has to be a specific good that that comes out of it. So I almost ended up with this kind of bias against strategies of prayer and meditation that are designed to separate the mind and body and soul bit by bit. I was more in a place of thinking like, okay, this is what God from his imperium is giving you. And you have to live with your body for as long as you can. Although if you read about, for instance, near-death experiences—I've done plenty of weird reading in the last five years or so—often in those accounts, there'll be this sense of overwhelming release. You have this feeling that you've been in this body that is dying or failing in some way. Then there's this moment of lift-off. When you're chronically ill, you can sort of imagine what that liftoff might feel like and look forward to it at some level.
It’s worth mentioning that Gnosticism is in fact a Christian heresy.
In this house we are against Gnosticism.
Out of curiosity, are you in the farmhouse you bought? The impression I got is that you actually ended up selling it fairly quickly.
Yes. Well, we didn't sell it quickly, but we left it after two years, and then it took a good deal longer to actually sell it. But we are now in walkable urbanism, accepting New Haven rather than Washington. So, we're in the town where I grew up, where I never expected to return full-time, and yet we've been here for, I guess, four years. And it's been good overall. We weren't supposed to live the Wendell Berry agrarian return to the land, and we're not, I can promise you, we never will again.
This is not just a tale of woe. You also had a child in all the story.
Yes, yes. We had a fourth child. And that was of course at a certain point, a source of deep uncertainty about whether we could have another child. Was I well enough? Had I gotten better enough? Would I fall off a cliff again? We worked our way up to being brave enough to take the leap of faith and have the child, and of course, a month and a half before she was born there was a small global pandemic that you may have heard a thing or two about.
Wait. Ross, what pandemic? I've just been sitting here doing my Substack thing. I haven't even noticed…what the hell? What do you mean?
Antonio, it's the pandemic. So there was a pandemic, and I brought home COVID from the book tour for The Decadent Society and gave it to my eight month pregnant wife. It was very unpleasant. We came through it, but then Rosemary, our fourth child, was born the day deaths peaked in Connecticut inside this totally empty hospital. Had we known what was about to happen in the world, we probably would not have conceived a fourth child. But in fact we're extremely happy that we did, and you can draw whatever lesson you want from that. But, that's one of the places where the story in the book ends.