(RNS) — New York Times opinion columnist Ross Douthat was at the top of his game in 2015 when he began experiencing strange and painful symptoms, a turn he describes in his beautiful new book “The Deep Places: A Memoir of Illness and Discovery.”
The expected subtitle might have been “a memoir of illness and recovery,” not discovery. But this is no ordinary memoir. The book’s jacket copy nails it: “portraying sickness as the most terrible of gifts,” it reads, the book “teaches you to appreciate the grace of ordinary life by taking that life away from you.”
This interview has been edited for length and clarity. — JKR
How did you contract Lyme disease, and why did you have such a hard time getting diagnosed?
About seven years ago, my wife and I were living in Washington. We were both from Connecticut originally, and we had a fantasy plan where we were going to move back there with our kids and live a rural, picturesque kind of life.
We bought a 1790s farmhouse near my wife’s hometown, about an hour and a half from New York. Just after we did the inspection on the house, while still living in D.C., I developed a progressive series of extremely bizarre symptoms. It started with a red swelling on my neck that was diagnosed as a boil. It eventually went away, but in its place, I got pain in my neck and head, and then all over my body. My bowels stopped working. I was unable to sleep. The pain would move around into different muscle groups and joints.
This was the mystery phase of the experience. Because we were still in Washington, I was seeing doctors in the city. I probably saw 11 doctors in the span of a couple of months. None of them could figure out what was going on. The blood tests all seemed to be negative. I went to various specialists. In each case, there was a prodding toward a more psychiatric diagnosis — that I was under stress, and this was all a product of a weird mind-body interface.
It was only when we made the move to our no-longer-necessarily-a-dream-house in Connecticut and I started seeing doctors up there that they said, “We see weird cases like this all the time. You probably have Lyme disease.” The disease is named for a small town in Connecticut, where it was discovered in the 1970s. It’s carried by the tiny deer tick, and it has a whole array of very strange symptoms, much like the ones I was experiencing.
But then you go from mystery into controversy when it doesn’t go away after a course of antibiotics. Officially, you’re supposed to take antibiotics for four to six weeks and you will feel better. And if you don’t feel better, according to the CDC and others, nobody’s really sure what’s wrong with you.
And you did not get better.
I did not get better. I eventually entered into the world of what’s called chronic Lyme disease, a condition that is not officially recognized but has a lot of doctors who try to treat it. They say, “We think the disease is still there, that the bacteria is very good at hiding, and there are lots of weird confounding factors, like ticks carry multiple pathogens so you can get infected with several things at once.” And they treat you with a range of antibiotics over a longer period of time.
A big part of the book is an account of experimenting at the fringes of medicine, trying to get better while being stuck in essentially a Stephen King scenario. We’re in this beautiful antique home overlooking a meadow with three acres and a barn, and I’m in horrible pain and a shadow of my former self. My wife is pregnant and we have two small children. We’re both writers. We don’t see anyone. It’s winter. It all has vibes like “The Shining.”
I’m so sorry. You do a beautiful job of demonstrating how it feels when the medical system has failed, and symptoms and experiences aren’t believed.
The metaphor I used in the book was an image of a house. Most people who are reasonably healthy and have good experiences with the medical system live in a nice, well-lit, HGTV kind of living room with hardwood floors. But if you get a disease and medical science doesn’t help you or tells you things that just aren’t borne out by your own experience, you fall through the floor and end up in the basement — or, if things get even crazier, in this kind of subbasement where you’re groping, looking for landmarks, looking for help, looking for ladders back up to health.
When you have that kind of experience, inevitably there’s a kind of crisis of faith. We all have a lot of faith — for good reason — in scientific progress. But when you get sick in a way that the medical system can’t effectively respond to, you start to wonder what else might be true that doesn’t fit the official paradigm.
Your religious faith played a role in your search for a cure, and you have some interesting things to say about prosperity theology.
This is one of the things I’ve written about — the deep influence of health and wealth theology on American life. It’s more theologically and culturally important than people give it credit for. There’s a New Age, left-wing version and a Republican, middle-class version. It also has strong influence in Hispanic and African American communities.
I’ve written about it somewhat sympathetically, but ultimately in critique of its theological deficiencies. But at an intuitive level, I also bought into it. I had this meritocratic script where you are master of your own fate: You rise because you deserve to rise. And the way that script interacted with religion was that there was this sense that if you do things right, God will help you fulfill your ambitions.
All of that gets shattered when you do the thing you think you are supposed to do and it leads to Overlook Hotel territory. I went from having an intellectual critique of the weaknesses of prosperity theology to a visceral experience of where that theology runs dry. Anyone who goes through this kind of trial has to accept that, whatever God has in mind for you, it’s not the unbroken path to the American dream.
A couple of times in your terrible despair, there were moments of grace. One came when, after looking for sand dollars at the beach all your life and never finding one, you prayed this desperate prayer: “If I find one it means I will get better.” And then you saw one at your feet. What do you make of those moments?
I wouldn’t say that I had overtly supernatural experiences, exactly, in the course of this illness. But then these things happen where it feels almost like God is winking at you. Finding a sand dollar on a beach is obviously a completely normal experience that can be explained perfectly well through material cause and effect. But after spending your entire vacation in pain and imagining that finding one would be a sign of divine grace, it’s a rather intense coincidence.
Much of how we live our lives, for both religious and nonreligious people, is reacting to things that happen that are not miraculous but still feel providential. Everyone is in some sense looking for a way to understand the story they find themselves inside. They’re looking for signposts. Sometimes the signpost is saying, “You’re not alone, keep going.” Right? It wasn’t like the sand dollar had the chronic Lyme disease cure written in Sanskrit on the back.
You talk in the book about how your Catholicism helped you understand your suffering in an almost redemptive way.
This is the opposite pole from the prosperity gospel, wherein old-school Catholicism sometimes gets accused of going too far in romanticizing suffering. But when you’re actually suffering, the idea that your pain has some strong purpose in your life — that it has been permitted by God so it can be turned to some good that you yourself don’t understand at the moment — that’s a tremendously psychologically important thing to carry with you.
I can’t imagine going through the experience without having that belief somewhere in my mind as a spur to just take the next step. The macro-level problems seem overwhelming, but it’s important to keep going. The ordeal is something you’re being asked to do, for some reason. It’s not just randomness.
What are you hoping that readers will take away from the book?
I think the simplest answer is that for people who have had experiences like mine — a wide range of strange problems that ravage your life and don’t go away — I’m hoping it offers solidarity. Even though I’m not 100% better, I have climbed back a very long way from the depths.
And for people who haven’t, I hope it opens up a wider window into what it’s actually like. There are a lot of ideas from the outside about chronic illnesses — that it’s a sort of mild tiredness where you’re on a fainting couch, or that it’s like ordinary pain, but a little worse. But it’s not like that at all. It is a completely different kind of life from normal. Hopefully, by reading this book, you can get closer to a sense of what it’s like without having to go through it yourself. Because what is literature for, if not to let you experience a range of human experiences that you wouldn’t want to go through directly yourself?
Other RNS author interviews:
Alice Fryling: The spiritual gift of growing older (yes, really)
Jacqui Lewis: In a divided America, no one is saved until everyone is saved
Jon Pavlovitz: Outgrowing your religion