PloughCast 20: Suffering, Reality, and Rehumanization

About This Episode

Peter and Susannah discuss Aimee Murphy’s Rehumanize, an organization dedicated to a consistent life ethic, and the intersection between the pro-life movement and the disability rights movement.

How does the utilitarian obsession with quality of life and rejection of those who suffer attack the dignity of all of us? And how can an awareness of the existence of sufferers pull us out of our own meritocratic prisons?

Then, the hosts talk with Ross Douthat about his chronic Lyme disease and the way that official science can be limited. What does the experience of suffering teach us about the reality of the divine, and how do these liminal states open us up to transcendent reality?

[You can listen to this episode of The PloughCast on Apple, Spotify, Amazon Music, Google or wherever you get your podcasts.]

Recommended Reading

• Ross Douthat, The Deep Places: A Memoir of Illness and Discovery
• Ross Douthat, “Hide and Seek with Providence”
• Aimee Murphy, Rehumanize International

Transcript

I: Aimee Murphy: What Is Rehumanize?

Susannah: Welcome back to the PloughCast! This is episode two of the series covering the latest issue of the magazine, “Made Perfect.”

Peter: Today we’ll be speaking with Aimee Murphy of Rehumanize International, and then with Ross Douthat. I'm Peter Mommsen, editor in chief of Plough Quarterly.

Susannah: And I'm Susannah Black, senior editor at Plough. This is the episode where we talk about how to be human, how to find out what’s real, and how to suffer. Now we’re happy to welcome Aimee Murphy. Aimee is the founder of Rehumanize International, a secular organization dedicated to creating a holistic culture of life.

Aimee, welcome.

Aimee Murphy: Thank you so much. I’m so glad to be here with y’all.

Susannah: So can you just sort of tell our listeners who you are, what the work that you do is, and maybe a little bit about how you got to be doing it?

Aimee Murphy: Yeah, so I am the founder of Rehumanize International. I founded the organization as Life Matters Journal back in 2011, before I was married, back when I was Aimee Bedoy, and I really started the organization because I had just graduated from my undergrad degree in ethics, history, and public policy at Carnegie-Mellon University. And while I was there, I had been the president of the pro-life club, Life Matters, for two years, and I was working part-time at an urgent care, a healthcare facility. And I was like, “Oh, I can’t be done doing human rights work just because I’m done being a student activist, just because I’m done with my education. So what can I do?”

When I was sixteen years old, I had been in this on-again, off-again relationship with a guy. And after he raped me on Valentine’s Day, a couple months later when I thought I was pregnant, he threatened to kill me if I didn’t have an abortion. And that moment so deeply unsettled me that I made it my goal to go and unsettle the rest of the world. So here I am, working the front desk at a little urgent care center and twiddling my thumbs, basically, in my free time going, “Okay, well, I still care about all of these different issues of human rights, but I have no outlet for that. So what can I do?”

And basically, I decided that there was a niche in the consistent life ethic movement that wasn’t being filled, that we needed to be educating the next generation on this consistent philosophy of nonviolence, of human dignity. And I asked some friends of mine in, I think, like an atheist and agnostic pro-life group and then LGBT pro-life group on Facebook, “Hey guys, I want to do something. I’m not sure what it is and what it’s going to look like, but I think I want to start like a magazine or a journal or a conference. I don’t know. What are your thoughts?”

And the guy who became co-founder of the organization, Nicholas Neal, he messaged me. And that day, August 15, 2011, we decided that we were going to start a magazine. It was going to be called Life Matters Journal. And we got started on the very first issue that day. We published our first issue, I think only a month later, in September. And honestly the ball just kept rolling and picking up steam. It really was a sort of avalanche sort of movement where other people saw the energy and the consistency and the authenticity of our organization, and really took that opportunity to allow the consistent life ethic to infuse their movements with this deeply authentic care for the human person in all stages and all circumstances.

Peter: Aimee, could you break down for our listeners: what is the consistent life ethic? Is that a religious thing? Is that a philosophical thing? What does it mean? And what’s in and what’s out?

Aimee Murphy: Yeah. So our understanding of the consistent life ethic at Rehumanize is a philosophical and even a secular understanding that each and every human being has the same inherent human dignity. That same inherent human dignity means that all of us are equal, that all of us deserve to live free from all forms of aggressive violence. So that means an opposition to forms of legal aggressive violence, like abortion, like war, like torture, police brutality, euthanasia, and assisted suicide, embryo destruction, like in embryonic stem cell research, and like happens in IVF labs across the world, but also other forms of abuse, trafficking and systemic dehumanization that sort of seep their way into the culture and the laws of this world.

So at Rehumanize we focus pretty exclusively on those issues of legal violence, legal aggressive violence. So generally more on like war and the death penalty, abortion, embryo destruction, while still also acknowledging that even if we abolished all forms of aggressive violence in the law, that there would still be work to do to uphold the dignity of every human being in the culture, that we would still have to work on ending dehumanizing poverty. We would still have to work on ending racism and sexism and ableism, et cetera.

Susannah: I’m interested in the fact that Rehumanize is a secular organization. You yourself, if I’m not mistaken, are pretty Catholic. Is that right?

Aimee Murphy: I am. Yeah. However, when I became pro-life when I was sixteen years old, I was an atheist and I was and still am openly queer. And so when I started Rehumanize as Life Matters Journal ten years ago, I was really adamant that I wanted it to be a space where people from all sorts of different backgrounds would feel comfortable working alongside each other for human dignity, for an end to violence. Really knowing that if we want to create a culture of life and a culture of peace that we need everyone to be on board. We need everyone to believe that violence is contrary to human dignity.

I often use the analogy of the burning building, and I use this when talking usually to conservative pro-lifers who don’t want to include atheist or LGBT pro-lifers in the movement. And I explain to them if we consider abortion, the killing of 800,000 children every year in this country, like a burning building, and you have a fire company that rolls up and they’re in charge of delegating firefighters to different parts of the building to put the fire out, and you have the fire chief who’s standing there and he’s standing there with a checklist. And he’s like, “Okay, are you a conservative Christian? Are you straight? Okay, you can go in the building.”

But if you answer, “No, I’m an atheist and I’m queer.” And the fire chief’s like, “No, you get out of here.” You would probably question the sanity of that fire chief and you’d be like, “What are you doing? Because there’s a burning building here. There’s children who we can save if we work together and you’re sending people away? Why would you do that?” So I wanted to make sure that this movement would be one where we have every human working for the dignity in life of every human.

Peter: Ever since the conversation began around the current Dobbs case before the US Supreme Court there’s been, of course, a lot of worry, especially on the pro-choice side, about the outcome, which we don’t know yet. And also accusations of bad faith on the part of the pro-life side when there’s been arguments for a more adequate social safety net, for a sort of across the board support for women and for children and families. Have you encountered similar in advocating for a consistent life ethic? Because a consistent life ethic is represented by no constituency in American politics or the politics of most Western countries today.

Aimee Murphy: Yeah. Politics is hard. Almost impossible. It’s very hard to navigate the current political landscape. I’m wearing my “politics kills, choose life” shirt that kind of explains in visual form that both of the major parties that we have today really pick and choose which humans they support and which humans they throw under the bus. Because on the right, yes, you might have these politicians that support ending abortion and support ending euthanasia and assisted suicide, but at the same time have been supporting hawkish wars or have been dehumanizing these refugees and immigrants who are attempting to make a home here in the United States, or have even been dehumanizing families that rely on the social safety nets like welfare, like SNAP, or like WIC, et cetera.

Or disabled people. I have a friend who is an ardent pro-life activist who has been working in the movement since the ’90s when she was a college student, and she is pretty severely disabled. And consistently when she goes into conservative pro-life spaces she’s harangued for being on disability and “relying on the government to support her,” when the systems that exist right now are actually quite harmful and impossible to extricate oneself from if you are disabled. If you make too much money, your benefits and your healthcare get taken away from you, but if you don’t make any money, you won’t be able to afford even your Section 8 housing. There’s a very tight spot that a lot of disabled people are thrust into.

And yet on the other side of the political aisle we have generally left-wing liberal Democrats who might support these social welfare programs, might support disability, might support the rights of immigrants and refugees, though the Biden administration has extended Trump’s “stay in Mexico” policy and made it even more harsh, so that’s questionable. But at the same time, they support the violence of abortion. They support this dehumanizing and ableist system of assisted suicide. So we’re really in this tricky place where we want to be supporting the human dignity of all in all stages and all circumstances, but the political options that we have are wholly insufficient. They’re honestly, I don’t know if I want to say malicious, but they’re just completely missing the mark by being inconsistent and not supporting this human dignity across the board. I don’t know if that answered your question.

Peter: Well, I mean, it did, but obviously you’re in this and you’re seeing things that encourage you. You’re seeing the dial move some places. Could you talk a little bit about that? Where is the forward movement from your point of view?

Aimee Murphy: So from the interest and the movement that we’ve seen from a lot of young people, I think the data shows us from Pew and Gallup polling that millennials and even zoomers tend to be less religiously inclined and more LGBT friendly, but also less politically affiliated, less partisan affiliated. And I think what this points to is a desire for authenticity, a desire for consistency. When we look at religious disaffiliation, I think what a lot of that points to is these young people who are sick and tired of being told one thing by religious authorities and being shown a complete different thing by the structures that exist. And so they’re sick of that hypocrisy, that inconsistency, that inauthenticity.

The same thing goes for politicians who make promises out of one side of their mouths and then do something completely different. Or respect humans in some cases, but not in others. There’s, again, this frustration with hypocrisy and inconsistency and inauthenticity. At the same time, when we see greater support for the LGBT community, for communities of color, I think what that is pointing to is a desire for the respect, value, and protection of human dignity. And so I think if we continue running in that direction, with our whole selves, authentically and consistently, upholding human dignity, I think that there’s nothing that can hold us back. That what these young people want is exactly what we are offering by upholding human dignity consistently in all stages and all circumstances.

And this is something that I’ve seen all on the ground, when I’ve had conversations on college campuses, even at high schools, on the street with people while I’m holding a sign or handing out educational material. A lot of people will say, “Wow, I’ve never heard of this philosophy before. I’ve never heard of the consistent life ethic. This is so interesting to me. I didn’t know this was a thing. I have felt so alienated from partisan politics or my religion or whatever. I guess I didn’t recognize that this was a possibility.” And that is always encouraging to me, to see people discovering the consistent life ethic for themselves and recognizing that you don’t have to pick and choose which humans you throw under the bus. You can authentically stand for human dignity for all.

Susannah: That’s obviously, I mean, you are phrasing it in a secular milieu and using secular arguments, but it’s obviously very flavored by and inspired by the Catholic idea of the seamless garment of life. And, I wonder, I don’t actually know this part of your story. How did you get from secular pro-lifer to Catholic? What happened?

Aimee Murphy: Gosh, I mean, I went to college. At the time I was dating someone who was evangelical-ish. And so I was learning more about Christianity from kind [of] like a Baptist/nondenominational perspective. And I wasn’t sure whether or not I was convinced about it. So I was reading on various different religious traditions because I felt like there was something bigger than me, eventually, like I got to this point where I was like, “Okay, I’m agnostic-ish. I’m not sure what I actually believe in, but I’m pretty sure it’s not nothing.”

And I got to college and I was attracted to the Catholic Newman Center. And I was raised Catholic. My parents weren’t openly pro-life or anything, but it didn’t seem super attractive to me when I was a rebellious bratty teenager. When I got to college though – this is going to sound super silly. The Newman Center had an event that said that they were going to go curling, the winter sport involving Swiffers and rocks. And I was like, “Oh, heck, yeah. I am into this. This is so cool. So cool.”

And then a friend of mine in the architecture program mentioned to me that they had this thing called perpetual adoration every Friday and did I want to go with him and sign up for a time slot? And I was like, “Well, I don’t know what that is, but I am down to do things with new people and try to make friends.” So I signed up for a time slot at adoration, and went, and truth be told, I was like, “This is Jesus. I don’t know if I believe in other things, but I believe this is Jesus. And this is God.”

And learning more about the social teaching of the Catholic Church I was like, “Oh, they’re also consistent about human rights too. And this aligns with my internal conscience about general practices of nonviolence and upholding human dignity in general.” So I don’t know, like a combination of factors, but yeah, curling and adoration.

Susannah: That’ll do it. I mean, I had a similar experience of I was pro-life before I was Christian and it feels like it becoming pro-life kind of softened me up in some way. It was like …

Aimee Murphy: Yeah.

Susannah: It was sort of like it was one less hurdle to get over once I finally became Christian, but it was also kind of like when you see humanity for what it is, you kind of also start to see God for who He is in this weird backwards way. It’s very strange.

Aimee Murphy: Yeah.

II: Aimee Murphy: Pro-Life and Disability Rights

Susannah: So this is obviously for our disability issue. You’ve tweeted a bit about your own health issues and struggles with fibromyalgia and so on. I wonder whether you could talk about that with regard to the sort of discourse about the eugenics-y aspects of pro-choice stuff?

Aimee Murphy: So I was diagnosed with fibromyalgia, I want to say like four or five years ago now. And I’ve been dealing with chronic pain since I was in my early 20s but didn’t have a diagnosis for it for a long time, because in case you didn’t know, the medical system sucks in this country, and honestly around the world, when it comes to believing women about what they say, about how they’re feeling and their bodies, et cetera. So the more that I have attempted to come to terms with my own disability and need for things like mobility aids, the need to step down as executive director from Rehumanize this past year, and move into a part-time role because of my chronic illness, the more I have really tried to dive deeper within the disability movement, also understanding that it’s not something that I am native to.

I wasn’t born with a disability. Despite being born six weeks premature, I was born happy and healthy and totally fine. And so there is a difference, I guess, about coming to it as a young adult than coming to it straight away, like in the womb or at birth being diagnosed with a disability like some of my friends who have spina bifida or cystic fibrosis or cerebral palsy, for example. So I do just want to acknowledge there is that difference.

At the same time, there is an interesting, I mean, opportunity, I guess I would say, as both someone who exists in disability rights spaces and in pro-life spaces to be countering this very harmful and eugenic idea that we’re only valuable based on what we’re able to do or what actions we’re able to perform in order to serve some usually utilitarian purpose.

I actually had a discussion online this week with someone else who is disabled and has a chronic pain condition. And their argument was extremely eugenic and there were several of us who were involved in disability justice spaces who were talking with this person and trying to tell them like, “Our lives matter even if we exist in a state of chronic pain. Our lives have dignity and worth even if nobody knew us, even if we didn’t have a social history.”

But it was fascinating in one of those ways where like you’re watching the most terrible car crash and you’re like, “Oh my gosh, I hope everyone’s okay but how in the world did that happen?” It was fascinating in the most horrific way that this disabled person was basically saying, “I hate my life because of my chronic pain and therefore I want to die. And therefore I should not have been born. In fact, my parents deciding to not have an abortion and not kill me in the womb is an act of harm and an act of trauma against me.” In fact, they even used the words “act of violence.”

And of course there were several of us who were explaining, “Yes, your chronic pain is terrible and we should be doing more within the medical sphere to offer palliative care and to offer nonviolent solutions to the pain that you are experiencing. But ultimately to allow a person with a disability to exist is not an act of violence. It is the promotion of our inherent human dignity.” And that there’s no level of ability, no threshold that we have to cross, in order to retain our dignity as human beings, because it is a quality that’s inherent to us. It’s part of just our existence, our being, our essence, is that we are a member, a living member, of the species Homo sapiens. And so we therefore deserve to live free from violence. And abortion functions through intentional starvation or dismemberment or poisoning of that prenatal human. And that is an act of violence. Allowing someone to live and to make their own path is not an act of violence.

And this is something that comes up very often in discussions of filicide and then euthanasia and assisted suicide as well. And it’s interesting how when it comes to those issues, disability justice organizations are more likely to speak out and say like, “Filicide is wrong. A caregiver killing a disabled dependent because they pose a ‘burden’ is dehumanizing. It’s harmful. It’s violence.” But when it comes to violence in the womb, a lot of these disability justice organizations tend to be more left-aligned, and so are more comfortable with the violence of abortion, even if they are somewhat squeamish about the idea of disability selective abortion.

These eugenic practices really harken back to these dehumanizing experiments that were waged on disabled individuals under the Nazi regime in Germany, but also even further back in the United States, there have been, and even continue to be, eugenic sterilizations, and sometimes even experimentation on and killing of disabled individuals because of the “burden” that they presented to their parents, their families, the communities and caregivers. And that really represents, I can’t even put it into words just how harmful and ableist a standard that sets for today when the ADA still isn’t even properly practiced, when we’re faced with an opioid epidemic that ends up treating disabled patients who have severe chronic pain as addicts when by and large they are not. It results in not only these eugenic abortion practices, but also the common idea that to have a disability is to be less worthy of life and care, which then translates into a push for assisted suicide for those of us who have intractable pain or have terminal illnesses.

The thing I always like to say is [that] the human existence is terminal. All of us are going to die at some point. The question is how and under what circumstances, and violence, it doesn’t stack up against our human dignity. I do think that there is an underlying positive idea, a good intention underneath a lot of this idea of “death with dignity,” that people don’t want others to exist in pain. And this is what the person on Twitter that I was arguing with was getting at is that an existence that is just steeped in pain and suffering can also be harmful, and this I can speak for my own personal experience, that intractable chronic pain that lasts for days grates on you. And there are some days when I just think to myself, “I wish that I could stop existing. I wish that I could step outside of time and space and just rest and not have to be in pain.”

And so I do think there is a need to address that issue of pain, but that the answer, that response to human dignity in a holistic way is not that of violence, it’s not killing, it’s not harm. It is palliative care. It is accompaniment. It is compassion, but it’s not violence.

Susannah: That is a profoundly, I think, hopeful and hospitable message. And I thank you so much for your time. And I’m just really grateful for the work that you do, and to you for taking the time to talk about this and for being willing to share your own experience as well. Just to let you know, obviously all the time I run into people saying, “The pro-life movement only seems to care about people, care about babies before they’re born,” or, “The pro-life movement is hypocritical.” And partly because I’ve kind of been involved in more the areas of the pro-life movement that I feel like you represent, that’s just not been my experience. And I don’t know, thank you for the work that you’ve been doing and thank you for what you’ve helped to build in the last ten years.

Aimee Murphy: Thank you for saying that. I’m always grateful to hear that the work that we’re doing is actually making an impact. And I personally am hopeful that the future of the pro-life movement is going to upend the conservative, white, cisgender, straight, Christian trope, and that unfeeling, distanced, bootstraps ideology, and understand that if we want to build a culture of life, that mutual aid and solidarity and community are going to be the cornerstones of that culture. I don’t know. I’m hopeful for the road that lies ahead of us. I think if we can build that community, then we can be entrenched in hope instead of despair and this alienation and dehumanization and violence.

Susannah: Thank you again. And I’ll catch you on Twitter.

III: Ross Douthat: Chronic Lyme, Official Science, and Doing Your Own Research

Peter Mommsen: Well, we’re delighted to welcome back to The PloughCast Ross Douthat, the New York Times columnist, author of many books, including most recently, The Deep Places: A Memoir of Illness and Discovery, which we’re going to be talking about today. And of course he contributed a beautiful essay to our latest issue on disability and ability that is adapted from that book, called “Hide and Seek With Providence: Suffering from intractable Lyme disease, I look for meaning and fear to find it.”

So I’m not sure if that editor-supplied-tagline is a good summary of the book, but you certainly write in your book about suffering from intractable long-term Lyme disease and that whole journey. Most of the time you write as a pundit looking at things from the outside, and in this book, you tell a story that happened literally on the inside. How did it kind of feel working your way into a book like this, Ross? It was a beautiful book and some of the best writing that I’ve seen for a long time.

Ross Douthat: Well, that’s incredibly kind. And thank you so much, obviously for having me back. It’s sort of an odd thing to say about a book where the story is sort of – I think harrowing is a fair word for some of the material in the book – but as a writing experience, I really enjoyed it. And some of that was probably just a certain kind of catharsis. It’s a very strange thing to have this kind of public-facing identity as a writer for years and years, and also have this thing that’s an all-consuming part of your life, which is to say not just the experience of illness itself, but all of the controversy and arguments and material stuff around it and not ever write about it. And I always intended to write about it at some point, but I tried to keep it out of my writing for the most part for a long period of time.

So probably there was some relief to finally do it, to only write about it, but also as you said, most of my work is punditry. I’m not going to say that punditry is the lowest form of writing, but I don’t think it’s the highest form. And at the very least, it was just nice to do a kind of writing where you could put in a paragraph of description of the New England countryside and not feel like you are wasting the reader’s time. So to the extent that the book has sort of literary pretensions, pursuing those pretensions was an enjoyable part of writing it I would say.

Peter Mommsen: And there’s a very nice piece of New England countryside at the very end of the little excerpt in Plough on the Maine coast, which I can recommend. But could you give just the quick version of the story in the book for listeners who should hasten and get themselves a copy if they haven’t already?

Ross Douthat: They should rush! But if on the off chance they haven’t yet … this is a book about basically how my wife and I with our then two kids, she was pregnant with our third, tried to buy or did buy our dream house in a somewhat rural part of Connecticut in 2015, after living for many years in Washington, DC. And we had this whole plan to live there in the countryside and raise chickens and have stone walls and be outdoors all the time and escape from the pressure and corruption of the big city, all of these kind of bucolic fantasies. And instead of living them out, we lived out a kind of Stephen King story where I became very, very ill– while we were actually still in Washington, DC, we had bought the house, done the home inspection, but we had several months before we were actually moving.

And I had just a totally bizarre illness, pain all over my body, insomnia, weird tingling and phantom heart attacks, trips to the emergency room, all of these things. No doctor in DC could figure out what was wrong with me. And it was only when we moved to Connecticut and started seeing doctors up there that it became clear that I almost certainly had Lyme disease, which is the famous Northeastern scourge carried by deer ticks. And so at that point, the story, it sort of starts as a medical mystery, but then it enters into the realm of medical controversy because there’s a huge furious, multi-decade argument about how to treat long-term Lyme disease, what to do for people who get sick and don’t get better after a short course of antibiotics.

And I didn’t get better after a short course of antibiotics. So I had to enter into that controversy, try to figure it out intellectually, but then more practically figure out how to survive and over the long run get better while living both physically in the country and sort of off the map of modern medicine or official medicine, you might say. So that’s sort of a sketch, I think, of what the book is about.

Peter Mommsen: One piece of that, that of course a lot of people I think can relate to, is what makes a story credible. What makes a person’s account of their experiences believable. You tell about it in the book: before you knew what was going on, the word that would rapidly spring to a lot of people’s minds is psychosomatic: It’s all in your head. This is what many people are told. One of my siblings had a condition like this for years and the advice from everyone was we can’t see anything, there’s nothing there.

After the book comes out, a certain number of the reviews have repeated the same line. “We’ve read the whole book, it’s a beautifully written book, harrowing obviously, the man suffered. We’re still not quite sure if it was really a thing there.” How does that make you think about what makes a story believable? What makes somebody else’s story believable?

Ross Douthat: Well, I think the challenge with an experience like this is that in trying to convey it, there’s inevitably a certain tension between being maximally persuasive and maximally honest. So the book, there is a version of this narrative that would spend probably more time than I do in the book on the scientific controversy around Lyme disease, the competing medical schools of thought and the research and papers and analysis that you can sort of sit and read as I have sat and read, if you’re trying to figure out whether it is likely that Lyme disease persists and can be treated by antibiotics or anything else.

And that part of the story, I think taken on its own, while it’s not going to persuade everyone, I think it is fundamentally persuasive. I think the basic idea [is] that the Lyme bacteria persists in people’s bodies, a lot of blood tests miss it, people with Lyme disease also get other infections from deer ticks that make it harder to treat, lots of people do get better if you do these really complicated, long-term antibiotic protocols– all of that is just true. It’s not true in the sense of being universally accepted, but it is in fact correct.

And I think it’s correct in a way that a totally disinterested person who sat down and read six books and twenty papers on the subject should be convinced by. At the same time, the experience of being sick with something like this is an experience where you yourself are plagued with self-doubt and uncertainty. Because you’re being told you don’t have a real illness, the illness inevitably has psychological consequences that then feed back into the physical and you’re trying to disentangle the two, so there’s sort of the basic burden of self-doubt, but then also you do crazy things when you’re sick like this.

I did the sort of basic thing that people do for long-term Lyme disease of seeing these doctors who will give you combinations of antibiotics and doing that for months and years. And that was, I think, crucial to my slow recovery. But I also had chiropractors put magnets on my body. I bought a machine that generates sound frequencies that are supposed to shatter bacteria inside your body. I had …

Peter Mommsen: That was a rare funny section of your book.

Ross Douthat: Right. There was comedy there. And the excerpt that appears in Plough is focused on the slightly more mystical things that happened, not sort of miraculous, but sort of tinged by Providence, you could say, in ways that a strictly materialist account would tend to discount.

So in order to be honest about an experience like this, you have to talk about that stuff because this is not unique to me. Anyone who has this kind of long-term, you-can’t-seem-to-get-better situation is going to try a lot of weird things and have a lot of weird and unexpected experiences. And so I think one of the challenges as a writer is figuring out how do you strike that balance between being as persuasive as possible on this sort of core scientific question and being as truthful as possible about all the weirder stuff that you did.

And obviously I think I was probably persuasive to some readers and the balance was less persuasive to others. And you can see that, I think, in some of the reviews. I think there’s also a sense of like the … There’s a certain kind of reader, I think, who probably thinks it’s in my head but isn’t going to come out and say it.

Once you’ve written a book like this, there’s a certain sense of like, “Well, we like Ross, he’s obviously been through a lot. We’re going to be respectful. We’re not going to be too explicit about our doubt.” So I’m sure there’s some of that out there in the response too. But I did decide early on in the writing to try and make it as honest a memoir as I reasonably could, knowing that the sort of strict persuasiveness of the book would at least at the margins be convincing, if not for a truly skeptical reader who just doesn’t believe in this chronic illness stuff at all.

Susannah Black: Your experience seems to invite, and you almost endorse almost a mythological reading of what happened to you. And it seems to me that there’s something interesting about what that might say about how reality actually is. You could read chapter seven, the big weird chapter, and think, “OK, this means that this is more likely to be psychosomatic or this is more likely to be an overwrought imagination phenomenon.” But the other way to read that is – the world actually is a mythological place. We are living in a world where deer ticks and the resurrection of Jesus and living out in a Nathaniel Hawthorne-style story, the actual material reality of a deer tick might also intersect with living out a kind of intergenerational archetypal saga. Does that ring true to you at all?

Ross Douthat: Yes. That’s what I think. And so that’s sort of apparent in the book and it’s something that I thought intellectually going into this experience since I was already a religious person who had a somewhat mythological view of the construction of reality. So again, the skeptical reader can look at that and say, “Well, of course Ross Douthat, Roman Catholic, is not just looking for signs, for hints of Providence in his day-to-day experience, but also interpreting his own story so that it fits in with these kind of patterns of hubris and punishment and so on and so forth.

And that’s all perfectly fair. At the same time, when you’re inside that kind of story, and that is actually what seems to be happening, it’s sort of hard to escape. Like we really did buy this house as both a kind of culmination of a sort of secular ambition where I had gotten this dream job as a New York Times columnist and my wife had – her family had fallen on hard times living in this town in Connecticut, but now we had money and we were going to return in triumph and buy a big house there. So we really did have this sort of somewhat hubristic “we are masters of our own fate” vision that really did run aground on this illness that is like this sort of Stephen-King-style-secret hiding behind the bushes in one of the most prosperous parts of the country. All of that really happened.

And then these sort of weird things where I found the bump on my neck that I’m pretty sure was the remains of the tick bite literally in the same five-minute window when my wife came into our bedroom carrying the positive pregnancy test for the birth of our third child. Those kinds of synchronicities were real. They just happened. And they’re open to various interpretations and they can certainly be interpreted through a disenchanted lens but the substance, the archetypal family patterns repeating themselves, all of these kinds of things are just part of the story. They’re just part of what actually happened to us.

Peter Mommsen: Before we get a little more into that, I’d just be interested and this question raises itself on the hard science side. Not the experiential side, but just the experience of being forced to become your own investigator into the realities of Lyme disease and especially the varieties of it that aren’t seen by medical establishment, science. How did that research project that you were forced into, how does that inform or how has that changed how you think about the big medical establishment story of right now, which is obviously the pandemic, and trying to think through what is the reality of the pandemic truly? How did that journey change not just your trust but also just the way you think about science and how it works?

Ross Douthat: Yeah. The first thing it does is give you a really clear sense of the difference between science as an investigative method and science as a sort of official bureaucratic system. Because again, while there is lots of weird stuff in the world of Lyme disease treatment and I did a lot of weird and fringy things, the core theory of chronic Lyme disease is deeply scientific. The people who are invested in it are doctors and researchers. They have experiments, sometimes incredibly fascinatingly designed experiments, and research programs behind them. And the claim that they are making it’s not a weird supernatural claim, it’s a really basic and simple claim that if someone has a disease and you treat it and the symptoms persist, you should continue treating it.

This is not a sort of outlandish or outré claim. So encountering that, seeing this sort of outsider faction as a group that was doing real science and seemingly getting real answers, and yet was unable to translate their work into the realm of official Centers for Disease Control, medical-best-practices consensus, I think it tells you something really important about how scientific systems, the systems that we put up for good reasons in certain ways to safeguard and protect patients from quacks and wild theories and risky procedures, that kind of system can also throttle or prevent real research, real science from happening. So that’s the most basic insight that I took away from this experience. That real science and official science are not the same thing.

And then as applied to Covid, you’ve seen this reality play out in a much more accelerated and public fashion than you see it play out in these intractable long-term chronic illness debates where you’ll have official science make some kind of authoritative statement about a fast-developing pandemic situation that then has to be walked back or revised very, very quickly in spite of the confident authority with which it’s offered.

And you’ve seen this from the beginning, whether it’s the World Health Organization or the CDC or anyone else just this gap between. …It’s not so much the gap between pronouncements that are wrong and realities that disprove them, it’s the gap between the confidence with which things are asserted, the sense that like medical authority is something that has to be wielded in order to show the plebeians that the scientists know what they’re doing and the fact that again, in a fast developing situation, the scientists are just not going to know what they’re doing until more data and more research comes in.

So there’s been a lot of I think case studies in that throughout the pandemic. At the same time I also think the pandemic has made me very aware that just because the system gets things wrong and outsiders get things right doesn’t mean that the outsiders are always right and you can always trust the outsiders. Like I think a lot of the outsider treatments for Covid that have been promoted don’t have strong evidence behind them. And I think at least some of the critiques of the vaccines and vaccination also don’t have strong evidence behind them.

And I think there, you can end up in this kind of dynamic where once you’ve had this sort of disillusioning experience with the medical system, you assume thereafter that the system must be wrong. And if someone’s outside the system, they must be more trustworthy. And in fact, there has to be some kind of balance that you can strike where you say, “Look, official science can err,” and you need to be constantly aware that it can err but it is going to get some important things right and you need to be ready to accept that it’s getting them right. And not just sort of default to skepticism in every controversy.

Peter Mommsen: Yeah. I mean this question of believability, I have in-laws in the Dakotas who are horrified that our family is vaccinated. They can’t believe that we would buy into the propaganda.

Susannah Black: You’re very easily propagandized.

Peter Mommsen: I know, I’m an easy one.

Susannah Black: Yeah. One of the sort of really vivid things that you talk about actually right at the beginning of the book is the experience of getting up in the morning in pain immediately and getting immediately onto Twitter, which is a really cursed kind of situation. But one of the things that you do repeat in the book is the sense of the distance between your actual embodied experience and the way that we all project ourselves as fully healthy, fully rational, basically disembodied members of the chattering classes. Can you talk a little bit about that? There seems to be something a little bit healthy about realizing that you’re not disembodied.

Ross Douthat: Yeah. I would say my experience with the internet during this illness was extremely complex because there was a layer of this awareness of the fundamental dishonesty involved in a curated self that whether it takes different forms, whether you’re on Twitter or Instagram or TikTok or wherever, but the act of curation involved in presenting yourself online is somehow different and I think somewhat more dishonest even than the ordinary curation, when we put on clothes in the morning and go out and act normally in society. And I could just see just in my own habits, just in person when I was really sick, I put more of that out there.

I couldn’t help it. And if you ran into me when I was at my worst and we talked for more than a few minutes, it would come out that I was sick like that, that would just sort of be part of my presentation. Sometimes in sort of over the top and embarrassing ways. And it wasn’t part of my presentation on social media. And I think that’s generally true. People don’t always know how to present their own sickness in normal flesh and blood interpersonal relations, but they project it more honestly than they do on online and social media.

And often people who are really sick just disappear from those worlds. So it’s like curation to an extreme, the self just evaporates from those worlds when they’re sick. And that experience fed into a lot of preexisting beliefs that I had about what’s wrong with the internet and what’s good about embodied existence, even though in this case, what was important about my embodied existence was that it was a living hell and totally miserable.

At the same time the complexity, first the internet was also really, really important to my recovery in the sense that there was all kinds of research and reading I did, all kinds of ideas that I found and connections that I made that just wouldn’t have been possible if I had gotten sick in 1977 or something. And so you have to hold in balance this sense of like, well the dark side of the internet reveals itself through this experience of disease, but the possible benefits of the internet also revealed themselves.

And then somewhere in between is this reality that I still deal with today when I … I’m like 90 to 95 percent better but I still have bad times and bad days and so on. And one reason I would start the day by diving into Twitter is that it would take me away from my pain a little bit. That was one way of dealing with the pain to sort of go into a world of abstract argument rather than a world of enfleshed existence.

And that was not what I wanted to do, I wanted to be embodied and away from … that was why we’d moved to the country. It was why we were getting out of this pundit world. And I was supposed to be getting away from my screens and so on, but the screens did also help me manage my pain in various ways that were probably important and helpful. So anyway, that’s [some] rambling thoughts on the meaning of the internet under these conditions of physical suffering.

IV: Ross Douthat: Suffering and Mysticism

Peter Mommsen: In the Plough piece and much more in depth in your book, you talk about how, although you’ve grown up in a very religious family wandering through various forms of American Christianity, you’d never yourself had mystical experiences or a sense of direct connection to the spiritual world. What about this sickness was actually helpful? You write about the sense that it was important to see a purpose in it. How would you describe the purpose in the suffering that you describe in this book? Did you ever come to an answer on that or more just a sense that there was a purpose, even though you couldn’t quite put your finger on it?

Ross Douthat: You do end up with a certain kind of circularity in thinking about suffering where in part, I think the obvious thing that I’ve experienced even more since publishing the book is that you develop a wider and different kind of sympathy and understanding for what other people go through. And so that’s not really an answer to why suffering exists in the world at large, but suffering does exist in the world at large, suffering yourself helps you understand the world and other people better, and I think ideally helps you help other people. I think I wrote this book for many reasons, but one reason was that I thought there was value in telling a story like this for the many, many other people who go through these kinds of things.

And it’s the kind of book I wish that I had had to read, as terrifying as it would’ve been, maybe when I was sick or at my sickest and didn’t have any sense of how I would actually get better. So that purpose, I think, as translating this kind of experience into something that helps you understand other people and helps other people in some way does seem like one sort of obvious thing that this kind of suffering can be for.

And then it changes you internally. And I don’t want to overstate that because life is a journey and there are parts of yourself that just sort of stay the same or sort of are still there waiting for you as you come out the other side of an illness. And when you’re at your sickest some of your faults are just inevitably exaggerated, so it’s not suffering the experience itself … so put it this way. Sorry, this is sort of fragmented. In my case, whatever I feel like I’ve gained from the experience, I’ve only been able to really gain because I’ve gotten substantially better.

And I don’t know that I would be able to say, if I were still as sick as I was six years ago right now, I don’t know if I would be able to have a conversation or say, “Honestly, here are good things that I’ve drawn from this.” And so maybe that is like what true sainthood is, is being able to draw good and become a better person without the suffering being lifted. But in my case, the experience of fighting for my life, and [my] health gradually getting better, was essentially interwoven with any kind of personal, psychological or moral benefit that I took from the suffering itself.

Peter Mommsen: I liked your comment that Jesse Ventura accuses Christianity of being a crutch for people in trouble, but in fact faith as a crutch can actually be a pretty good and important thing. Crutches aren’t all bad.

Ross Douthat: No. People who are dismissive about crutches are people who’ve never broken a leg. Apply that logic to metaphorical crutches and other life situations. And what Ventura is describing is a case for religion, not a case maybe that religion is true one way or another, but a case for why being religious can be incredibly important to surviving and thriving under the difficult conditions that basically every human being faces at some point or another.

Susannah Black: This is sort of in the more – just because I kind of want to hear what you say to this – based on everything you’ve experienced over the course of what you wrote about, what is the most exotic or strange thing that you think might be true about reality that you didn’t think was true before? Or what’s the weirdest thing that you think might actually be the case?

Ross Douthat: Well, just based on this experience alone, not in general: I think there’s separate things here. So I’m Roman Catholic: I believe as a doctrine of the faith in the Communion of Saints and the power of intercessory prayer. So that’s something I believed in before, but this illness was the first time in my life when I had actual experiences that gave any evidence that that might be true. Like true, not just in sort of a vague like say some Hail Marys kind of way, but in a like very specific “ask a particular Saint or even someone who has died and might be in heaven for some kind of help and seem to receive something in return.”

So that’s not a shift in my intellectual view of the world per se, but it’s a shift to go from a sort of highly intellectualized conception of how that relationship between heaven and earth might work and actually asking your departed great-grandfather to intercede for you. That’s one kind of shift.

I mentioned it earlier, but in the place where science and pseudoscience blur into one another, the thing that I did to treat myself that was most effective but outside of the normal antibiotic realm was this thing called the Rife machine that generates these sound frequencies that are supposed to shatter bacteria, but also are supposed to do a lot of other things. When you buy a Rife machine – it’s named for this inventor from the 1940s, who came up with the idea – you get this large book of frequencies that are supposed to treat everything under the sun.

And I can’t tell you that the Rife machine treats everything under the sun, but I do think that it has real physical effects on a wide range of things and in ways that I don’t think … there are these quasi-scientific explanations; I don’t think they’re fully theorized and I’m not going to claim that they are, but just based off personal experience, I’m really sure that there’s something really interesting there that is currently outside of the official theories of how the world works.

And again, not completely outside, you can find papers on the effects of sound frequencies on bacteria in goat meat and the effects of electromagnetism on this and that. There are people studying these things, but they are way outside the realm of what any normal doctor or scientist would think of as constituent parts of reality. And I had literally barely heard of anything like this before I got sick. And now it’s the weirdest thing that I’m quite sure has some reality behind it.

Peter Mommsen: So describe, how does this actually work? You take this machine and you apply it to some part of your body and you dial it up?

Ross Douthat: Basically yes. So there’s a bunch of versions of it. There are versions that people, I was literally talking to someone just the other day, who had a version that you sleep with and it’s touching your body while you sleep and running and generating these frequencies, audio frequencies, radio frequencies. There’s a version I saw the other day, I don’t know if it wasn’t available or I hadn’t heard of it when I was doing this, but it’s like a wristband that you wear and run these things throughout the day.

The version that I have is more ’80s science fiction. Like it’s a box – slightly bulkier, but the size of a really small laptop and you have two metal tubes that you hold in your hands and then you run the box while holding the tubes and you turn on any one of thousands and thousands of frequencies.

The listeners can’t see this but you can, this is one of the tubes. I’m doing this in the attic. So I can show you, it’s actually broken off, but yeah. In my case, you stand by this box holding these tubes one in each hand and you run the frequencies. And I think most people who use it get sort of reactions somewhat delayed after using it, I would get very quick and weird reactions that again were very, very similar indeed, identical to the reactions that I got from taking antibiotics when I was symptomatic. And again, to return to where this conversation began in describing this experience, I am, I think, inherently undercutting the credibility of the more strictly scientific or non-fringe claims that I’m making about Lyme disease, but it’s also true. So there you go.

Peter Mommsen: Well, I found that actually a compelling part of it, because of course if you are desperately ill, you’re willing to try virtually everything. And that’s actually a very reasonable response.

Susannah Black: Well, you wanted to go for the Rife machine. I kind of wanted to get Ross to tell the story about the intercessory prayer.

Ross Douthat: You pray a lot when you’re really sick, I’ve never been very good at prayer in the way that you’re supposed to be good at prayer. But when I got sick, my prayer basically just became this sort of pattern of desperate begging. That was sort of the sum of it. And nothing ever happened when I prayed to the extent that … there were things that sort of had a touch of providence about them, they were things like the story that you can read in the latest issue of Plough which I won’t recount here because you should pick up the magazine, but was not a sort of … Yeah, well, it was sort of a response to a desperate prayer I guess you could say. But it was several years into the illness and I had just gone to confession and … how should I describe this?

The background of all this is that when you have an infection like Lyme disease, and this is also true of some other bacterial infections like syphilis, if you treat it and basically kill off a bunch of bacteria in your body, you get this reaction that is called the Jarisch-Herxheimer reaction, which is named for a couple of nineteenth century German doctors who observed it in their patients where … and it is different for different people. Some people get flu-like symptoms, some people get, sort of hives-like reactions.

And as with everything about these illnesses, it’s not a hundred percent clear why this happens, but it does happen. And this was just a commonplace for me at a certain point. If I took the right antibiotic doses, when I was sick, I got these really strong reactions where I needed to sort of rub my body and move my body, sort of jerk my body around, not involuntary exactly but it was like you feel this sense of relief if you’re sort of rubbing at your shoulder. That kind of thing.

And so that was sort of part of the treatment and it was just an understood thing that if I was taking a new course of antibiotics, I would get these reactions. Anyway, with that backdrop at one point several years into the illness, I went to confession which I also go to less than I should, but I went to confession and I was doing my penance afterward and I realized that I hadn’t asked for intercession or help particularly recently, because I’d been doing somewhat better. And so naturally my prayer life fell away a little bit. And so I asked the Virgin Mary for help.

And I very, very quickly got one of these bizarre Herxheimer-style reactions there in the church and had to crawl over to the stairs leading to the choir loft in order to avoid making a spectacle of myself as I rubbed at all the joints in my muscle groups where I have had symptoms over the years.

And this was sort of the most extreme example, but thereafter for a certain period of time, this would happen and there were various saints, my namesakes and some family connections, various people “in the community,” you might say, who I could ask for help and I would seem to get some kind of physical reaction and sometimes it would be very mild and it would be something where you could say, “Oh, you’re very clearly just sort of imagining it because you expected and then you focus on that part of your body.” And sometimes it would be strong enough that that didn’t seem like an adequate explanation.

And this was not, I say this in the book, but this was not a mystical experience as I understand mystical experiences. It wasn’t a feeling of oneness with the universe, or the veil of reality being torn, it was incredibly physicalized and was just like these physical experiences that I got from taking strong antibiotics. And it didn’t cure me. It felt more like sort of a helpful hand along the path to the extent that it felt like anything. And again if you are inclined to see chronic illness as psychosomatic, then having this kind of account in the story is validation for that view.

But if you’re a Christian or particularly a Catholic Christian with all our saints and angels, it’s a different kind of validation.

Peter Mommsen: Well, not only your saints and angels, Ross.

Ross Douthat: No chauvinism here. I’m just trying to be deferential to differing theologies of intercessory prayer.

Susannah Black: I like the idea of Our Lady Slayer of Bacteria.

Peter Mommsen: Well, thank you, Ross. And thank you for joining us today. And in terms of what your book has accomplished, I know of several people who it encouraged greatly because I think the biggest enemy for many people in this situation is to feel that not only am I suffering, but I’m also crazy. And so it’s a really good book, listeners.

Ross Douthat: And that’s one that’s really, really good to hear in that I think when you write something like this in certain ways, you have to accept that that is the primary benefit of writing something like this. That yes, there may be some skeptics who are convinced by my account and there may be some of my readers who used to think I was a serious person and now think otherwise but either way, the primary beneficiaries are people who are touched by this kind of experience. And I’m glad that I’m yeah … I hope that’s the case. I’m glad that if you know people for whom that’s been the case.

Peter Mommsen: And I was all also thinking in terms of the overall theme of disability and ability, which we deal with in this issue and have several other articles dealing with it, two of them jump out, one of them actually is a story by Victoria Reynolds who we had on a previous episode of this podcast, Mary’s Song, where she speaks of her own experience of asking for the Virgin Mary’s help. She has a lifelong disability and the importance for them of telling what it’s actually like to live in a body that is always suffering and probably always will be suffering in their earthly lives and yet to see life as something precious and actually in an odd way, be all the more thankful for living in this world. So there was great kind of …

Susannah Black: Overlap.

Peter Mommsen: … overlap here between your piece and those.

Susannah Black: Yeah.

Peter Mommsen: Well last time, on a completely different topic, last time we talked on this podcast Ross, we spoke about UFOs and the good people, whether they’re possibly the same and you kind of left us all nervous that merely by …

Susannah Black: Discussing …

Peter Mommsen: … discussing them, we would all be punished in some horrible way. Were there any kinds of retribution extracted on you after that conversation or were we careful enough?

Ross Douthat: Not that I noticed. No. But let’s not tempt fate twice I think.

Peter Mommsen: It could still be coming.

Ross Douthat: That’s right. They think on very long time-horizons in theory.

Peter Mommsen: Thanks so much for joining us Ross, and we’ll see you later.

Ross Douthat: Absolutely. Thanks so much for having me.

Susannah Black: Thanks for listening. Be sure to subscribe on iTunes or your app of choice and rate us as well. Tune in next for a conversation with Notre Dame professor Carter Sneed about his book What It Means to Be Human and with J. D. Flynn, co-founder and editor in chief of the Catholic news site, The Pillar and the father of two children with Down syndrome.