“Days of Awe: The clinical trial drug that might save my husband’s life” is Bess’s latest essay. It’s great!
“Days of Awe: The clinical trial drug that might save my husband’s life”
Category Archives: Essays
Strange trip: Psychedelics and confronting the fear of death
For many people, taking a psychedelic like psilocybin is one of the most revelatory, profound, bizarre, beautiful, notable experiences of their lives. I’m one. It’s hard to enumerate all the things psychedelics have done with me, to me, and for me, but, given that a metastasizing squamous cell carcinoma is likely to end me, reducing my fear of death is a big one—albeit not a virtue I imagined would be germane so early in my life. I thought I’d have many more bike rides, walks with my wife, Bess, cups of coffee, and books to read—but treatment-refractory cancer means that I’ve been hit with the existential slap sooner than most. In another essay I testified about the powerful effects psychedelics have had on me:
Part of being ready to die comes, I think, from psychedelics; I wrote in “How do we evaluate our lives, at the end? What counts, what matters?”: “Bess and psychedelics taught me to love, and the importance of love, and yet too soon now I must give everything back.” There’s a longer, yet-to-be-written essay about how psychedelics cause me to see myself as a tiny instantiation of the vast, interconnected human whole, which will comfortingly go on even when I flicker out.
Michael Pollan’s book How to Change Your Mind is great and also covers a lot of existential territory. I’m looking for a copy to quote from and can’t find it, because I’ve given so many copies away. Pollan describes the way psychedelics are being used palliatively for end-of-life care, which is, strangely where I now find myself. Fortunately, I have a Kindle copy, and now I can authoritatively say that Pollan writes about how “researchers [have] been giving large doses of psilocybin—the active ingredient in magic mushrooms—to terminal cancer patients as a way to help them deal with their ‘existential distress’ at the approach of death.” Moreover, for many people, “psychedelics [help] to escape the prison of self.” I guess I can say that psychedelics prophylactically assuaged my fear of death, the way Zofran might be taken to prevent nausea.
Even before the present circumstances, from psychedelics I learned how not just to know but to deeply feel and internalize that we’re all part of the show for such a short time, and then it’s someone else’s turn, and that is okay. Until science radically expands healthy lives—which will be great, but it’s not clear whether we’re near to or far from that series of breakthroughs—we’re not here for long, and then we yield up the gift, whether willing with grace or unwillingly with fear.
In How To Change Your Mind, Pollan writes that he “interviewed at length more than a dozen people who had gone on guided psychedelic journeys” and found that, like me:
For many of [the people he interviewed about their psychedelic experiences], these were among the two or three most profound experiences of their lives, in several cases changing them in positive and lasting ways. To become more “open”—especially at this age, when the grooves of mental habit have been etched so deep as to seem inescapable—was an appealing prospect. And then there was the possibility, however remote, of having some kind of spiritual epiphany. Many of the people I’d interviewed had started out stone-cold materialists and atheists, no more spiritually developed than I, and yet several had had “mystical experiences” that left them with the unshakable conviction that there was something more to this world than we know—a “beyond” of some kind that transcended the material universe I presume to constitute the whole shebang. I thought often about one of the cancer patients I interviewed, an avowed atheist who had nevertheless found herself “bathed in God’s love.”
During my first psychedelic journey, I epiphanically understood visual art for the first time. Time and space seemed malleable. I saw life as a series of information problems or logic gates, and the stripping away of life’s surface to see what’s underneath helped me not fear the unknown. Logically, I understand that there’s no reason one should cause the other—that stripping the surface should help me not fear the unknown, including death—and yet that is how things unfolded for me. Feelings became more real to me. Like many people, my ego dissolved and allowed me to merge with all of life. Dying ceased being scary.
I emerged from that psychedelic with a great appreciation for love, which, along with progress and continuous improvement, is one of the great binding forces of the universe. But love can’t be indiscriminate: any person should be judicious in who they bind to. So many people don’t seem open to love, or to understand that it is an action verb and a skill that should be cultivated, and so their capacity for love shrivels like an unwatered plant. Maybe they’re not being giving enough, but being too giving and accepting of others, which puts a person at risk of scammers, parasites, and similar problems. Too much defensiveness can be just as problematic as too little.
Although I’m not in my 50s (like most of the Pollan interviewees; I’m also extraordinarily unlikely to ever reach that age), psychedelics dramatically increased my self-perceived openness. I don’t wholly know what I think about life after death or what is beyond material experience, but, regardless of what there is or isn’t, psychedelics unlocked a sense of human and technological sublime—and that sense of the sublime lets me see my own smallness in the world, and yet I also have seen that my contributions to the world are unique (like everybody’s, but that’s okay). The sublime revealed itself using what was already in my mind. Psychedelics seems to access my subconscious too, in ways I don’t expect, and psychedelics helped me see myself as lucky in numerous ways—including lucky to have experienced the psychedelic mind state itself, before the end. That sense of gratitude sustains me now, through the horrors of treatment and the loss of the tongue.
I don’t know whether many of the feelings and senses of revelation that psychedelics facilitate are true. They may not be. It may also be that the “truth” or falseness of the psychedelic mindset is irrelevant, like asking if purple sounds good. Psychedelics seem to temporarily short-circuit the logical mind in order to let the imaginative / feeling mind wholly take over, which can, I’d guess, be scary for some people, at least if they’re not being guided effectively, or if they’re not in a safe “set and setting,” to use the preferred psychedelic lingo. I come out of the psychedelic head space and feel utterly different—but am I, or is the feeling a lie? Does the question matter, or do the answers?
It could be that the psychedelic reinforces what’s already there. For example, I was interested in stoic philosophy and life before I took psychedelics, and the taking of psychedelics may simply have reinforced some of the notions I’d already absorbed from books—being ready to die, if that is one’s fate, seems like a stoic stance (particularly given Seneca’s socially meaningful auto-termination). Perhaps the psychedelics only slightly ratcheted up the underlying tendency.
I’ve spent most of my life being a thinker more than a feeler, but taking psychedelics balanced me out. It let me do both, and to reconcile apparent opposites. When I was young I think I worked to repress my emotions as a survival mechanism in a milieu that, to put it lightly, didn’t reward emotional expression. That isn’t uncommon, I suspect, since many people who experiment with psychedelics or therapy (and ideally both: psychedelics and MDMA appear to be incredible, underutilized therapeutic tools) find themselves better able to be emotionally expressive and better able to accept the love and affection of others. A lot of us are emotionally shriveled, for reasons I don’t want to speculate on here (despite my penchant for dubious speculation), and treatments that can help that are scarce. Therapy and support groups work for some people, but both work better with psychedelics. Once psychedelics make it through the FDA gauntlet, thanks to the work of the Multidisciplinary Association for Psychedelic Studies (MAPS), we’ll look back on non-psychedelic therapy as not terribly effective—it’ll be like comparing shamanism to medicine. Shamanism may be an interesting topic of study, but if there’s actually something wrong with you, you want the medicine.
Bess eavesdropped on some of the above paragraphs and then came up to me and gave me a hug and a squeeze and said: “I don’t want to do the world without you. You stay.” She gave me a hard slap on the ass and told me it’s decided. I hope she’s right. I’m trying hard to stay, however much psychedelics have made me accept death, without being suicidal or wanting to court death. If I had the skillset to work on treatments to radically extend life, I’d work on them, and I encourage others who have those skillsets to keep working. It may be that understanding and defeating aging and cancer are ultimately the same thing. I don’t have the expertise to evaluate those claims, but they seem plausible from the outside.
I read an interview with the movie director Francis Ford Coppola where he says:
I have no fear of death whatsoever. I used to do a little experiment for the fun of it in my elevator here, when I go down to the first floor. I can control the elevator so when I go in, I shut out the lights and I’m in total darkness. I think, when I get to the first floor that I’m going to be dead. As I go down, I think, I had such an interesting life, I got to be a movie director, have a wife and children, had so much fun with them, got to be in the wine business, go through everything, and as I’m lost in all these interesting thoughts, the door opens on the first floor and I’m not dead. I walk out.
Psychedelics are for me like Coppola’s elevator. Many people take a psychedelic and have the experience of dying while in the psychedelic head space, where it doesn’t bother them. During the psychedelic experience, time also seems to halt, and one hour turns into years.
I’m deliberately not describing the content of psychedelic trips: that content usually seems banal to outside observers, and words are notoriously for capturing the feelings generated in the psychedelic state. Hearing about other people’s psychedelic experiences is like hearing about other people’s vacations—rarely satisfying. The people who can make their vacations vivid find work as travel writers. The shaping of experience through the craft of language is hard, and for psychedelics inadequate.
The last two times I’ve taken psychedelics, I’ve set the same intention before starting: to accept death. But the psychedelic experience is unpredictable; sometimes you get what you get, not what you think you need, and the result is strange and peculiar and worth doing. Both trips were generative and beautiful, though if I learned anything about accepting death, it’s that I’ve probably already done it. Life is a strange trip. The thing I can’t accept, and that will likely trouble me until the last moments, is that I don’t want to abandon Bess, and that I am worried she will be lonely, and no psychedelic can stop that fear and pain. Psychedelics may help many things but can’t help all things. Though I’ve been talking to all of our friends and family about supporting Bess after I pass, I know that she’ll be desperately lonely in a way no psychedelic can ameliorate, and I’ll be dead and so unable to do anything to alleviate the existential pain she’ll likely carry with her always.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
Here is Tyler Cowen on why he doesn’t personally use psychedelics. Those reasons seem fine for him but are probably not generally applicable. As Cowen says, there are also probably diminishing returns to psychedelics, which is consistent with most things human do.
Stoic philosophy, finding a meaningful life, and the cancer treatment struggle
An essay in honor of me appearing on Ryan Holiday’s The Daily Stoic podcast.
If Marcus Aurelius got cancer, I like to think he’d be reasonably stoic about it. Since my tongue cancer diagnosis, I’ve found myself reaching for his and other stoic philosophers’ work as a companion to adversity. You’ll see stoic ideas threaded through the essays my wife and I have been writing about my fatal cancer diagnosis: “Every day I’m trying to make a good and generative day, and I remind myself that there are many things I can’t control, but, as both Frankl and the Stoics emphasize, I can control my attitude.”
One way to see the virtues of this attitude is by process of elimination: What’s the alternative? Wallowing in bad days in which I accomplish and achieve nothing important? Getting angry about things I can’t control, and things that will remain the same whether I’m angry about them or not?* Lamenting that which cannot be, and will not be no matter how much I wish it so? Nothing will bring my tongue back. Bemoaning my fate will not avert it (though I’m also not passively accepting fate: as described below, I appear to be in a clinical trial for a novel, promising drug that targets squamous cell carcinoma of the tongue). The likelihood of another decade of life is not literally 0.0, but it’s under one percent and would require a series of near-miracles via clinical trials. Bess and I are pursuing that path; realistically, though we’re doing everything we can do, “everything” will almost certainly not be enough to achieve substantially longer life.
There’s a term for the people who get excessively upset about things beyond their control: children. Or emotionally immature adults (a subject I know too much about). I’m not saying I’m an emotionless robot or that you should be one; when I got the news on July 21 about the fatal recurrence and metastases, Bess and I spent the weekend crying and talking and crying some more. Premature death is bad and efforts to prevent it are good; stoicism is not lying down and accepting whatever happens. During that weekend we felt a lot. During the past two months, we’ve felt a lot—including gratitude that I’ve made it two months, since, on July 21, it wasn’t clear that I would. But there is a time for feeling things and a time for doing things (Aurelius tells us that “you have within you something stronger and more numinous than those agents of emotion which make you a mere puppet on their strings”), and I try to focus on doing the things that need to be done (like writing this essay), because most good days are composed of doing things. As long as I have the health and energy to act, I will act. Bess seems to have figured out how to get a lot of things done while feeling things strongly, which seems like playing on a hard-mode setting, but what she’s doing appears to be nonetheless effective for her. She says she’s always operating in feelings mode—and has described herself as “a large sack of feelings on legs”—which initially baffled me, but now I see is just an integral part of who she is and how she is in the world.
In some obvious ways, life changes because of a fatal diagnosis. Treatment and treatment options become high priorities. Planning for the far future, like 401(k) contributions, are dropped. Many of the micro social jockeying and status awareness (or anxiety) almost disappears. The time horizon shrinks. When we’re young, most interactions that could lead to friendships, business opportunities, etc., assume that there are decades in front of both parties, and that assumption doesn’t hold for me. What I do with the time granted to me has changed. But some things remain the same: whether there are a few months left or six decades left, the goal is still to win the individual day in ways that are still congruent with a full life.
I’m deliberately vague about what a “good day” is, and what “winning” the day looks like, because different people are going to have different definitions. For me, right now, the good days are the ones I get to spend with Bess, and the ones I—or more often both of us—spend writing (we are each other’s ideal readers). The bad days are ones when I let the feeling of obligation guide me, or when I let up on what I’ve called the “moratorium on banalities,” or ones when I give up and don’t try to be generative. Either fortunately or through the direction of will, I’ve had few days when I’ve given up and not tried to be generative. Some days, I’ve been legitimately too tired or sick to act: recovery after the May 25 surgery took a long time. Chemotherapy is brutal and debilitating. A medication called olanzapine inadvertently made me sleep for like 14 hours, and then left me feeling like a zombie for days. But those are the exceptions. Given my proclivities and obsessions and training, the good days most often entail finish an essay, which is what I’m doing now.
The bad days are, for many people, probably more similar to each other than the good days. They’re the days when nothing generative happens. They’re the days when we don’t use space-repetition software to memorize. They’re the days that disappear in the fog of distraction, or a haze of smoke from whatever someone might literally be smoking. Or the days that disappear in other kinds of mental hazes caused by ingestible substances, or doom scrolling, or media consumption. They’re the days you check Facebook or Instagram or email too much, and then watch a little TV, and then it’s back to the social media grind, and then it’s dinner time, and then you’re tired, and then it’s bedtime.
I’m not saying people shouldn’t take breaks or vacations. Both are good and have their place; Marcus Aurelius wrote: “No retreat offers someone more quiet and relaxation than that into his own mind, especially if he can dip into thoughts there which put him at immediate and complete ease.” When Bess reads this part, though, she chimes in: “Clearly Marcus Aurelius didn’t have generalized anxiety disorder. Who are these people whose own minds offer them quiet and relaxation? How did they get these minds? Where can I get one? Can I have one right now?” But I have a very long break in front of me, the eternal break, and so right now I’m not much searching for breaks from writing. For me, writing offers some of Aurelius’s quiet and relaxation in the mind.
Fundamentally, stoicism tells us to control what we can control, and accept that many things are beyond our control. The squamous cell carcinoma is largely beyond my control; with the October 20 surgery and the radiation in December and January, it seemed as defeated as the Gauls by the Romans. I wish I’d investigated the strange and painful patch on my tongue sooner, but I can’t turn back time and so try to thrust that issue from my mind.
I can control aspects of what I do next, but not what everyone else does next. One doctor at a clinical trial center, for example, decided that I’m not eligible for her trial because my cancer hasn’t progressed far enough on chemotherapy, and I needed to “fail” it before I was eligible. That seems like a misreading to me (Bess and I will have a lot more to say on this subject in our essay about clinical trials), but her view is out of my control, and, moreover, we’d gotten traction with another oncologist at another medical center who was and is gung-ho.
When Bess and I have been pursuing clinical trials, we’ve tried to master the process despite knowing that we may master the process and yet not achieve the desired outcomes. Finding the maximally good clinical trial is literally a life and death issue, which is concomitantly stressful. The present likely outcome is death: recurrent and/or metastatic head and neck squamous cell carcinoma (R/M HNSCC) is almost always fatal, and current treatment options are palliative. So the stakes are very high and only part of the process is under our control.
Some new treatments might do substantially better, which is welcomed in a world where a “successful” treatment might help 30% of patients live a few extra months. R/M HNSCC is refractory to treatment, and the version infesting me grows particularly fast and, from the start, has shown “perineural invasion”— it occupies nerves and uses them to spread. My getting into one of the better clinical trials depends on those other people, like oncologists, primary investigators, anonymous drug company reps, or site coordinators.
It’s been challenging to navigate the bureaucracy and system. In a slightly different world, the trial I appear to be in now may have closed or rejected me. The first time Bess and I inquired about the trial I’ll be starting, it was closed to new patients—a seeming defeat. Then, we got word that the trial happened to have new spots open a few days before my appointment to establish care at that hospital. If it was still closed to me, I’d continue to work the issue, but I’d also try to accept with as much equanimity as I can what is and what can’t be changed. Bess has had less success with equanimity, and, while her own struggle with acceptance manifests as her single-mindedly working towards getting me into the right trial, now the question has shifted from the active “will I get into one?” to the passive “will it work, once the drug is infused?” Without as much to do, Bess doesn’t conceal well how much she struggles with accepting my fate, and what that means for her own.
I’m writing this particular sentence Sept. 8; in one critical way, it’s not been a great day: CT scans show some tumor size increases, despite chemotherapy. One hopes that chemo will shrink the tumors. But what am I going to do differently with this news? Nothing. I’m going to keep going, and doing everything I can to facilitate the trial happening, and to spend time with Bess. I’m going to keep trying to string together as many positive days in a row as possible.
I can’t control that I can’t chew, swallow, or speak normally, but I can try to mitigate these deficits as best I can—I can get speech therapy in an attempt to maximize my intelligibility and verbal legibility. I can write down the phonemes that most trouble me and attempt to find alternate ways to vocalize them. I can’t chew, but I can use a Vitamix or other blenders to create slurries that I can swallow and taste. I can practice the swallowing techniques that minimize choking and improve my ability to swallow foods that are more whole than they’d otherwise be.
Few of us are maximizing the things that are within our control, including me. We can and should try to do better. We should try to be more resilient.
Stoicism may be a philosophy, but it came before the science/philosophy split, and before “philosophy” became a byword for ineffective talkers. “Wordcels,” in modern Internet meme parlance. Stoicism is about living and doing, to the greatest possible extent. I was reading the Albert Camus entry in The Stanford Encyclopedia of Philosophy and came across this, about Camus’s The Myth of Sisphyus:
What then is Camus’s reply to his question about whether or not to commit suicide? Full consciousness, avoiding false solutions such as religion, refusing to submit, and carrying on with vitality and intensity: these are Camus’s answers. This is how a life without ultimate meaning can be made worth living.
I’m doing my best to achieve full consciousness and to carry on with vitality and intensity, most notably via writing and love. I can taste coffee again, which helps achieve a life of vitality and intensity. When I was closest to saying no to life and yes to the void, it was because I couldn’t achieve full consciousness or carry on with any vitality or intensity. For me, there is some minimum viable mind-body state that I dipped below in May and June. To get above that minimum again is good.
I was talking my sister, Rachel, and said to her a variant of what you’ve been reading in this essay: “I’m trying to be stoic about it: doing everything I can, while accepting that much is outside my control.”
“You’re doing a hell of a job,” she replied, “I wish I had the mental resilience you exhibit.” (Okay, this was via text, and I’ve added the periods.) She went on: “I told you this when I saw you, but it inspires me.”
“The alternative—falling apart, screaming, crying, I don’t know—what’s the point?” I said. “It just makes what days I have worse. Life goal is to have as many strings of good days as possible. Even if I don’t have a lot of good days, I want still to max out those I get.” (I use periods in texts, which I’m told makes me overly serious, or sarcastic, or otherwise off-putting.)
“It all makes sense, but it’s not common to be rational in a situation like yours. It’s admirable.”
“I don’t even know if it’s rational per se, so much as me trying to live the best life I can, given the circumstances.”
What’s rational? I don’t fully know. Philosophers tie themselves in knots trying to define it; most of us think we know it when we see it, but otherwise go about our days and lives, trying to take small steps towards a much better world.**
Given what seems like the virtues of stoicism, why is it so hard to implement for so many people—myself included? I’m not sure and the question is a genuine one that I don’t have an answer to. There must be something evolutionarily adaptive about the vicissitudes of random emotions, for the non-stoic reactions and the non-stoic life to be so common. Or maybe it’s counter-adaptive, but vestigial. If the Stoics had known about the amygdala, nestled inside the oldest part of our lizard-brain, responsible for our fight or flight response and a great deal of our fear and decision making, could they have given us some practical guidance as to how to overcome that ancient programming in our minds?
I don’t think stoicism is everything. I can think of some apparent downsides:
* Does stoic philosophy discourage totally feeling one’s emotions? I think there can be a trade-off here; there obvious counterargument is that stoics encourage the feeling of one’s emotions, but not being ruled by them. Feel what you feel, but don’t let feelings rule actions. It’s a subtle but important distinction. “What if you feel you should act on your feelings?” is a tricky one, especially when, sometimes, not accepting a situation can lead to actually changing it (as Bess and I are trying to do with the clinical trial).
* Aurelius doesn’t have a sense of science, the scientific method, or progress. It’s unfair to expect him to, because those notions don’t really get kindled until the Renaissance, but the invention of science is one of the greatest human achievements ever. That achievement occurred after the main stoics were writing.
* Letting stoicism become a dogma instead of a set of adaptable ideas and practices. That’s a risk of almost set of ideas, however, whatever their label.
On July 21, when I got news of the new tumors in my neck and lungs, I didn’t know whether I had only weeks to live. Given the speed of recurrence between the end of radiation in January and the hot PET scan in April, and the speed of the second recurrence between the May 25 surgery and the July 21 CT scans, “weeks to live” was plausible. I rapidly prepared Bess, my family, and friends for my possible demise. The presence of tumors in the lungs scared Bess and me.
Chemo had already been scheduled for July 24, and I went through with it; initially, Bess and I had hoped that chemo would sterilize any cancer cells that remained after the May 25 surgery. Instead, chemo morphed into that palliative effort to buy more time. Have we actually bought that time, or has chemo taken our money and run faster than a crypto scammer? I’ll find out in December, when the first set of CT scans after the clinical trial drug has had time to work—or not. So far, chemo hasn’t shrunk most of the tumors, though it’s likely kept them from growing too rapidly.
Marcus Aurelius died at age 58, of what the notes in my copy of Meditations characterizes as a short final illness of “only a week or so—and the exact cause of his death is not known.” Aurelius’s last entry reads:
Mortal man, you have lived as a citizen in this great city. What matter if that life is five or fifty years? The laws of the city apply equally to all. So what is there to fear in your dismissal from the city? There is no tyrant or corrupt judge who dismisses you, but the very same nature that brought you in. It is like the officer who engaged a comic actor dismissing him from the stage. “But I have not played my five acts, only three.” “True, but in life three acts can be a whole play.”
Early death was more common in the ancient world than it is in the contemporary rich world, and Aurelius, given how much time he spent at war, must have been particularly familiar with it. Yet even today, we are all, sooner or later, dismissed from the city. Yet I disagree that it matters not whether one lives as a citizen in the great city that is life for five years or fifty: fifty is generally better. But I am not going to get all five acts and so have to be content with the acts I’ve had.
The life goal is the same whether there are 30 days or 30,000 ahead, though the means may be differ. All of us know, intellectually, that, given the present level of scientific progress, we’re going to die. Given that, are we living the life we should be living? If not, why not?
I wrote that “Stoic philosophy is a companion to adversity.” Life is about handling adversity, which all of us face, in many forms. In that sense, stoicism is a companion to life.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
And you might be interested in me appearing on The Daily Stoic podcast:
Ryan speaks with Jake Seliger about how his cancer diagnosis and having his tongue removed have changed his perspective on life, why he is prioritizing people much more highly than work now, how he is making every single minute count, what he is trying to communicate with his recent outpouring of creativity, accepting death, and more.
I listened to the podcast after I wrote most of this essay, and the podcast starts with Aurelius’s final meditation—a logical place to go, given the topic.
* Anger is almost always a bid for better treatment: used sparingly and appropriately it can work. All of us have seen the long-term results in people who overused anger and consequently become isolated by it. Sometimes business titans can get away with a lot of anger (Jobs, Musk), but most people can’t most of the time. A lot of us are aware of people who were raised by parents with anger problems. Children can’t defend themselves.
** Stolen from the tagline to Marginal Revolution.
Life, swallowing, tasting, and speaking after a total glossectomy (meaning: I have no tongue)
On May 25, I had a massive surgery that made me feel like I should be dead; the surgery left me without a tongue, without some teeth in the bottom of my jaw, and without important nerves in my neck. The surgery left my wife, Bess (we’d married the night of May 24, hours after learning that our surgeon had opened a slot on the 25th), in a panic. I was supposed to lose only half my tongue, but that is not what happened—this is Bess’s description, from her perspective:
The second, “salvage” surgery lasted twelve hours. Around hour ten, I started to wonder if Jake wasn’t ever getting off the table. When Dr. Hinni finally called me in to tell me they were able to remove all the cancer, I was elated. He got what surgeons call “clean margins.” Then Dr. Hinni explained that, because the cancer had grown in the short time between the April scans and May surgery, he’d had to remove Jake’s entire tongue, not just half—and with it, Jake’s ability to speak, to swallow, to taste—and the relief was replaced by horror. I blacked out for a moment. Jake wouldn’t want this. I walked into the hot night air and hyperventilated in the parking lot. We hadn’t even considered the possibility that Jake might lose his entire tongue. I wondered what I would have done if Dr. Hinni had called me with an update and asked me if they should move forward with the removal? I threw up in the parking lot and felt sick relief that they hadn’t.
In a panic, I called the one person I could think of: our speech pathologist, a woman named Jessica Gregor. She reassured me that, if the surgery hadn’t removed Jake’s entire voice box, he’d likely be able to speak after a fashion again. And swallow some liquids. She told me not to give up hope, and that the road would be long, but that not everything I feared and expected would come to pass. The surgical margins were free of disease. The cancer was gone. I needed to focus on that.
I spent the first night in the hospital sitting awake at Jake’s bedside, certain that he’d decide to die after learning the news. He didn’t want to live like this. It seemed entirely possible to me that he would just decide not to.
Going into the surgery, I knew that that Dr. Hinni (the ear, nose, and throat (ENT) surgeon leading the surgery) would do what he considered necessary to remove all cancerous tissue; he is one of the heroes of this saga, both for taking me as a patient in the first place and for squeezing me into his schedule on May 25. I was supposed to be operated on on June 7 or 8, though I doubt I would have made it that long. Even if I survived, how far would the cancer have spread in those two extra weeks?
Preliminary CT scans suggested that the cancer was, at most, a few months old, and those scans showed a tumor at the left base of my tongue, not the right. The approach to a unilateral one-sided mass is a hemiglossectomy—the removal of half the tongue—although Bess and I also knew that the cancer might affect my larynx, which meant a real chance I’d awaken without a voicebox.
My cancer moves unusually quickly: once Dr. Hinni performed a split mandibulotomy and flayed my neck open to assess the cancer, he found that the tumor had rapidly grown, leaving only 20 percent of the tongue tissue unaffected. Unfortunately, that affected 80 percent included both of the major tongue arteries. Without blood supply, tissue can’t live. So Dr. Hinni was forced to removed my entire tongue, or it would have become necrotic, dying and also killing the reconstructive “flap” made out of thigh tissue.
What follows is, as my brother Sam put it, a “devastating and horrific account, made even scarier because it’s real life.” But although the path was and is arduous, there have been real improvements: I can taste, I can swallow slurries, and there are moments of everyday life that pass for normal. I want to tell the truth as best I can, and that is going to include many dark moments. But read to the end: there is some light, and many people helped me along the way.
After she talked to Dr. Hinni and Jessica Gregor, Bess sought guidance online. She didn’t find much, and that’s why I’m writing this essay: to describe what the process of getting through the post-surgical moment is like, and to describe what the new reality is like on the other side. I’m dwelling on the challenges of the surgery and its aftermath to emphasize how hard the surgery is and how long recovery takes; I wasn’t prepared for either. But in seeking others’ experiences online, Bess wanted to know: What’s the range of responses like? What would not having a tongue be like—endurable, or unendurable? Would I yearn to end things, even if I technically survived? She found clinician opinions, but little from the people without tongues, yet It was the patient’s side she wanted to hear most.
No sane person wants their tongue removed, but having it out and not being able to swallow has particularly awful resonances for me: I’ve been into food and cooking since I was a teenager, and “going out to dinner” was the most common form of going out for Bess and me. “Having friends over for dinner” was our most common form of socializing. I chronically experimented with new food and gadgets in the kitchen. What can I make with fish sauce? Is the sous vide machine worth it? Can an air fryer replace the oven for many dishes? Will the capers in cauliflower piccata alienate our guests?
After the surgery, the questions changed. Would I meaningfully survive at all? In that first week after the surgery, I felt I should be dead. What would happen to me? Would any semblance of normal life be achievable? Was Jessica Gregor right, or was she exaggerating the probability of me doing well in order to help Bess cope in the moment? Bess is an ER doctor, and she’s therefore suspicious of comforting medical optimism, having admittedly doled out some excess optimism she didn’t quite believe while eliding the worst of the bad news. Bess knew Jessica wouldn’t lie outright, but, in the course of the squamous cell carcinoma takeover, both of us have heard a lot of optimistic projections that did not turn out. Jessica said I’d speak and swallow, but how much and how well?
In the days following the surgery, the prognosis seemed grim to both Bess and to me. The “flap” that had been installed in my mouth registered in my brain as an alien presence, even though it was constructed from my own tissue (it’s made of tissue taken from the quadricep muscle, fat, skin, and hair—the hair keeps growing even after being relocated to the oral cavity, though I don’t feel the hairs). Imagine feeling like there’s a frog, or wad of fabric, wedged into your mouth all the time; you’d instinctively want to expel it, right?
The flap is made deliberately enormous at first because it loses bulk over time, and the goal is to eventually have a tongue-shaped mass of flesh in the mouth. The flap isn’t innervated, and so it doesn’t move, but the bulk is necessary for future speech and swallowing. In retrospect, the many hours and microvascular surgery required to place the flap is itself based on the expectation that it will help a patient regain function, since the cosmetic effects are minor unless someone is peering inside your mouth.
The flap is made of me, but it’s inert and insensate. But when I woke up from surgery, and in the weeks after, it set off alarm bells of “wrong” inside my brain. In the early days, my feeling-brain wanted it out of my mouth, however much my thinking brain understood its purpose. Flap challenges were on top of many others: I was swollen from the surgery and felt like I should be dead, despite being technically alive. I was a “pain person,” barely surviving on a steady diet of oxycodone and Dilaudid and Oxycodone and Tylenol and antibiotics. My body was riddled with holes and tubes: two drainage tubes from my left leg. Two drainage tubes from one side of my neck. A feeding tube down my nose (it was stitched into my nose). An intravenous (IV) line piercing my skin (it was replaced a few days after the surgery by a peripherally inserted central catheter (PICC) line—and I was awake for the placement). A tracheostomy tube let me breathe, since the post operative swelling would have otherwise cut off my airway above the tube, suffocating me, but the trache was also prone to clogging with mucous (of which I produced more because of the surgical inflammation and thicker because of post-radiation changes).
A catheter emerged from the tip of the penis, which is as horrible a sensation as you might imagine, and the taking out of it worse than it merely being in place. The surgical wounds weren’t exactly holes, but they made me feel less whole and less human. Twenty-seven staples crawled up my left upper leg, holding the skin together from where they removed my flesh to create the flap. Screws in my jaw and stitches in the flap, the lower lip, the chin, and the neck held the skin of my face and neck together.
In the first 48 or 72 hours—I can’t remember now—a nurse had to come in every hour with a “doppler” device, which looked a bit like a metal pen, and put it in my mouth to check the flap’s blood supply. It’s not common, but some postoperative flaps die because the artery feeding them blood doesn’t take. The flap can sometimes be saved surgically, if the problem is detected early enough.
Despite my run of bad luck, the flap maintained its blood supply and the surgeons were also able to drain a subcutaneous saliva collection that threatened the flap. I didn’t think I could go through another surgery. I could barely move, but within a day or two I could get up, with the assistance of a nurse, who would wrap me with a giant belt to make sure I didn’t fall over and die. Walking was a key part of the recovery, and so I needed to walk as much as possible despite the pain, the fatigue, and the general misery. Bess and my dad spent a lot of time in that hospital room. Apart from the flap surviving, the other key success of that period was me being able to walk, and not falling. My internal monologue—the interior mental voice that has accompanied me for as long as I can remember—shut off. I don’t remember precisely when it restarted, but I think it was around the 12th day.
Night might have been the worst: I was dependent on opioids to sleep but simultaneously aware of the cost of opioids. Mental fog is one cost. Constipation is another. To leave the hospital, I needed to be able to conduct normal elimination activities. I’d vaguely heard the term “suppository” before but had never wished to know more, until I had to use one. Each day seemed to bring its own horrors. Eventually, I had to conduct an impromptu “self-disimpaction” of the bowels. Nurses are apparently not supposed to engage in this medical act, so a few days after the surgery I found myself alone in the bathroom at midnight, caught between “going” and “not going,” and unable to close up shop but also unable to eliminate. I worried about the strain rupturing something. Somehow I got through. At the end I panted and sweated like someone who’d barely survived an ultra-marathon. In retrospect, I realize that although tube feedings tend to cause diarrhea in most people, I was not most people and should have been on a more aggressive regimen of stool softeners and laxatives to counteract my sensitivity to the constipating opioids.
Given what the post-operative process was like, I think it understandable why I was down on living. Besides living itself, I wondered: how would I make a living? A life? With the present being so dark, I couldn’t anticipate the future being much better. I didn’t want to disappoint Bess, or my family, or my friends, but I also felt I’d be in the hospital forever. And what would happen when I got out? I would be helpless. The gains that slowly began to accrue, like walking an extra fifty feet, barely registered. Bess cheered me on and walked along side me with an enthusiasm normally reserved for someone on the last mile of the NYC marathon. I couldn’t understand her excitement: I shuffled like a zombie, my left leg weakened from the taking of muscle. Inability to sleep due to snot and mucus meant that I lived in a foggy haze. Any food I ingested came from a horrible Nestlé product called “Nutren® 2.0.” Sample ingredients, taken from the Nestlé Health Science (science?) Nutren® 2.0 website:
WATER, CORN SYRUP, CALCIUM-POTASSIUM, CASEINATE (FROM MILK), MEDIUM-CHAIN TRIGLYCERIDES, (FROM COCONUT AND PALM KERNEL OIL), MALTODEXTRIN, SUGAR, CANOLA OIL, SOY LECITHIN, CORN OIL
I don’t think humans are meant to survive on sugar (not just one kind, but two are listed there), soy, palm kernel oil, and canola oil. I’ve never heard anyone recommend to a convalescing patient that they will get better faster on, exclusively, McDonald’s and ice cream (though you wouldn’t know it from reading hospital menus). But the Nutren® 2.0 edible food-like substance was on hand and probably easier on my stomach than real food. The Nutren® 2.0 first got injected by naso-gastric tube, a sensation that felt like postnasal drip I was expected to eat; maybe six or seven days after the surgery, interventional radiology (IR) punctured a hole through my abdomen and into my stomach to place a peg tube. That was better than the nose tube, except for the process of having it placed.
After 12 days in the hospital, I got released. Dr. Nagle—who’d made the flap—said that I didn’t need to stay and that the flap seemed to have taken. The release should have been sweet, but I feared going home, and I feared doing something wrong. Bess and I had been trained by nurse educators in how to clean the trache tube, how to suction the trache tube, to clean the suction device, how to replace the band holding the trache tube, how to deal with trache-related breathing emergencies, how to use a misting machine to keep the trache tube moist at night, how to watch for infection, how to change the packing dressing in the incision under my chin that helped saliva drain from the mouth, and whatever other essential skills we needed for me to go home. Adding to the complexity, although I was able to keep my vocal chords, the trache provided air below the level of my vocal chords, so I was unable to speak while it was in. Communication had to be done with a text-to-speech app on my phone, the MacOS text-to-speech feature on my computer, frantic hand gestures, or by writing on some type of pad. I had to keep taking antibiotics twice a day. The chin incision packing had to be changed twice a day. Despite Bess’s medical training, she wasn’t used to the chronic care of a trache or PEG tube, so both of us faced a learning curve. There were other medications I needed, now forgotten but then essential. I had a disturbing rash on what nurses euphemistically called my “peri area.” Doing anything wrong could lead to painful fatality, or infection, or other complications.
The first days home, I got numerous phone calls from seemingly everyone employed by the Mayo Clinic, and some from people not, like specialty pharmacies. Bess answered the calls and quickly began to sound annoyed: “Do you realize that Jake had a total glossectomy and can’t speak?” Yes, Mayo was aware. Yes, they had a department largely devoted to removing not just patient’s tongues, but their larynx and vocal chords as well. No, no one at Mayo considered how to handle this situation, despite Mayo’s large ENT patient population.
I got released, yes, but without a good food pump. It turns out that there are two common food pumps: a Kangaroo Joey Pump, which sucks, and I don’t know how it stays on the market apart from, I guess, FDA approval, and a Moog Infinity Pump, which is better, but seemingly wasn’t available at the time I needed it. If Bess and I had been smarter, we would’ve bought an Infinity Pump; instead, we didn’t get one until two weeks after discharge. There’s a long, hellacious story about the struggle to get a reliable food pump I could use, and then something approximating real food (if you have to “eat” via peg tube, Functional Formularies’ Liquid Hope product is what you want, since it’s composed of recognizable ingredients that might offer some nutritional value), but this essay is already too long and the process of getting what I needed proved miserably bureaucratic and difficult. It wasn’t Mayo’s finest hour. Before October of 2022, when a first surgery removed the first SCC tumor, I weighed around 175 pounds, which is slender but not skeletal for a guy who is 6’2″. I exited the hospital in June 2023 after that massive surgery weighing about 144 lbs. Two weeks after struggling to get any calories at all, and struggling with a barrage of appointments, I weighed in the 134 to 137 lbs range—so low that I was flirting with “death by starvation” territory.
On that 12th day after the surgery, I also walked unaided for the first time. I walked as much as I could, every day. I walked slowly, but I walked. I didn’t really notice me getting a little bit stronger day by day, but I’m told by Bess that I did. The darkness stayed with me; without Bess, I think I would have succumbed to it. She told me that, if I made that decision, she would understand, but that she desperately wanted me to stay, and to promise her that I would tell her before taking the path into the final dark. That I am here to write this shows I did not. But I was close. So close. I didn’t feel like I’d ever get better.
After maybe four weeks of being home, I got a “passy-muir valve,” which allows air to exit a trache tube but no air to enter. That was in preparation for me getting the trache tube removed. It also allowed me to breathe through my nose and mouth, bringing air to my vocal chords, which let me speak, after a fashion, again. “Practice speaking” is more accurate than “speaking,” but I began trying. Friends and family were astonished. My larynx hadn’t been totally removed, and my vocal chords were cancer-free, which gave me some opportunity to say some words. A lot of phonemes escaped me, but some comprehensible words escaped me too. A week or two after I got the passy-muir valve, I got a “cap” to put over the trache; I wore it consistently during the day, but coughing attacks made it hard to wear at night. It facilitated somewhat better speech. By mid-July, about seven weeks after leaving the hospital, Dr. Nagle pulled the trache tube out and put a bandage over the site. I’m apparently a fast healer, despite prior radiation (six weeks of adjuvant IMRT radiation to the tongue and bilateral neck to a dose of 60 Gy over 30 fractions, from Dec. 1 2022 to Jan. 13 2023: it, along with the initial surgery, was supposed to be curative), because within a few days the wound had closed.
In late July, Jessica stopped by our apartment, and she coached me into swallowing some ice cream:
Swallowing without a tongue is tricky. Do it wrong and whatever you swallow goes into your lungs, causing coughing and possibly worse. But when someone without a tongue, who hasn’t swallowed for two months, learns how to swallow again, the moment of swallowing includes a sense that something is going into the lungs, even if nothing is.
There’s a trick to swallowing after your tongue has been taken: you have to tilt your head back, initiate the swallow, swallow strongly and deliberately without hesitation, and then do a throat-clearing sound and motion. That throat-clearing sound and motion forces air up and out of the lungs, closing the epiglottis in a move called a “glottal stop,” which effectively closes off the airway and makes the esophagus the only option for food to travel through. If there’s any material thing in the way, like recently swallowed food slurry, then the air will also help that substance be routed into the stomach, not the lungs.
With Jessica lovingly, but firmly, insisting that I get over myself and knock back a shot of melted ice cream like a freshman at their first frat party, I successfully swallowed the ice cream slurry: Van Leeuwen’s honeycomb flavor. We melted it and blended it with some extra milk, to thin it. And, although I was intensely skeptical that this would result in a meaningful sensory experience, I tasted it. I tasted the ice cream. I was shocked. Anatomically, yes, I understood there are taste buds at the back of the throat and esophagus. I just didn’t expect things to taste almost normal.
Since that night I’ve tried lots of things. Anything acidic, like lentil-soup slurry with too much lemon, doesn’t work well yet. Anything salty, same problem. But savory foods work and so do sweet ones. There’s a fun bakery and wine shop in Tempe called Tracy Dempsey Originals that we’ve been going to. Tracy Dempsey makes spectacular ice cream flavors—particularly her cardamom with fig jam. It turns out I can eat things like cookies and brownies if they’re blended with milk or coffee.
Rough, crumbly, and dry things aren’t any good, but anything that can be made into a smooth, pretty consistent slurry, I should be able to eat. Suddenly I’m talking with Bess about stopping by FnB (our favorite restaurant in Arizona, and conveniently down the street from us) to order food and blend it. We tried that too soon—I wasn’t ready yet—but will try again. That is the human struggle: to fail, to learn, and to try again. The universe is vast, cold, and indifferent, and it wants to eat you. But I’d like to eat, too. And being given the chance to do so again, when I thought I would go the rest of my life without flavor, is no small thing.
After that coaching session, Jessica did a “Fluoroscopic Swallow Study,” which essentially means taking an x-ray video of me swallowing, to see where the swallowed substance goes. The study confirmed that I’m not swallowing into my lungs, though, until I practiced swallowing for a month, every time I swallowed, I felt like I might be. The sensation that food is going down the airway, even when it’s not, made me wary of swallowing, but I kept doing it. You may sense a theme in this essay: things sucked, but I kept practicing even the things that sucked hard at the time, and, gradually, over time, things got a little better. If you’re facing a total glossectomy, get a speech-language pathologist (SLP). I don’t know how to evaluate the quality of SLPs, but they’ll make your recovery easier.
Since those first days of swallowing, I’ve managed to tolerate acids and salts better. Spicy is still hard, but even that is seeing some improvement. I over-indulged on sweets and am now building back up to savory foods. When I wrote the paragraphs quoted above, in August, I couldn’t yet deal with even pretty small food particles in blended slurries. Everything had to be blended smooth. Now I can handle some particulate matter, like imperfectly blended broccoli florets, or the rough parts of roasted sweet potatoes. I still have to blend, and I still wind up adding an absurd amount of water, but I can swallow. Despite taking months of intention and practice, I’m doing it. Love is a practice; so is swallowing, and walking, and writing, and many other things worth doing.
Unfortunately, the cancer was not gone forever and definitively returned on July 21, when CT scans showed around eight new, distinct tumors—four in the neck and four in the lungs. Those are almost certainly going to kill me; the slowness of the FDA in approving clinical trials and many other things means that the treatments that might be efficacious against recurrent / metastatic head and neck squamous cell carcinoma (R/M HNSCC) aren’t here.
The HNSCC hasn’t come from anywhere obvious; I have no known family history of cancer. I don’t smoke, drink heavily, or chew tobacco. The tumor was HPV negative. It seems merely unlucky.
I write this three and a half months after the surgery. Progress has been incremental but real. From walking in the hospital after the surgery to swallowing every day once I learned that I can, I’ve managed to slowly—agonizingly slowly—improve. I’ve pulled back slightly from the brink of the void, which I described in “On being ready to die, and yet also now being able to swallow slurries—including ice cream.” The ability to register taste seems to be improving, too. The darkness that clouded the hospital stay is still with me, but lessened somewhat by progress. Life, swallowing, tasting, and speaking are all worse than they were before the total glossectomy; to say otherwise would be both folly and untrue. To deny improvement would also be untrue, though. If you are contemplating the call of the void, you can always make that decision tomorrow, but that decision, made and executed today, cannot ever be unmade.
If you or someone you know have experienced the horror that is a total glossectomy, I don’t and can’t know whether your trajectory will be like mine. Each person is different, and how life will work varies based on age, initial condition when starting the surgical process, and other factors I can’t think of right now. I hope that, soon, personalized vaccines like Moderna’s mRNA-4157 become the standard-of-care for a first-line defense. If the FDA cared more about patients, and less about bad press from letting potentially deleterious treatments through the system, by now something like mRNA-4157 would probably be approved.
In this alternative world, after the first surgery in October 2022, my tumor would have been sent to Moderna for genetic sequencing. Moderna would sequence the tumor and then create a vaccine based on the tumor’s characteristics. The vaccine would’ve shipped to Mayo, and my doctor would have injected it into me three to six weeks after surgery. This strategy will likely dramatically reduce recurrences. One day, I hope for many fewer glossectomies than there are now. I missed that revolution and will probably die because of it. Hardly anyone cares about the patients dying for lack of effective treatments. I guess we’ll soon be dead and buried in the invisible graveyards, and not making noise to politicians.
Without Bess, I doubt I’d exist right now, and you’d not be reading this. For someone older—I don’t know exactly how old—a palliative approach may be better than the surgical one. The recovery would just be too hard. It’s difficult to write that, but life is full of difficulty, brutality, and unfairness. We like to pretend that we can live forever and that medicine can fix us, but, at current levels of science and technology, neither is necessarily true. We’re getting medical advances every day, despite FDA slowness and intransigence. Cancer, however, still maims and kills. I’ve been maimed, and soon I will die, but until then I can still write.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
And if you’re living with the aftermath of a total glossectomy, please leave a comment or send an email, particularly if there’s anything I’ve omitted or forgotten to discuss. I’m really writing this for search engines; Bess turned to them and, as I said above, found too little about what life is like after the total glossectomy, from the perspective of the person without the tongue. Perhaps most people who have total glossectomies don’t live long, or long enough to write about it. I have some extra time and am compelled to write, so I thought I’d speak to my experience, and maybe help others in a similar situation. The path is very hard, but, for many people, there is a meaningful life at the far end.
Turning two lives into one, or, things that worry me about Bess, after I’m gone
I’ve told Bess that, given the current circumstances, my job is easier than hers: all I have to do is die. She has the hard part; she has to live and figure out how to go on. Death’s severing of connections feels particularly acute for the people who are most attached to other people, and especially the person most wired into the person dying. Bess is most wired into me, and she’s also more anxious than me, such that I’ve been comforting her. Maybe this seems odd, for the person dying of cancer to be comforting the one who isn’t, but it works for us.
Last night, while I was sitting on the couch reading Paved Paradise: How Parking Explains the World,* Bess was holding my leg, weeping as a wave of anticipatory grief crested on her in the sudden, unanticipated ways it often seems to, and I observed that I’m facing my end with more equanimity than she is. She enthusiastically agreed, and at least I got her to laugh for a moment and abort the crying (though she’s welcome to cry as much and as often as she needs to).
What had started these tears was a realization that, if Bess has a hard time writing an essay after I’m gone, I won’t be here to help her organize it—a truth that, I keep reminding her, isn’t a good excuse for her not giving me pages now. But it’s not just editing that I won’t be here to do. A bunch of mostly overlapping worries haunt me, because I feel like Bess and I have gone long past “complementary skills” (though we do have those) and into “utter enmeshment that can only be broken with great damage.” In life I try not to damage Bess, and yet in death there’s little choice. I’m trying to find ways to preemptively comfort her and support her now, while I still can, so that she can call upon my love to help her through the coming darkness—but I still can’t choose not to die of cancer.
Over time, some couples grow into each other such that their minds partially merge; I read a spiritual dimension into this, but you don’t have to. “Grow into each other” is doing a lot of work in that sentence: words or phrases like “merging,” “conjoined minds,” “interdependence,” “co-dependence” (though without its usual negative or pathologic connotation), or, my favorite, “connected by an eternal golden braid” work too. Even before Neuralink allows brain-to-computer and eventual brain-to-brain interfaces, Bess and I know each other’s minds without a physical cable running between us, and so I’m worried that the impending loss of me will be like the loss of part of Bess’s brain. For most people, the loss of a spouse or partner is devastating.** For Bess, I fear the loss will be worse than average, and her recovery will be harder.
To be sure, I think recovery will happen for Bess, and that she’ll find love again (as I’ve instructed her to do, for her own sake), but I worry about complicated or prolonged grief. There’s an intellectual dimension of loss, too, because Bess so often thinks by talking to me. Some people think by writing, or walking, or sitting still and concentrating. Bess’s preferred thinking method seems to be chatter. She has friends and family she chatters with, but I’m her primary target. She’s almost physically hurt when I can’t listen to her ideas right then and there, in the moment. So I try to be open to listening as much as possible, though sometimes work or the need to execute my own writing gets in the way. Soon, it’ll be death that gets in the way.
These are some of the things that worry me:
* Writing and editing. I’ve been Bess’s writing coach and editor, particularly as of late. When Bess is writing, I’ve been telling her that, rather than getting in her own way, she can just write what she’s thinking. Whatever she’s thinking, she can write that down. Admittedly I find this statement and advice a little peculiar, because what does she write about if not what she’s thinking? Is she supposed to write what she isn’t thinking? That’d be a neat trick and if she can write what she isn’t thinking, I’d encourage it purely from a novelty perspective. I confirm that she can in fact write what she thinks, and that people will be interested in what she’s writing—or they won’t. No one is interested in everything. No piece of writing appeals to everyone. But Bess’s potential capabilities are enormous, and, if she can get out of her own way enough to execute, she’ll do great. A lot of what I do regarding encouragement is simply encouraging her to get out of her own way. Her process is like the bike-fall meme:
My job is to get her to stop stopping herself by putting that stick between her spokes. Who will do that job when I’m gone? Sasha Chapin is one answer, and he’s not the only editor out there. But the solution when I’m gone probably won’t be sitting on the couch with her or going on walks with her.
* Memory. I seem to remember things more, or better, or at least differently than Bess. Names of people or of places. Things we’ve done. Her memory is partially stored inside me. My memory of her is stored inside me, and by that I mean that I see her as others can’t, because of our long shared history:
But when Jake looks at me, he sees me at 25, showing up to our first date in a grey mini-dress, black boots and red lipstick. He sees me at 29 in a striped bra and panty set in our 35th story Seattle hotel room, pressing me against the cold glass. And he also sees me as I am now. I’m all these ages at once, as he is to me. Love isn’t just blind to ugliness, but to decay. Look at two 80-year-olds gazing at each other like teenagers and you’ll know what I mean. When I lose Jake, I’ll lose someone ever seeing me throughout all my ages again. I’ve said that parts of me will die with him, and I don’t just mean parts of my heart and the parts of my personality that act in relation to his. I mean entire eras of my life, all the views he was privy to, and therefore, much of my youth, goes as well. No one—even if I find love again one day, as Jake has urged me to do—will ever look at me at see me at 32, skinny dipping on a trip to Gunnison nude beach in New Jersey with a group of friends, laughing at how cold the water is under the sun of a hot summer day.
There are trivial things, too. The other night, we were watching the TV show Invasion (which is pretty good so far, and there should be more stories about alien contact, and more stories with hardware programmers as heroes), and there’s a character named Caspar. Almost all of you will probably have no idea what I’m talking about when I say that I joked to Bess that Kaspar Juul should be covering the alien invasion, with help from his sidekick Katrine Fønsmark. Juul and Fønsmark are characters on the Danish TV political show Borgen, which isn’t bad, but sadly the mothership never lands and no massive antenna dishes play major roles in the show. No one does any heroic programming. Still, it’s a show we watched a decade ago, and we’ve had so much time to build up this dense knowledge of each other.
* Ergonomics. Bess has had chronic problems with typing, because her arms hurt her. Looking closely at her, I see that she tends to contort herself like a circus performer or perch like a buzzard when she’s trying to write. She has a sit-stand desk but rarely stands. When she does stand (usually at my urging), she stands like a human flamingo, perched on her left leg with her right leg bent at the knee, which is pointing to the right, with the sole of her foot pressing against her upper inner left thigh. I believe, in yoga, this is called “tree pose.” Paula Tursi, our favorite yoga teacher from New York City, would be proud, but I don’t see how tree pose can possibly be ergonomic. To Bess’s credit, sometimes she switches legs. I encourage something more stable, but who will tell her to stand, and then tell her not to stand like a flamingo, when I’m gone?
Now that she’s been writing a lot, she’s been struggling again. So I helped her get and set up a Kinesis split keyboard. The split keyboard reveals some of her bad typing habits, like never typing with the pinky finger on her left hand. Now she sits with her elbows at a slightly greater than 90 degree angle. She’s got an external monitor. Adding these little things up seems to ameliorate many of her problems. She’s thrilled to be introduced to these tiny changes that seem second-nature to me. She says she’d’ve never discovered them on her own. She would have kept on suffering, like one of her patients too stubborn to see a doctor. I’m concerned about her extensor tendons. No one else will be, she says sadly, inciting more tears.
What other things do I know that Bess will need to know one day, and that I won’t be able to say to her, or help her with?
* Cooking. I do more cooking, even now, and Bess is too prone to forgetting to eat. She’ll not eat all day and then let pasta be dinner. To be sure, Bess can and does cook—she prefers to make elaborate, amazing meals, of the sort I can’t fully appreciate any more because I can’t chew, but she tends to ignore a lot of the day-to-day cooking that I’ve specialized in. She jokes that she brags about my cooking to her colleagues, whenever she hears someone complain about a spouse who doesn’t do their share of the housework.
“I know what you mean,” she’ll say. “Sometimes I get home after a shift and it takes Jake an extra 15 minutes to get dinner on the table.” Then she’ll sigh exaggeratedly. Another way our minds have merged: we both enjoy entertaining ourselves by sometimes inciting very minor agitation in others.
Since losing my tongue and ability to eat solid foods, I’ve evolved into making a lot of Instant Pot slow-cooker meals. The Indian slow-cooker cookbooks I’ve found are very useful.
When I was in the hospital recovering from the massive May 25 surgery, and then, when I first got home and could barely function, Bess later admitted that she barely ate anything because I wasn’t able to eat. Even though she knew I didn’t begrudge her, she didn’t want to eat in front of me, flaunting her ability to do a basic human action that I’d lost. And, besides, she didn’t have an appetite. She seemed to melt right along with me, losing 20 lbs over in a month. Only when I began cooking for her, and to blend my own food in a Vitamix, did she began eating. She said she felt like I was giving her permission to eat in front of me. And with me. I could only eat via tube.
And then there are beans. Bess was never a bean person: she didn’t love the smell or texture of canned beans, and making beans on the stove is too much a hassle and time commitment. She’s prone to forgetting whether gas stoves are on, though the excellent induction stovetop we’re using now reduces that risk. Plus, the induction stove doesn’t produce noxious indoor fumes like archaic gas stoves. On our first date, we were going to a movie, and she nervously confessed that she couldn’t remember if she’d left the stove on. Later, she told me that she struggled between two warring mental states: concern that I’d think she was crazy to think that she thought she was going to burn her apartment down, and concern that she actually might burn her apartment. In the end, lack of renters insurance motivated her confession. We turned around, missed the showing we’d planned, and checked her stove (it was off). But that was okay. Being a little scattered is one of her numerous charms. I’m getting off topic, because this paragraph started off talking about beans, but the point is that she didn’t love beans until I started buying from Rancho Gordo, which specializes in quality and heirloom beans (they also sell an amazing red popping corn); I was so enthusiastic that I signed up for their quarterly bean club. A friend calls me “bean man.” The Instant Pot cooks them fast. And they taste and smell better. Maybe they’re more nutritious, too, and they don’t have whatever chemicals are used to seal a can’s lining.
* Outdoor drying. The other day, Bess washed a new blanket. I suggested she leave it on the deck, since we live in Arizona and leaving wet garments or blankets outside will leave them rapidly dry, especially in the summer. She wanted to use the dryer instead and had to run it through three times, delaying her ability to go to bed. At the end she said she should’ve left it outside.
* Lifting heavy objects or opening jars: This is a standard male-female issue: I’m considerably better and more able to lift heavy objects and open jars, but, instead of asking for help, Bess often struggles and sweats then stares at me with wide-eyed wonderment when I casually pop open the jar. Sometimes I will please her by telling her that she loosened it for me. Mostly, I just like the way she looks at me as if I’ve returned to the cave fire dragging a mastodon behind me and she’s about to show her gratitude when we get under the deerskins.
* Gadget discovery: The Instant Pot, induction stovetop, and Kinesis keyboard have already been mentioned. I’d be remiss to miss the Zojirushi rice cooker, though. Perfect rice or lentils, every time, with no effort. One and a half cups water to one cup brown rice. One a quarter cups water to one cup green or black caviar lentils. It’s great. She’d have missed the sit-stand desk revolution if I hadn’t nudged her towards a sit-stand desk—which she doesn’t use in standing mode as much as she ought to, but I bet that will change.
* Sleeping at night. Bess is a bad sleeper and she sleeps better when she’s next to me. Five or six years ago, I discovered that reading to her in bed helps her fall asleep. I read her the entirety of The Deptford Trilogy and The Lord of the Rings, as well as multiple Elmore Leonard books (Get Shorty is the best one) and Lonesome Dove. I did all the voices, too, which sometimes made her laugh too hard to sleep. I can’t read Bess to sleep effectively anymore, but she says that being beside me helps her sleep. Even if she seems wide awake and busy near bedtime, if I say I’m going to bed, she’ll hop up and be under the covers, awaiting a cuddle before I’ve managed to get my shirt off. She likes sleeping next to me so much so that she resists sleeping in the office bed, despite me making more noise snoring than I ought to. She insists that Bose Sleep Buds completely solve this problem.***
* Love and affection. Bess thrives on both and I yield them up to her. Sometimes, if I want to let her feel like she’s had a little struggle, I let her think she’s forced me to yield them up, which gives her a sense of accomplishment.
* Geography. Thanks to the advent of universal GPS—a tremendous scientific and engineering triumph that almost no one steps back to appreciate today—geography sense isn’t as important as it once was, but Bess’s sense of direction is peculiar, and one might say close to altogether absent. Even with the phone speaking directions, she’s prone to missing turns or not knowing where to walk. I once asked her if she likes not having anybody else in the car because she’s just come to absolute peace with getting lost all the time. She didn’t even hesitate when she said yes. She calls me her GPS. She will never know which way is north.
* Medical questions. She’s done four years of med school and three years of residency and a decade of being an emergency medicine attending physician, but she’ll often ask me medical questions. Should she use the liquid bandage? Does this thing look serious to me? Do you think (insert symptom here) means I’m getting sick? My medical education consists of listening to her do questions for medical exams, listening to her stories and our friends’ stories, and sneaking into some drug rep dinners by pretending to be a doctor (the one about TPA, a stroke medication, is particularly vivid because Bess claims I raised my hand at the wrong time). She’s performed a thoracotomy—a rare, Hail-Mary procedure in which the doctor cuts open a person’s chest and attempts to use their hands to beat the heart:
With a fifteen blade, I slice deeply from his nipple all the way down to the bed. I grab the scissors, cut through his intercostal muscles, take the rib-spreaders, put them between his ribs, and crack his chest open. There’s a huge gush of blood. And then a moment of stillness, like the second after a lightning strike. Even his blood smells metallic, like ozone. I reach into his chest and put my hands around his still heart and begin pumping it for him, feeling for damage.
Then I slip my fingers down the length of his aorta and it is so riddled with holes that the frayed pieces disintegrate in my hands.
She treats pneumothoraxes and the obstructive shock they cause, also by cutting through the patient’s chest wall to puncture the patient’s pleural space to insert a chest tube. With all that medical experience, she has not internalized that I don’t know if she’s getting sick. I never know. I tell her that and she still wants my opinion. Despite her wealth of medical knowledge and my paucity of it, I’m still her second opinion about many medical issues.
* Book judgment. Bess has shaken off most of her bad MFA interests and habits, but she’s still prone to buying books that have no plot, or are political statements rather than novels, or otherwise aren’t any fun. Bad books affect her writing negatively; good books, positively. I’ve told her that, the next time a book from the McSweeney’s book-of-the-month club arrives, she’s to chuck it and read the first Elmore Leonard novel she can get her hands on.
* General comfort. Bess has said: “The only person who can comfort me over everything happening around your cancer is the person it’s happening to.” Right now, I can (and do) comfort Bess. She nods her head when I ask her if she feels that I’m doing a good job. After I’m gone, friends and family will try to comfort her. I’ve told her as much, and she replies that they won’t be me, and that the only person who can comfort her then will be a person who is gone. I hope that the many ways I’m showing her love now, and trying to prepare her now, will be enough. I’ve been making videos for her, so that when she needs my comfort, she can pull those videos up on her phone, and have a sense memory of me holding her and petting her head while I tell her it will be okay. It will be okay. If there turns out to be any way of reaching her, she knows I’ll do it. She has said she’ll look for me in dreams, since she’s a lucid dreamer.
* Eye masks, dishwashers, and ear plugs: This group is unashamedly a grab bag; Bess didn’t use eye masks for sleep until she saw me using them. Eye masks turn any room into a dark room. Dishwashers reduce the time wasted on dishes, but Bess’s parents apparently don’t believe in efficiency and so they’d never used one, and neither did Bess until she saw me using one. Ear plugs make noisy bars and restaurants tolerable. All three are quality-of-life improvements.
Some of these are minor and merely illustrative, to the point where the reader may be rolling his eyes; suggesting Bess leave a blanket outdoors isn’t on par with editing her work or functioning as her memory. Small actions add up. Small inconveniences and annoyances can become large problems, such as the wrong keyboard turning into a tendonitis and turning into her not being able to write or work. Fun fact: the most important part of a doctor’s life and career hasn’t, for years, been patient care—it’s actually keeping the electronic medical records (EMR) up to date. Kill a couple patients? Frowned upon, but also, eh, it happens. Screw up the computerized record keeping that allows hospitals to bill insurance? That’s a crisis and fireable offense. I exaggerate only slightly.
Not everything I show Bess takes. She wisely eschewed the Vibram Five Fingers (“toe shoes”) when I went through a period of misplaced enthusiasm. She did show me how to pick up a pen from the ground with my toes, a trick I could execute in those shoes, to the horror of students. She likes to travel and wisely ignored my arguments for travel being overrated. There are probably others that I can’t think of right now, but the overall trend is for us to show and share things to one another and for those things to be incorporated into and enhance our lives. When I’m gone that process will break down, and, with it, I worry that Bess will live a worse life, not just from loneliness but from not continually being exposed to the process of discovery that I automatically undertake.
The physical stuff matters, sure—the keyboards or the induction stove—but the loss of processing power and future growth are worse. She helps me grow and I help her. My own growth trajectory is going to be shut off by death, but hers will, I hope, continue. Without me, I worry that growth trajectory will be truncated.
This essay is nominally about Bess, but it’s really about how to have and grow a relationship. How to have and grow a life. No, come to think of it, not one life—two.
* What? Even while dying, I’m allowed to have some intellectual and policy-wonk inclinations.
** There are obviously exceptions, like the people planning to divorce anyway, or the people who stay together out of convenience or habit or lethargy or any number of other sad, if common and practical reasons.
*** Bess says that the keys to saving a (sleeping) relationship in the bedroom takes two things: Separate blankets and some kind of quality personalized white-noise-maker.
Are you taking care of yourself?
This essay is by my wife, Bess.
“Are you taking care of yourself?” Francesca asks. It’s a fair question: my husband, Jake, is dying of a metastasizing squamous cell carcinoma. I say I don’t know whether I’m taking care of myself, and Francesca asks if I’ve gotten enough “me time.”
I think Francesca means: Am I sleeping? Eating? Bathing? I sniff an armpit, and peek down at my waistline. I’m down to 116 pounds, a weight I haven’t seen since senior year of high school, but my hair isn’t harboring small critters and I smell nice, like Dr. Bronner’s peppermint body wash.
I’ve heard the questions about taking care of myself before, but when well-meaning friends ask if I’m taking some time for myself—an analogue of asking if I’m taking care of myself—I laugh. My big concern is that I’m about to get way too much time to myself.
“I bet you look killer in a swimsuit,” Francesca says, to make me smile, not because she means it. She’s Italian, so what she really means is that if she weren’t 2,500 miles away, she’d force feed me pasta until I felt the full force of her calories and affection (which are the same). Only a select few people have asked “Are you taking care of yourself?” and meant it. Some know that my new figure is secondary to the stress and starvation diet I’d accidentally adopted when Jake’s tongue was surgically removed due to a recurrence of that squamous cell carcinoma, and they still say I look good from having lost weight.
Like it’s a consolation prize.
I defend myself to Francesca, saying, “Listen, not a single tooth has fallen out in the last three months, and it appears that I still have most – but realistically, not all – of my hair. Which has a white patch now.”
She makes a clucking sort of tut-tut sound, like I’m a simple child, and asks, “How can you take care of him if you don’t take care of yourself?”
Easily. I like spending time with him. I worry that, soon, he’ll either be killed by cancer or suffer so much that he justifiably chooses to exit. So many people have equated self-care with me taking some time away from the apartment, the hospital, the appointments—time away from Jake—that I get the impression a surprisingly large number of people don’t much like their spouses or long-term significant others. Being away from him, especially right now, isn’t a relief, it’s punitive. Francesca and I chat some more and she admonishes me to make sure that someone takes care of the “caregiver.” And then Francesca goes back to her life and I go back to reading, researching, trying to find some magical combination of medications or the perfect clinical trial that might save Jake. I want to fix. I want to find the right thing to do.
And, I believe, so do the people asking me the dreaded self-care questions. They are nice people who care about me. They want to figure out the right thing to do and to say. They also want to fix it. A clinical trial might help, but barring that, the best most of us can do is sit with the situation and be present. Sometimes, most of the time, there is no right thing to say. And that’s fine. Some situations suck and there are no words to make them not suck and there is nothing people can do to make them not suck. American culture infuses us with the desire to help and fix and suggest (things I’ve done too), but some situations can’t be helped or fixed or suggested away, and the hardest thing to do is to sit in discomfort with the truth.
On a recent evening walk with one of our closest friends, the day before that friend left to go home to New York, Jake said to him, “I’m sorry if I’m not very good at saying goodbye, but it’s my first time dying, I’m learning as I go.” It’s my first time doing this, too. At first I’m not sure what to say to friends who want to know if I’m taking care of myself.
Lately, I’ve been thinking a lot about what “care” means. When (numerous) hospital people call, they usually ask if I’m Jake’s “caregiver.” This translates, I guess, into wanting to know if I’m the person who makes sure he doesn’t pass out when he gets up to go to the bathroom after chemo, grinds his meds for his peg tube, and worries about keeping the areas around various post-op wires and tubes clean. They confirm that they can call my number to schedule appointments, review test results, and schedule delivery of medical supplies.
They’ve never asked me if I am the person who takes his hand in the dark while he’s sleeping and whispers to him that we’re connected forever by an eternal golden braid. He doesn’t have a tongue any more, having had a “total glossectomy”—which is medical terminology for “cut out the whole tongue”—meaning he can’t chew at all, or swallow normally. They never ask if I’m the person who burst into tears with joy when he learned to swallow again, a little bit, and managed to get down a pureed cookie a few days ago; he actually tasted the cookie with just the tastebuds left on his hard palate and esophagus. They’ve certainly never asked if I am the person who tells him that not only is he loved, but who gives him a solid grope and reminds him that he’s still very, very sexy.
You can hire “caregivers” online. It’s a job description consisting mostly of a hospital’s definition. I don’t think—though I could be wrong—that they provide a few of the services I render, but not the best ones, not the loving ones.
If caregiving is officially about physical and administrative upkeep—what do people think I, a person who doesn’t pass out when she goes to the bathroom, can swallow pills, and has no tubes to clean—need to do to care of myself?
What secret things do I need to whisper to myself in the dead of night to keep from falling apart?
Because that’s really what the question about taking care of myself is: What am I doing to make sure that I make it through this experience in one piece? For him, and for myself.
If the internet and well-meaning friends are to be believed, the well from which I give is running dry, but I’ll have more energy after a massage, a glass of wine with a girlfriend, a dinner out, a few hours a week in the gym to get some endorphins going, and a therapist. A therapist who’ll charge me $250 and hour to tell me I should sleep, get a massage, a glass of wine with a girlfriend, and exercise to get some endorphins going.
“No, you’re wrong, the therapist will help you figure out what it is you need,” one of my other well-meaning friends says. Well, what I need is for Jake to not die. And that is probably outside of the therapist’s scope of practice. But because I love this well-meaning friend, I say, “I’ll think about it.”
I think I find the question of “self-care” so absurd because no amount of meditation or yoga can or will change the fundamental truth: watching the person you love die means accepting that parts of you die with them. You can’t save them. You can’t save yourself. I will never be the same. I suspect accepting that truth is the most caring thing I can do for myself.
The night before Jake went into the hospital to have a massive surgery to remove his cancerous tongue (a surgery that involved splitting his lip and jaw in two, flaying his face and neck open, and replacing his tongue with a “flap” of tissue from his thigh), we got married. He was having debilitating headaches and I wasn’t convinced he was going to make it through the night, or through surgery; I’ve never been so relieved to see another human being as I was when I saw his swollen, anesthetic-addled face in the post-anesthesia care unit (PACU). Alive.
All I wanted to do was sit sentinel in the hospital to make sure he stayed that way. Not just as a physician (though being one certainly helps), but as his new wife.
For the first few nights in the hospital, a nurse came every hour to check the flaps’ blood supply. Nurses responded to call lights. Nurses made sure he had his meds. You couldn’t have asked for more attentive care, or a better nurse-to-patient ratio—especially with today’s hospital staffing. The point is, despite the platinum-level care, I couldn’t relax unless I was in the room—watching, waiting to see if he needed anything, and quickly.
For the two weeks after his total glossectomy, the nurses would tell me I should go home to get some sleep. His Ear Nose and Throat doctor, Michael Hinni, who is probably the most considerate surgeon I’ve ever met, told me that I wasn’t allowed to stay in the hospital 24/7, because I needed to get some rest. I needed take care of myself. There were those words again.
And yet, I inflated my Exped MegaMat camping pad and wedged it across the reclining chair the hospital provides for family to sleep on.* There, during the day, I could make sure Jake knew he had company. I could monitor meds and orders, I could talk to the doctors, I could double-check what was happening—even though the doctors and nurses were already keeping track of everything. At night, I could press a button to call the nurses if he had a mucous plug in his the tracheostomy tube (“trache”) and felt like he was suffocating. If I could only rest when I knew he was within reach, I wasn’t going to get any sleep at home. How could I, when I’d be wondering: what was happening at the hospital? Was Jake okay? What if he wasn’t? How does anyone think that the simple act of being physically distant from the situation makes the mental load better, not worse? Being there was taking care of myself.
Of course, the one night I was convinced to go home and sleep, Jake almost passed out alone in the bathroom, while he was attempting a stool “self-disimpaction,” due to constipation caused by the opiates he needed for pain control. The nurses apparently wouldn’t help with that, and didn’t stay in the bathroom with him; although it sounds like the butt of jokes, for someone just after surgery, self-disimpaction is a dangerous act. Knowing I could have helped was the end to further nights in my own bed. We want so badly to have control, and, while I didn’t think I could stop bad things from happening, I wanted to be there to stop them from being worse. It was for me as much as for him. Really, it was more for me.
I’m an ER doctor. ER docs are routinely expected to care for patients when they themselves are in labor. Or have appendicitis. Or have a fever of 102. Or are emotionally distraught from worrying that their husband is going to die. As long as you show up to take care of others, that’s all that counts in emergency rooms. Some colleagues asked how Jake was doing, and if I was okay—often in the kind of tone that assumed I’d respond in the affirmative. Because that’s an implied part of the job: being okay, even when you’re not.
I spent over a decade being expected to separate my personal needs from my ability to address the needs of others. That never appeared in employee handbooks but it was everywhere, a cultural miasma that seemed bizarrely opposed to what medicine is supposed to be about. I wasn’t used to the type of concern I was getting once I crossed the threshold from doctor to patient’s spouse upstairs. It was strange. Didn’t you just do what you had to do, and then push through the moment when you thought you couldn’t? Didn’t you dissociate? Isn’t that how you survive?
Near the end of the hospital stay, Jake and I watched videos describing how to take care of the various new medical devices Jake would need to breathe and to eat and to take pills. There was a video for caring for the trache. Another video for how to care for the peg tube, the peg tube being the tube that connects the outside with the inside of his stomach. For the rest of his life, he’ll ingest most calories through the peg tube. There was even a video describing how to carefully crush a pill using the plastic crusher (spoiler alert: twist to the right and don’t use your teeth, both of which also apply to beer bottles).
Jake survived the surgery and the hospital recovery, and I survived too. I’m writing this in August 2023, and we’re both at home, but the cancer has returned: at least four locally recurrent tumors in his neck, and possibly two metastases in his lungs. I don’t know how long Jake has, and part of the answer depends on finding a good clinical trial. Trying to find one of the better clinical trials is my self-care right now; almost no one survives long with what Jake has. Recurrent head and neck squamous cell carcinoma (HNSCC) kills. Chemo may give him more time, measured in months, but it isn’t curative. Nothing we have is. Barring a miracle that seems increasingly out of reach, he’s going to die.
So I find myself missing those simple, clearly digestible videos about trache care and peg tube cleaning and pill cutting. I wonder, where’s the video that tells you how to find the clinical trial that will put your terminal husband into magical remission? Where’s the video that tells you how hard it is to hold your husband’s hand when he says goodbye to his closest friends, one after another, for the last time? How do you to plan to have a baby he’ll probably never meet? How do you deal with the tears when you talk about cremation, because it’s relatively eco friendly, and getting a plaque on a park bench in New York City, so people have somewhere to go when they want to be with him? Why isn’t there a primer on how to say goodbye to him yourself?
The truth is, right now caring for Jake is mostly a matter of the heart and of logistics. In the month after surgery, and during the first week of his first round of chemotherapy, a lot of my attention was spent monitoring physical practicalities. Then, he improved. Before the cancer circus started, Jake was an energetic person—in the gym, riding bikes, taking long walks, extolling the virtues of the standing desk, working, learning, doing. For a dying man, he’s still surprisingly lively, and very much himself. The other day, for example, he moved a bike that had been living in our common room into his office, and when I asked what had happened to the bike, he innocently asked: “What bike?” And he continued to obstinately pretend not to have known about the bike in our apartment until I finally thought to check the office. He looked extremely entertained. This is normal Jake behavior, and I was equal parts infuriated and relieved by it. I should’ve known better by now and checked the office right away.
He makes me dinner in the Instant Pot, most often using the slow cooker setting. After peg tube feeds, we go on walks. We still have moments when we talk about ideas and books, and where we read together. We’re a book club hiding in a marriage. I cry a lot—I am what I am—and mostly, I spend the bulk of my day on the Sisyphean task of searching for clinical trials.
It’s good to have a project. Without something to focus on, I’m like one of those domesticated African Grey parrots who pluck their own feathers out for want of something to do. I try to do as many of these things within reaching distance of Jake. Even better if I can have a hand or an entire limb draped over him.
We are trying to carry things out the way we always have—together. Jake says he’ll make me dinner until he can’t. Both of us fear that the moment he can’t is coming, soon. I puree him pastries and call about clinical trials. I cannot feel more loved than when Jake hands me a bowl of lentil soup, and the act of eating becomes a comfort to me. I’ll be 117 pounds in no time. And, hopefully, he feels something similar when I get his name added to another trial waitlist and oversee appointment scheduling. Finding ways to take care of him is taking care of myself. And vice-versa. Being asked if we’re taking care of ourselves, is, in itself, a form of being cared for by others, from afar. I’ll try to hear less of the actual question and more the intent: We’re worried about you both. We hope you’re doing as well as you can, day-by-day, until the darkness takes him.
So now, when I’m asked: Are you taking care of yourself? I’ll answer, honestly, “no.” This isn’t the time for self-care; I have decades of that in front of me. We’re caring for each other.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
*If you’re never slept on one of these chairs, know that they’re terrible, and they’re also ubiquitous. Eventually in your life, you you’ll probably sleep on one, for tragic reasons similar to mine, and, when you do, realize that the one un-padded area is the one where you hip will land if you try to sleep on your side. But the camping pad, along with a blanket wedged underneath the parts that dip, turn those chairs into a passable sleeping surface. Try to remember this information, because the most important thing is that this sleeping surface will be five feet from the person you love most.
The death of literary culture
At The Complete Review, Michael Orthofer writes of John Updike that
Dead authors do tend to fade fast these days — sometimes to be resurrected after a decent interval has passed, sometimes not –, which would seem to me to explain a lot. As to ‘the American literary mainstream’, I have far too little familiarity with it; indeed, I’d be hard pressed to guess what/who qualifies as that.
Orthofer is responding to a critical essay that says: “Much of American literature is now written in the spurious confessional style of an Alcoholics Anonymous meeting. Readers value authenticity over coherence; they don’t value conventional beauty at all.” I’m never really sure what “authenticity” and its cousin “relatability” mean, and I have an unfortunate suspicion that both reference some lack of imagination in the speaker; still, regarding the former, I find The Authenticity Hoax: How We Get Lost Finding Ourselves persuasive.
But I think Orthofer and the article are subtly pointing towards another idea: literary culture itself is mostly dead. I lived through its final throes—perhaps like someone who, living through the 1950s, saw the end of religious Christianity as a dominant culture, since it was essentially gone by the 1970s—though many claimed its legacy for years after the real thing had passed. What killed literary culture? The Internet is the most obvious, salient answer, and in particular the dominance of social media, which is in effect its own genre—and, frequently, its own genre of fiction. Almost everyone will admit that their own social media profiles attempt to showcase a version of their best or ideal selves, and, thinking of just about everyone I know well, or even slightly well, the gap between who they really are and what they are really doing, and what appears on their social media, is so wide as to qualify as fiction. Determining the “real” self is probably impossible, but determining the fake selves is easier, and the fake is everywhere. Read much social media as fiction and performance and it will make more sense.
Everyone knows this, but admitting it is rarer. Think of all the social media photos of a person ostensibly alone—admiring the beach, reading, sunbathing, whatever—but the photographer is somewhere. A simple example, maybe, but also one without the political baggage of many other possible examples.
Much of what passes for social media discourse makes little or no sense, until one considers that most assertions are assertions of identity, not of factual or true statements, and many social media users are constructing a quasi-fictional universe not unlike the ones novels used to create. “QAnon” might be one easy modern example, albeit one that will probably go stale soon, if it’s not already stale; others will take its place. Many of these fictions are the work of group authors. Numerous assertions around gender and identity might be a left-wing-valenced version of the phenomenon, for readers who want balance, however spurious balance might be. Today, we’ve in some ways moved back to a world like that of the early novel and the early novelists, when “fact” and “fiction” were much more disputed, interwoven territories, and many novels claimed to be “true stories” on their cover pages. The average person has poor epistemic hygiene for most topics not directly tied to income and employment, but the average person has a very keen sense of tribe, belonging, and identity—so views that may be epistemically dubious nonetheless succeed if they promote belonging (consider also The Elephant in the Brain by Robin Hanson and Kevin Simler for a more thorough elaboration on these ideas). Before social media, did most people really belong, or did they silently suffer through the feeling of not belonging? Or was something else at play? I don’t know.
In literary culture terms, the academic and journalistic establishment that once formed the skeletal structure upholding literary culture has collapsed, while journalists and academics have become modern clerics, devoted more to spreading ideology than exploring the human condition, or to art, or to aesthetics. Academia has become more devoted to telling people what to think, than helping people learn how to think, and students are responding to that shift. Experiments like the Sokal Affair and its successors show as much. The cult of “peer review” and “research” fits poorly in the humanities, but they’ve been grafted on, and the graft is poor.
Strangely, many of the essays lamenting the fall of the humanities ignore the changes in the content of the humanities, in both schools and universities. The number of English majors in the U.S. has dropped by about 50% from 2000 to 2021:
History and most of other humanities majors obviously show similar declines. Meanwhile, the number of jobs in journalism has approximately halved since the year 2000; academic jobs in the humanities cratered in 2009, from an already low starting point, and have never recovered; even jobs teaching in high school humanities subjects have a much more ideological, rather than humanistic, cast than they did ten years ago. What’s taken the place of reading, if anything? Instagram, Snapchat, TikTok, and, above all, Twitter.
Twitter, in particular, seems to promote negative feedback and fear loops, in ways that media and other institutions haven’t yet figured out how to resist. The jobs that supported the thinkers, critics, starting-out novelists, and others, aren’t there. Whatever might have replaced them, like Twitter, isn’t equivalent. The Internet doesn’t just push most “content” (songs, books, and so forth) towards zero—it also changes what people do, including the people who used to make up what I’m calling literary culture or book culture. The costs of housing also makes teaching a non-viable job for a primary earner in many big cities and suburbs.
What power and vibrancy remains in book culture has shifted towards nonfiction—either narrative nonfiction, like Michael Lewis, or data-driven nonfiction, with too many examples to cite. It still sells (sales aren’t a perfect representation of artistic merit or cultural vibrancy, but they’re not nothing, either). Dead authors go fast today not solely or primarily because of their work, but because the literary culture is going away fast, if it’s not already gone. When John Updike was in his prime, millions of people read him (or they at last bought Couples and could spit out some light book chat about it on command). The number of writers working today who the educated public, broadly conceived of, might know about is small: maybe Elena Ferrante, Michel Houllebecq, Sally Rooney, and perhaps a few others (none of those three are American, I note). I can’t even think of a figure like Elmore Leonard: someone writing linguistically interesting, highly plotted material. Bulk genre writers are still out there, but none who I’m aware of who have any literary ambition.
See some evidence for the decline of literary cultures in the decline of book advances; the Authors Guild, for example, claims that “writing-related earnings by American authors [… fell] to historic lows to a median of $6,080 in 2017, down 42 percent from 2009.” The kinds of freelancing that used to exist has largely disappeared too, or become economically untenable. In If You Absolutely Must by Freddie deBoer, he warns would-be writers that “Book advances have collapsed.” Money isn’t everything but the collapse of already-shaking foundations of book writing is notable, and quantifiable. Publishers appear to survive and profit primarily off very long copyright terms; their “backlist” keeps the lights on. Publishers seem, like journalists and academics, to have become modern-day clerics, at least for the time being, as I noted above.
Consider a more vibrant universe for literary culture, as mentioned in passing here:
From 1960 to 1973, book sales climbed 70 percent, but between 1973 and 1979 they added less than another six percent, and declined in 1980. Meanwhile, global media conglomerates had consolidated the industry. What had been small publishers typically owned by the founders or their heirs were now subsidiaries of CBS, Gulf + Western (later Paramount), MCA, RCA, or Time, Inc. The new owners demanded growth, implementing novel management techniques. Editors had once been the uncontested suzerains of title acquisition. In the 1970s they watched their power wane.
A world in which book sales (and advances) are growing is very different from one of decline. It’s reasonable to respond that writing has rarely been a path to fame or fortune, but it’s also reasonable to note that, even against the literary world of 10 or 20 years ago, the current one is less remunerative and less culturally central. Writers find the path to making any substantial money from their writing harder, and more treacherous. Normal people lament that they can’t get around to finishing a book; they rarely lament that they can’t get around to scrolling Instagram (that’s a descriptive observation of change).
At Scholar’s Stage, Tanner Greer traces the decline of the big book and the big author:
the last poet whose opinion anybody cared about was probably Allen Ginsberg. The last novelist to make waves outside of literary circles was probably Tom Wolfe—and he made his name through nonfiction writing (something similar could be for several of other prominent essayists turned novelists of his generation, like James Baldwin and Joan Didion). Harold Bloom was the last literary critic known outside of his own field; Allan Bloom, the last with the power to cause national controversy. Lin-Manuel Miranda is the lone playwright to achieve celebrity in several decades.
I’d be a bit broader than Greer: someone like Gillian Flynn writing Gone Girl seemed to have some cultural impact, but even books like Gone Girl seem to have stopped appearing. The cultural discussion rarely if ever revolves around books any more. Publishing and the larger culture have stopped producing Stephen Kings. Publishers, oddly to my mind, no longer even seem to want to try producing popular books, preferring instead to pursue insular ideological projects. The most vital energy in writing has been routed to Substack.
I caught the tail end of a humane and human-focused literary culture that’s largely been succeeded by a political and moral-focused culture that I hesitate to call literary, even though it’s taken over what remains of those literary-type institutions. This change has also coincided with a lessening of interest in those institutions: very few people want to be clerics and scolds—many fewer than wonder about the human condition, though the ones who do want to be clerics and scolds form the intolerant minority in many institutions. Shifting from the one to the other seems like a net loss to me, but also a net loss that I’m personally unable to arrest or alter. If I had to pick a date range for this death, it’d probably be 2009 – 2015: the Great Recession eliminates many of the institutional jobs and professions that once existed, along with any plausible path into them for all but the luckiest, and by 2015 social media and scold culture had taken over. Culture is define but easy to feel as you exist within and around it. By 2010, Facebook had become truly mainstream, and everyone’s uncle and grandma weren’t just on the Internet for email and search engines, but for other people and their opinions.
Maybe mainstream literary culture has been replaced by some number of smaller micro-cultures, but those microcultures don’t add up to what used to be a macroculture.
In this essay, I write:
I’ve been annoying friends and acquaintances by asking, “How many books did you read in the last year?” Usually this is greeted with some suspicion or surprise. Why am I being ambushed? Then there are qualifications: “I’ve been really busy,” “It’s hard to find time to read,” “I used to read a lot.” I say I’m not judging them—this is true, I will emphasize—and am looking for an integer answer. Most often it’s something like one or two, followed by declamations of highbrow plans to Read More In the Future. A good and noble sentiment, like starting that diet. Then I ask, “How many of the people you know read more than a book or two a year?” Usually there’s some thinking, and rattling off of one or two names, followed by silence, as the person thinks through the people they know. “So, out of the few hundred people you might know well enough to know, Jack and Mary are the two people you know who read somewhat regularly?” They nod. “And that is why the publishing industry works poorly,” I say. In the before-times, anyone interested in a world greater than what’s available around them and on network TV had to read, most often books, which isn’t true any more and, barring some kind of catastrophe, probably won’t be true again.
Reading back over this I realize it has the tone and quality of a complaint, but it’s meant as a description, and complaining about cultural changes is about as effective as shaking one’s fist at the sky: I’m trying to look at what’s happening, not whine about it. Publishers go woke and see the sales of fiction fall and respond by doubling down, but I’m not in the publishing business and the intra-business signaling that goes on there. One could argue changes noted are for the better. Whining about aggregate behavior and choices has rarely, if ever, changed it. I don’t think literary culture will ever return, any more Latin, epic poetry, classical music, opera, or any number of other once-vital cultural products and systems will.
In some ways, we’re moving backwards, towards a cultural fictional universe with less clearly demarcated lines between “fact” and “fiction” (I remember being surprised, when I started teaching, by undergrads who didn’t know a novel or short stories are fiction, or who called nonfiction works “novels”). Every day, each of us is helping whatever comes next, become. The intertwined forces of technology and culture move primarily in a single direction. The desire for story will remain but the manifestation of that desire aren’t static. Articles like “Leisure reading in the U.S. is at an all-time low” appear routinely. It’s hard to have literary culture among a population that doesn’t read.
See also:
* What happened with Deconstruction? And why is there so much bad writing in academia?
Have journalists and academics become modern-day clerics?
This guy was wrongly and somewhat insanely accused of sexual impropriety by two neo-puritans; stories about individual injustice can be interesting, but this one seems like an embodiment of a larger trend, and, although the story is long and some of the author’s assumptions are dubious, I think there’s a different, conceivably better, takeaway than the one implied: don’t go into academia (at least the humanities) or journalism. Both fields are fiercely, insanely combative for very small amounts of money; because the money is so bad, many people get or stay in them for non-monetary ideological reasons, almost the way priests, pastors, or other religious figures used to choose low incomes and high purpose (or “purpose” if we’re feeling cynical). Not only that, but clerics often know the answer to the question before the question has even been asked, and they don’t need free inquiry because the answers are already available—attributes that are very bad, yet seem to be increasingly common, in journalism and academia.
Obviously journalism and academia have never been great fields for getting rich, but the business model for both has fallen apart in the last 20 years. The people willing to tolerate the low pay and awful conditions must have other motives (a few are independently wealthy) to go into them. I’m not arguing that other motives have never existed, but today you’d have to be absurdly committed to those other motives. That there are new secular religions is not an observation original to me, but once I heard that idea a lot of other strange-seeming things about modern culture clicked into place. Low pay, low status, and low prestige occupations must do something for the people who go into them.
Once an individual enters the highly mimetic and extremely ideological space, he becomes a good target for destruction—and makes a good scapegoat for anyone who is not getting the money or recognition they think they deserve. Or for anyone who is simply angry or feels ill-used. The people who are robust or anti-fragile stay out of this space.
Meanwhile, less ideological and much wealthier professions may not have been, or be, immune from the cultural psychosis in a few media and academic fields, but they’re much less susceptible to mimetic contagions and ripping-downs. The people in them have greater incomes and resources. They have a greater sense of doing something in the world that is not primarily intellectual, and thus probably not primarily mimetic and ideological.
There’s a personal dimension to these observations, because I was attracted to both journalism and academia, but the former has shed at least half its jobs over the last two decades and the latter became untenable post-2008. I’ve enough interaction with both fields to get the cultural tenor of them, and smart people largely choose more lucrative and less crazy industries. Like many people attracted to journalism, I read books like All the President’s Men in high school and wanted to model Woodward and Bernstein. But almost no reporters today are like Woodward and Bernstein. They’re more likely to be writing Buzzfeed clickbait, and nothing generates more clicks than outrage. Smart people interested in journalism can do a minimal amount of research and realize that the field is oversubscribed and should be avoided.
When I hear students say they’re majoring in journalism, I look at them cockeyed, regardless of gender; there’s fierce competition coupled with few rewards. The journalism industry has evolved to take advantage of youthful idealism, much like fashion, publishing, film, and a few other industries. Perhaps that is why these industries attract so many writers to insider satires: the gap between idealistic expectation and cynical reality is very wide.
Even if thousands of people read this and follow its advice, thousands more persons will keep attempting to claw their way into journalism or academia. It is an unwise move. We have people like David Graeber buying into the innuendo and career attack culture. Smart people look at this and do something else, something where a random smear is less likely to cost an entire career.
We’re in the midst of a new-puritan revival and yet large parts of the media ecosystem are ignoring this idea, often because they’re part of it.
It is grimly funny to have read the first story linked next to a piece that quotes Solzhenitsyn: “To do evil a human being must first of all believe that what he’s doing is good, or else that it’s a well-considered act in conformity with natural law. . . . it is in the nature of a human being to seek a justification for his actions.” Ideology is back, and destruction is easier the construction. Our cultural immune system seems to have failed to figure this out, yet. Short-form social media like Facebook and Twitter arguably encourage black and white thinking, because there’s not enough space to develop nuance. There is enough space, however, to say that the bad guy is right over there, and we should go attack that bad guy for whatever thought crimes or wrongthink they may have committed.
Ideally, academics and journalists come to a given situation or set of facts and don’t know the answer in advance. In an ideal world, they try to figure out what’s true and why. “Ideal” is repeated twice because, historically, departures from the ideal is common, but having ideological neutrality and an investigatory posture is preferable to knowing the answer in advance and judging people based on demographic characteristics and prearranged prejudices, yet those traits seem to have seeped into the academic and journalistic cultures.
Combine this with present-day youth culture that equates feelings with facts and felt harm with real harm, and you get a pretty toxic stew—”toxic” being a favorite word of the new clerics. See further, America’s New Sex Bureaucracy. If you feel it’s wrong, it must be wrong, and probably illegal; if you feel it’s right, it must be right, and therefore desirable. This kind of thinking has generated some backlash, but not enough to save some of the demographic undesirables who wander into the kill zone of journalism or academia. Meanwhile, loneliness seems to be more acute than ever, and we’re stuck wondering why.
On the “manosphere” or “Red Pill”
Someone wrote:
I’m a reader of your blog and enjoy your thoughts on a wide variety of things. I’ve gone in the deep end regarding the Red Pill, I just don’t know what to believe and I’m seriously doubting myself at this moment. I picked up a book called The Rational Male by Rollo Tomassi and while it has good stuff in it, I can’t shake the feeling that it treats women like objects and whores ready to move on to the next guy. My gut tells me that isn’t the case but I could be totally wrong. I guess I’m looking for a deep connection with another woman and in that denial phase with all this information. I was inspired by your articles “Getting good with women and how I’ve done almost everything in my life wrong,” thought you could have some answers. I’m lost and it all seems so insane, if this stuff is true.
First, I wrote about some of the issues with the communities formed by guys who lose or aren’t succeeding with women in “The appeal of ‘pickup’ or ‘game’ or ‘The Redpill’ is a failure of education and socialization” and Confessions of a Pickup Artist Chaser.
Second, men in the communities you’re referencing ends up in them because they’ve failed in sense. I am not the first to observe that the hardest core feminists and hardest core Red Pillers are more alike in tone and stridency than they’re like normal people who are curious.
Some readers and writers are mostly intellectually interested in the matters discussed by the communities. In many domains, it’s a bad idea to take advice without knowing something of the person giving the advice, what their interests are, so and forth. Taking advice from a pseudonymous stranger on the Internet who knows nothing of you and your life, while you know nothing or them or there life, is… unwise. As Gildor says in The Fellowship of the Ring:
” ‘… The choice is yours: to go or wait.’ [Gildor said.]
‘And it is also said,’ answered Frodo, ‘Go not to the Elves for counsel, for they will say both no and yes.’
‘Is it indeed?’ laughed Gildor. ‘Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all courses may run ill. But what would you? You have not told me all concerning yourself; how should I choose better than you? But if you demand advice, I will for friendship’s sake give it.’ “
Gildor’s reluctance is the reluctance of wisdom.
Be wary of taking advice from anonymous strangers on the Internet with no stake in the outcome of the event itself (this includes taking advice from me, though I do at least use my real name). Some things in The Red Pill and the constellation of related sites are interesting and possibly true, but those things are dwarfed by nonsense, so relying on it for life guidance is at best perilous. What’s the incentive for posting there?
Online communities adversely select for pontificators, because doers are doing. I read the Rollo Tomassi book, The Rational Male, and it’s interesting in places. But it’s also badly written, badly edited, and badly laid out (the version I read suffered from all three). There’s a better book lurking in the book I read. Writing a good book, from the level of the individual word to the level of the book as a whole, is hard—which is why few people do it. Writing a good book is poorly remunerated relative to other activities that take similar time and dedication. On the whole, the number of people with the skills and grit necessary to learn to write a good book are better financially served doing other things. Robertson Davies famously said that the only reason to write a novel is because you feel like you must, or go mad, or die. Few writers have that drive. Maybe Tomassi will. Or maybe he’ll remain overly dogmatic.
Avoid dogma.
Finally, the people who really matter are the artists and the movers. Be one or the other or both. Talk to real people in real life. Get off the computer. The people on Reddit and Twitter and whatever succeeds those two have no sense of art or beauty. The really important things aren’t happening there: they’re happening in the actual world. Diversity exists and matters—not in the politically correct sense of the term “diversity,” but the real sense. Ideas do matter, but they matter most in art and science. If you aren’t taking an idea and spinning it into art, or science, or technology, or business, the idea doesn’t matter. How many angels dance on the head of a pin? For centuries theologians cared. No one does today. Choose what matters: there is some truth in the stuff you’re reading, but the whole story is bigger and broader than any of the reducers to celestial mechanics can imagine.
Do millennials have a future in Seattle? Do millennials have a future in any superstar cities?
Over in the Seattle section of Reddit someone asked, “Millennials of Seattle: Do you believe that you have a future in this city?”* My answer started small but grew until it became an essay in and of itself, since “Seattle” is really a stand-in for numerous other cities (like NYC, LA, Denver, and Boston) that combine strong economies with parochial housing policies that cause the high rents that hurt younger and poorer people. Seattle is, like many dense liberal cities, becoming much more of a superstar city of the sort Edward Glaeser defines in The Triumph of the City. It has a densely urbanized core, strong education facilities, and intense research, development, and intellectual industries—along with strict land-use controls that artificially raise the cost of housing.
Innovation, in the sense Peter Thiel describes in Zero to One, plus the ability to sell to global markets leads to extremely high earning potential for some people with highly valuable skills. But, for reasons still somewhat opaque to me and rooted in psychology, politics, and law, (they’re somewhat discussed by Glaeser and by Tyler Cowen in Average is Over), liberal and superficially progressive cities like Seattle also tend to generate the aforementioned intense land-use controls and opposition to development. This strangles housing supply.
The combination of high incomes generated by innovation and selling to global markets, along with viciously limited housing supply, tends to price non-superstars out of the market. Various subsidy schemes generate much more noise than practical assistance for people, and markets are at best exceedingly hard to alter through government fiat. So one gets periodic journalistic accounts of supposed housing price “crises.” By contrast to Seattle, New York, or L.A., Sun Belt cities are growing so fast and so consistently because of real affordable housing. People move to them because housing is cheap. Maybe the quality of life isn’t as high in other ways, but affordability is arguably the biggest component of quality of life. Issues with superstar cities and housing affordability are well-known in the research community but those issues haven’t translated much into voters voting for greater housing supply—probably because existing owners hate anything that they perceive will harm them or their economic self-interests in any way.
Somewhat oddly, too, large parts of the progressive community seem to not believe in or accept supply and demand. Without understanding that basic economic principle it’s difficult to have an intelligent discussion about housing costs. It’s like trying to discuss biology with someone who neither understands nor accepts evolution. In newspaper articles and forum threads, one sees over and over again elementary errors in understanding supply and demand. I used to correct them but now mostly don’t bother because those threads and articles are ruled by feelings rather than knowledge, per Heath’s argument in Enlightenment 2.0, and it’s mentally easier to demonize evil “developers” than it is to understand how supply and demand work.
Ignore the many bogeymen named in the media and focus on market fundamentals. Seattle is increasingly great for economic superstars. Most of them probably aren’t wasting time posting to or reading Reddit. If you are not a superstar Seattle is going to be very difficult to build a future in. This is a generalized problem. As I said earlier, voters don’t understand basic economics, and neither do reporters who should know better. Existing property owners prefer to exclude rivalrous uses. So we get too little supply and increasing demand—across a broad range of cities. Courts have largely permitted economic takings in the form of extreme land-use control.
Seattle is the most salient city for this discussions, but Seattle is also growing because San Francisco’s land-use politics are even worse than Seattle’s. While Seattle has been bad, San Francisco has been (and is) far worse. By some measures San Francisco is now the most expensive place in the country to live. For many Silicon Valley tech workers who drive San Francisco housing prices, moving to Seattle immediately increases real income enormously through the one-two punch of (relatively) lower housing prices and no income tax. Seattle is still a steal relative to San Francisco and still has many of the amenities tech nerds like. So Seattle is catching much of San Francisco’s spillover, for good reason, and in turn places like Houston and Austin are catching much of Seattle’s spillover.
See also this discussion and my discussion of Jane Jacobs and urban land politics. Ignore comments that don’t cite actual research.
Furthermore, as Matt Yglesias points out in The Rent Is Too Damn High: What To Do About It, And Why It Matters More Than You Think, nominally free-market conservatives also tend to oppose development and support extensive land-use controls. But urban cities like Seattle almost always tilt leftward relative to suburbs and rural areas. Why this happens isn’t well understood.
Overall, it’s telling that Seattlites generate a lot of rhetoric around affordable housing and being progressive while simultaneously attacking policies that would actually provide affordable housing and be actually progressive. Some of you may have heard the hot air around Piketty and his book Capital in the 21st Century. But it turns out that, if you properly account for housing and land-use controls, a surprisingly large amount of the supposed disparity between top earners and everyone else goes away. The somewhat dubious obsession that progressives have with wealth concentration is tied up with the other progressive policy of preventing normal housing development!
This is a problem that’s more serious than it looks because parochial land-use controls affect the environment (in the sense of global climate change and resource consumption), as well as the innovation environment (close proximity increases innovation). Let’s talk first about the environment. Sunbelt cities like Phoenix, Houston, Dallas, and Atlanta have minimal mass transit, few mid- and high-rise buildings, and lots and lots of far-flung sub-divisions with cars. This isn’t good for the amount of carbon in the atmosphere, or for the amount of driving that people have to do, but warped land-use controls have given them to us anyway, and the easiest way to get around those land-use controls is to move to the periphery of an urban area and build there. Instead of super energy efficient mid-rises in Seattle, we get fifty tract houses in Dallas.
Then there’s the innovation issue. The more general term for this is “economic geography,” and the striking thing is how industries seem to cluster more in the Internet age. It is not equally easy to start a startup anywhere; they seem to occur in major cities. It isn’t even equally easy to be, say, a rapper: Atlanta produces a way disproportionate number of rappers (See also here). California’s San Fernando Valley appears to be where anyone who does porn professional wants to go. New York still attracts writers, though now they’re exiled to distant parts of the boroughs. My own novels say, “Jake Seliger grew up near Seattle and lives in New York City” (though admittedly I haven’t found much of a literary community here, which is probably my own fault). And so on, for numerous industries, most of them too small to have made a blip on my radar.
These issues interest me both as an intellectual matter and because they play into my work as a grant writer. Many of the ills grant-funded programs are supposed to solve, like poverty and homelessness, are dramatically worsened by persistent, parochial local land-use policies. Few of the superficial progressives in places like Seattle connect land-use policies to larger progressive issues.
So we get large swaths of people priced out of those lucrative job markets altogether, which (most) progressives dislike in theory. Nominal progressives become extreme reactionaries in their own backyards, which ought to tell us something important about them. Still, grant-funded programs that are supposed to boost income and have other positive effects on people’s lives are fighting against the tide . Fighting the tide is at best exceedingly difficult and at worst impossible. I don’t like to think that I’m fighting futile battles or doing futile work, and I consider this post part of the education process.
Few readers have gotten this far, and if you have, congratulations! The essence of the issue is simple supply and demand, but one sees a lot of misunderstanding and misinformation in discussions of it.
In addition, I don’t expect to have much of an impact. Earlier in this essay I mentioned Joseph Heath’s Enlightenment 2.0: Restoring sanity to our politics, our economy, and our lives, and in that book he observes that rationalists tend to get drown out by immediate, emotional responses. In this essay I’m arguing from a position of deliberate reason, while emotional appeals tend to “win” most intuitive arguments.
By the way: In Seattle itself, as of 2015 about two-thirds of Seattle’s land mass is reserved for single-family, detached houses. That’s insane in almost any city, but it’s especially insane in a major global city. Much of Seattle’s affordability problem could be solved or ameliorated by something as simple as legalizing houses with adjoining walls and no setback requirements. The housing that many people would love is literally illegal to build.
Finally, one commonly hears some objections to any sort of change in cities:
* “It’s ugly / out of character for the neighborhood:” As “How Tasteless Suburbs Become Beloved Urban Neighborhoods” explains, it takes about 50 years for design trends to go from “ugly” or “tacky” to “historic.” It’s hard to rebut people saying “that is ugly!” except by saying “no it isn’t!”, but one can see that most new developments are initially seen as undesirable and are eventually seen as normal. “Character” arguments, when made by owners, are usually code for “Protect my property investment.” It’s also not possible to protect the “character” of neighborhoods.
* “Foreigners and their money are buying everything up and making them more expensive:” Actually, real estate is, properly considered, an incredible export:
The key is to let more development happen in the in-demand, centrally located areas where the economic benefits are largest and the ecological costs the smallest, not just “transitional” neighborhoods and the exurban fringe. Take the existing stacks of apartments for rich people and replace them with taller stacks. Then watch the money roll in.
* “Gentrification is unfair:” Oddly, cities began to freeze in earnest, via zoning laws, in the 1970s. One can see this both from the link and from Google’s Ngram viewer, which sees virtually no references to gentrification until the late 70s, and the term really takes off later than that.
If gentrification is unfair—and maybe it is—the only real solution is to build as much housing as people want to consume, which will lower real prices towards the cost of construction. Few contemporary cities pursue this strategy, though. No other strategy will work.
EDIT: See also “How Seattle Killed Micro-Housing: One bad policy at a time, Seattle outlawed a smart, affordable housing option for thousands of its residents.” The city’s devotion to exclusionary housing policies is amazing. It’s not as bad as San Francisco, but compared to Texas it’s quite terrible.
* I’m reading “Millennials” as referring to people under age 30 who have no special status or insider connections. Few will have access to paid-off or rent-controlled housing in superstar cities. They’ll be clawing their way from the bottom without handouts. In cities like New York and San Francisco, a few older people have voted themselves into free stuff in the form of rent control. Most Millennials won’t have that.
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