* “The two kinds of progressives: Moralists vs. pragmatists.” I’m wildly on the pragmatist side: “As Democrats have become more upscale, they. . .have become less interested in forming big tent electoral coalitions to maximize the odds of welfare state expansion and more interested in ideological purity and uncompromising moral stands. Because the uncompromising moral stand is more appealing if you are not personally counting on Medicaid expansion to make a concrete difference in your life.” I also have the old-fashioned view that politics is about solving collective problems rather than personal expression.
The result of this vicious circle of objections, delays and in some cases outright cancellations of large parts of the projects as the costs mount is that both countries — but especially Britain — are suffering from massive under-delivery on transport infrastructure, causing a huge drag on productivity.
It’s 11 p.m. and I’m shaving my dying husband’s head. We’re in the bathroom, lit only by a curlicue of nightlight. I’m wielding a heavy pair of metal clippers in my right hand, like a deranged, crying barber, as tufts of dark brown hair collect on the broad, smooth expanse of Jake’s upper back. He’s kneeling in front of me, watching intently in the mirror, assessing progress, maybe. What’s he thinking about this literal and symbolic loss? I reach down to collect the soft piles of hair at his feet and toss them into a plastic grocery bag we’re using as a trash can. I used to love playing with these curls just behind his ear: a tickling call for his attention.
Then chemo caused his hair to start coming out. The tipping point happened just before bed.
“Now,” Jake had decided, looking at a clump of hair in his fingers, “let’s just do it now.”
I slide the clippers across Jake’s scalp. Separated from his head, his hair goes from the basis of my favorite diminutive— I call him curly-fry— to something inert. Just hair. It’s no longer his, and thus devoid of most sentimentality.
The buzz of the large metal clippers is insistent, making my ears ring. Lifting the clippers is hard; my limbs feel sore and exhausted—a side effect from crying much of the day (much of every day), as if carrying heavy emotion is akin to lifting heavy weights at the gym. My body seems reluctant to perform this task, even though, when Jake asked me to shave his head I said yes: I want to do it for you.
I’m not crying over the loss of his hair, though I know as well as you do that hair loss has become a boringly cliché cancer trope. No, what discomfits me is that, until Jake observed it, I hadn’t noticed his hair falling out. I didn’t see the obvious hair scattered throughout our apartment, as if I was living with a six-foot-tall, literary, shedding dog: hair on the pillows, hair on the blankets, hair on the couch, hair on our clothes—hair even on and in books on the bookshelves. How did hair get in the books? It was everywhere. And I didn’t see it.
What else wasn’t I seeing?
I’m an ER doctor, and, when I was in residency training, learning to become a good doctor meant learning how to see: the way a patient bites their tongue too frequently during a conversation, the way their speech sounds slightly slurred, the vague discoloration on the edge of their tongue. Other organ systems need to be observed, too, of course, but tongues are top of mind, since Jake has Squamous Cell Carcinoma of the tongue. In theory, one key to being a good clinician is being able to observe (although I know a reasonable number of dense physicians). We study how the body works, primarily so we can understand the infinite ways that it can fail, and how to intervene to stop failure and improve health. But knowing what to do with a problem isn’t enough if you can’t identify that there is one in time. “In time” is key: if you can’t work fast, by the moment you realize the problem, the patient will be dead, or debilitated, or have suffered needlessly.
Much of the skill in being an ER doctor simply comes from practice: identifying who’s sick and who’s probably okay to nurse themselves at home is really the risk stratification of patients. Assessing patients is a skill honed from seeing vast numbers of them, and, like all probabilistic measures, I sometimes I go by the probability’s dictates and am later proven wrong. Medicine is humbling like that. Bayesian inference isn’t perfect. I can’t explain all the subconscious calculations that cause me to hear alarm bells when I see a brief, transitory tremor in one patient, but to know that, in another, it’s a sign they’re cold because we keep the ER temperature low, like a comedy club. And sometimes—because this is the nature of being a human being doing a job in a messy, chaotic world—I notice a symptom, and I misunderstand what it means.
Early on, I didn’t notice enough about what turned out to be Jake’s cancer. So I’m left wondering: if I’d asked him to let me examine his tongue, instead of suggesting he not chew so quickly when he bit it for what seemed like the third time in a week, would the outcome be different? Was there a window of opportunity in August 2022, before the tumor invaded local nerves, when his first surgery might have been curative? Not acting sooner and pressing Jake to act sooner is the biggest error of my life. And though I’ve been told repeatedly that I need to focus on being Jake’s wife, not his doctor—as if I could separate the two, as if monitoring his physical changes isn’t a sign of love—there’s no other physician as motivated as I am to observe the minutiae of Jake’s body. For all that I miss, no other doctor will see as much as me.
Some of my observations likely have bought us more time: I pushed for the CT scans that diagnosed his recurrence a month earlier than would have happened otherwise, because Jake developed slightly more pronounced snoring at night and wasn’t gaining weight despite ferociously consuming calories through his peg tube. I caught a tracheostomy infection early because of a change in odor I noticed when I curled up to him and rested my head on his chest. Excessive studying can become pathologic—I can’t start believing that every time I close my eyes something will go unnoticed and therefore go wrong, yet, on the other hand, I also can’t be sure that it won’t. What if slipping the pulse oximeter on Jake’s finger while he sleeps, when his breathing is irregular, allows me to intervene the moment he becomes apneic? It’s possible, and maybe even probable, that my hypervigilance makes no true difference, and that I want to believe I have some agency that I don’t. It’s the paranoia that comes from lack of control—or maybe it’s just good emergency medicine. It’s also who I am: I can’t give up being a doctor, any more than I can give up being a wife.
Until the night of the great shave, I hadn’t thought about what chemo would do to his hair. We were focused tightly on two big chemo questions: will it stabilize his aggressively recurrent squamous cell carcinoma of the tongue long enough to find a clinical trial that might act a life-saving Hail Mary? Or were the tumors growing so quickly that he wouldn’t survive the week? In just a month and change, Jake had gone from clean surgical margins and barely detectable circulating tumor DNA (tumor DNA can circulate in the blood and be monitored via tests like Signatera’s), to four large, new tumors around the tongue flap and in the neck, along with probable metastases in the lungs. That occurred while Jake was on an immunotherapy drug called Keytruda, which, if he’d responded to it, was supposed to be a miracle drug that would save him, as it has saved many others. But he’s not a Keytruda responder. Chemo, for what Jake has, is only palliative. We were playing for time.
For the week after the first, desperate chemo infusion, all I could see were signs that Jake was going to die quickly. I’ve seen a lot of people die in my line of work.* I know how to recognize the harbingers of a final decline: Jake’s mouth rested in a wide “O” shape as he slept. I saw the irregular rise and fall of Jake’s chest, and he was occasionally apneic. I sat in bed with him all day, frequently holding my hand in front of his mouth to make sure he was still breathing. Jake’s heart was erratic and quick, as I held my fingers against his radial pulse and surreptitiously checked his Apple watch. I slid a pulse-oximeter on his finger to check his oxygen blood saturation. I held him and I told him I loved him and—this was entirely unlike him—sometimes he didn’t say anything back. I’d speak and I’d touch him, and he’d not seem to hear me or feel me. It was as if both his body and mind were lost to me in a distant fog. All I could do was sit there and wait to see if he’d emerge.
While this was happening, our friend Fiona was visiting, both to see Jake before the end and to help with any chemo-related emergencies (she’s an oncology nurse and thus uncommonly equipped for such things). Throughout the long days, she’d pop her head into the doorframe of the bedroom and ask: “Are you going to stay in there all day?
“Yes.”
“Are you just watching him breathe?”
Also yes.
“Do you think that watching him breathe means he’ll continue breathing?”
“Oh, absolutely.”
Fiona nodded. My logic seemed reasonable, considering. She’d been sitting where I was just five years ago, when she lost her own husband to a drawn-out illness.
“I did the same thing,” she said.
And I felt understood. Slightly vindicated, even.
It didn’t occur to me that Jake might simply be over-sedated; his response to the medication looked too much like the slide into the void.
Before this moment, Jake might have been a cancer patient, but he’d never looked like a cancer patient to me. That’s a difference between looking at him as a doctor and looking at him as a wife: As his wife, I look at him and I see all the things still going right. I see his body as a conduit for pleasure, joy, connection. The peg tube, the thirty-pound weight loss, even the missing tongue—all clinical signifiers of “cancer patient”—don’t register for me when I see without my clinical eye. When I’m not careful to watch out for new signs and symptoms, I look at him, and without trying to, just see Jake.
Although I wonder what I’m missing when I don’t look at him clinically, I also wonder what I’m missing out on when I do.
In thinking about the ways I look at Jake, I’ve also become acutely aware of the ways he looks at me. And I’ve come to understand that no one will ever see me the way he can, again. Jake and I are both almost forty. That’s hard for a woman. There are a lot of assumptions being made about my body and my relevance that are difficult to ignore. I’ve started noticing some grey in my hair, some slackness around the jawline, and the recent circles under my eyes. Entropy doesn’t care that I eat a mostly plant-based diet, or get mistaken for a 30-year-old with some frequency (or at least, I used to, before Jake’s illness aged us both 500 years). Ultimately, we’re all just victims of physics and biology, until anti-aging science starts producing blockbuster products.
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.
Jake’s Dad brought the point home to me unintentionally when he came to visit Jake in the infusion center during chemotherapy. Jake was sedated from the meds and his Dad sat beside me, talking nervously, and got onto the topic of soul mates: “The closest I got was to my high school girlfriend,” he said. “I don’t know her last name now, or when she got married, or where she lives. I wouldn’t be able to find her. She’s a 75-year-old woman now.” He looked towards the door of the infusion center, as if anticipating her sudden, miraculous arrival. “But if she walked in here right now, I’d recognize her. I’d see her just as she was at 16 at prom, in a white empire dress, blue eye shadow and a bouffant hairdo.”
Jake has said that in the end, I’ll never be able to look back and say I didn’t do everything I could for him. I’ve found ways to keep him alive that are based in clinical treatment, and, more so, I’ve kept him alive by making life seem more appealing than the alternative. Knowing he feels that way is a small, inadequate comfort if I can’t keep him alive as long as he can and should be alive. But it is a comfort. Making sure he has a good haircut doesn’t rank as highly as finding the right clinical trial or ensuring that the right CT scans and medications are ordered. It’s less than blending a cookie with milk or some lentil soup for him to drink (and taste—an ability he’s recently reacquired). But in this moment, making life seem better than death matters. Cancer makes your world small, focusing it down to how you approach even the simplest tasks. Good medicine and love are both in the details.
There’s a pretty Regina Spektor song called “Sampson” going through my head as I finish shaving Jake’s head— the kind of music he accurately labels an “emotional lady song.”
I cut his hair myself one night
With a pair of dull scissors in the yellow light
And he told me that I’d done all right
And kissed me till the morning light
I wish Jake could kiss me for hours, like he used to. But the split mandibulotomy during his total glossectomy spliced through his lower lip, and the nerves with it, leaving his lip mostly insensate. Instead, I hold his hands, I rub his back, I curl up beside him while we sleep, and I will soon run my hands over the soft stubble of his newly-shorn head.
He reaches up and folds over the top half of his ears so I can buzz off the tiny hairs around his hairline, and then we’re done shaving. I feel a sudden rush of giddiness. Jake still looks like himself. He’s lucky not to have a potato-shaped head and beady little eyes. He pulls off bald strikingly. He looks handsome. Of course he does. I love him, so of course he does. He looks handsome to me even when he’s looked cadaverous to others.
It’s disorienting to hold two truths in my mind at the same time: one truth, Jake is sick, terminally so. Seeing his frailty those first few days after chemotherapy, when I was sure he was about to die, was seeing things are they are. But so is the other truth: seeing him as vital, quick-witted, deeply connected to the world of ideas, and, as it turns out, very sexy bald.
I tell him so: “You’re very sexy bald.”
Jake fixes me with one of his dubious looks, that I know so well.
“You are!” I say.
He squints at me, this time with more skepticism.
“That’s my diagnosis,” I say, both doctor and wife.
He accepts this with a smirk and examines his new haircut. When he lets go of his ears, I kiss the tops of them. I kiss the top of his head. I kiss his upper lip, that still has some feeling. Then he tells me that I’ve done all right.
I keep thinking about what happens to my wife, Bess, after I die; there’s a recurrent image in my mind, about what happens to her after I’m gone, that I can’t seem to shake. Bess once started a story this way:
I know what happens after you die. I take your family into a quiet room, with Kleenex, and then I say the word “dead.” Not “expired” (because you are a person, not milk), and not “passed on,” because families always want to believe that just means I transferred you to another hospital. Dead. I have to say it. That’s basically all they taught us about how to deliver bad news in medical school. A one-hour lecture. When you train to become a doctor, they don’t really teach you about death. They tell you how to prevent it, how to fight it, how to say it—but not how to face it.
She’s an ER doctor, so she’s delivered a lot of bad news to a lot of families—her line of work delivers bad news like OB-GYNs deliver babies. She tells families about death, and sometimes coroners, but she doesn’t go home with the family. She doesn’t think deeply about what that dead person’s life meant, because she can’t, and it’s not her job to. She doesn’t go through that person’s things, chucking or donating almost everything that someone used to construct and execute a life. We spend so much time buying, storing, corralling, searching, sorting, and thinking about stuff, and then we perish and what happens?
I mean that in a literal way: I die from that squamous cell carcinoma in my neck and lungs, and then what? What happens to Bess? In the short term there is a lot of crying. Friends and family are, I hope, there to comfort her. Probably I’ve been helped to the other side by hospice, or, alternately, the pain has gotten bad enough that I’ve chosen to end things. I hope, too, that we’ve said everything there is to say between us, because Bess and I have a deal, a rule, an agreement: to leave nothing unsaid. Whatever it is we want to say, we say. This may not be a common way to face death. Bess is in a bunch of doctor-related Facebook groups, including some about relationships and some about terminal illness, she reports that a lot of couples don’t seem to have relationships in which they can say what they most deeply feel and believe. Instead, they seem not to like each other much, or to focus on quotidian aspects of their lives up to the very end. How must that feel to the person left behind?
There must be a sense of unfinished business, of things never unlocked, of it being suddenly and permanently too late to get out whatever a person most truly feels and thinks. A lot of The Presentation of Self in Everyday Life is, justifiably and rightly, about damping and tamping down feelings and one’s deepest convictions, in the pursuit of getting along, paying the bills, advancing science, and so on. Adults can’t run around constantly feeling big feelings, except maybe for the occasional manic artist or lunatic writer. We need to get stuff done. But there are times, like when we’re dying, or marrying, or watching birth, or giving birth, or taking MDMA with someone we love, to step back, feel things, and express what’s there.
To be clear, Bess and I are working hard to delay the moment of death—it looks like Bess has helped find me the optimal clinical trial—but the odds of lasting more than a year, if that, border on “miraculous.” I don’t want to be delusionally optimistic, inanely pretending that things are not as they are. I do want to cultivate the optimism and perspective described by Dan in this story, but I also want to prepare, as best I can, myself and Bess and everyone else around me, for what’s to come. And the speaking about what is to happen is part of that.
I don’t know precisely how the end will come, and oncologists are deliberately quiet and vague about the specifics. They say it’s different for everyone, which is probably just true enough for them to justify to themselves the saying of it, and the evading of the question’s heart. Internet searches have filled that void, although, unless you have specific need to know, I recommend against learning what death by head and neck cancer is like for the person dying.
At some point, the suffering may be too much, and then I hope to exit by my own hand, gracefully, not having been wholly unmanned by disease. “Unmanned:” it’s an old-fashioned word, and one that appears in the appendices of The Lord of the Rings, when it is time for Aragorn to department the world. His wife Arwen pleads with Aragorn “to stay yet for a while” because she “was not yet weary of her days.” Aragorn asks her if she would have him “wait until I wither and fall from my high seat unmanned and witless.” I didn’t imagine that I might face the same question so soon, and yet it’s here, before me, and I hope to depart before the pain robs me of my mind and leaves me witless and suffering. Aragorn says that “I speak no comfort to you, for there is no comfort for such pain within the circles of the world.” And that I fear is true of Bess, too, that there will be no true comfort for her pain. Her parents will help her, our friends will help her, she will not be alone—and yet the pain at the moment of my own departure will remain.
Then what happens? What happens after I depart, whether at home or hospital or some other place? When I’m gone, I don’t see any point of being buried in a random cemetery, but dealing with the corporeal matter is probably the easy part, relative to the emotional stakes. I don’t want to leave Bess bereft of direction: I like the idea of a low-impact set of remains management, and one that symbolizes becoming part of the earth again. Conventional cemeteries probably made sense at a time in history when most people never traveled more than a few miles from where they were born and most families were large and interconnected, but they don’t seem to make much sense to me today. Conventional cemeteries seem like a tremendous waste of space, particularly in cities.
I’ve read that the Japanese have a system in which a person’s grave site is rented, not “owned,” and a person’s remains remain in the site for as long as someone pays a nominal fee—something like $20/year. When no one is left to pay the nominal fee, the site is re-used for whoever is next. Doing this ensures that not too much urbanized land is poorly used. This system seems good to me, but it’s not the American system. I’m fond also of the idea of being put in a mushroom suit and made into mushrooms, but that strategy seems to have gotten a lot of PR and yet isn’t used much.
Out of the plausible and easier outcomes, I like the idea of cremation best: then Bess can turn me into plants and/or mushrooms as she grows them (in Arizona, one has to interact with a funeral business, which is a regulatory scam, but that’s a rant for another time). When she’s got a new plant or mushroom cake, she can put bits of me into the soil. In addition to being cremated and being made one with nature again, I checked, and it’s possible to sponsor a bench in a New York City park for a not-ridiculous amount of money. So I’d like a bench sponsored for me, in Stuyvesant Park on 2nd Avenue and 16th Street. That’s a few minutes from all three apartments we lived in in the city. Whoever is in the neighborhood can come sit with me—or perhaps “on” me. Whoever wants to say hi can bring some coffee and pour a little on the ground for me, and read on a book on the Jake memorial bench. Our friend Josef stopped by to scout the park; his report listed five plausible plaque sites, with the ideal in his estimation being:
1. Outer edge, West Park. I think this is the best spot. Nice view. There’s a free book box nearby to see what people want to share and read. Quiet street behind rather than the main street. Tree behind the bench providing some shade, though it’s less full than many others.
I’m sold.
Cremation and a bench memorial seem more meaningful than conventional options, like a pointless burial in a pointless cemetery in a random place that isn’t home to me. Plus, I’m fundamentally an American, and we make shit up as we go along. Our main tradition is “let’s make up traditions.” Which is what I’m doing.
So Bess now knows what happens to me after I die.
And what happens then? I sound like a child, repeating the “And what happens then?” question, but I think about it. Bess and I have an apartment containing the physical stuff of our lives together. Bess has made it a home, which is good, since I’m too lazy to pick the art on the wall or keep the plants alive or put a cheerful blue rug on the floor. I’d live with a computer and a bed and some folding bookshelves and kitchen gear and not enough other things to make a housing unit a home. Our apartment has been a good enough, verging on outright “good,” place for us to live—the only place we’ve lived since leaving our true home in New York—but it’s not somewhere she’ll want to stay after I’m gone. There’s a transient feeling to our apartment itself and the apartment building we’re living in; no one lives here for long. We’ve probably lived here longer than we should have, but moving is a schlep and Bess has done a lot of work to make our place nice. We’ve got complementary skillsets, which makes her losing me even harder. We’ve planned to move out once we have a kid, but that process has proven more challenging than expected (which is a topic that could get its own essay, and might).
When Aragorn chooses to pass on (if I were a doctor talking to his family, I’d say “die”), Arwen goes forth from his tomb, “and the light of her eyes was quenched,” and she goes out of the city, never to return. Bess will one day leave what is now our home—the place where we lived happily for years—and she’ll go when all the stuff that makes up our lives has been boxed up to be moved or discarded. What will that process be like for her? Painful, I have to think, given how memories will suffuse so many otherwise inanimate objects. I’ve offered to donate the clothes I’m not wearing any more and otherwise tidy up my physical things, but she’s refused. She wants to do it herself.
I’ve also offered to donate some of the unruly number of books I’ve been foolishly carting around, but she’s refused that too, saying she wants to choose which ones to keep—especially the ones I’ve written in, which is most of them. She won’t need the geothermal energy textbook I’ve used when writing proposals, I think, or the books I’ve not gotten to, or the Python programming book I’ve not given the attention it deserves, but I’ll leave them. She’s claimed that she’s “keeping them all,” and that she “wants them all.” This doesn’t seem pragmatic to me, but I won’t be here to vote.
Some books, like my copies of The Lord of the Rings or The Name of the Rose, she’ll obviously want. They’re favorites of mine, and I read both out loud to her—Bess is a nervous, difficult sleeper, and reading to her helps her relax into sleep. For The Lord of the Rings, I gave Pippin an absurdly lisping voice that often made Bess protest that I should “read him normally,” as if her nightly protests weren’t part of the fun. For The Name of the Rose, I spoke all of William of Baskerville lines in my best Scottish accent, poorly but enthusiastically imitating Sean Connery. I’ve put Bess on the accounts she needs to be on and entrusted her with the vital computer passwords. She knows where the pictures are (I shoot most of the photos—there are those complementary skills, again), and she knows the organizational scheme, which is important because organization isn’t among Bess’s strengths. In searching for and researching clinical trials, though, she’s practically been a project manager: when the stakes are highest, she does what needs to be done. She’s helping to delay the day when she’ll walk out of our home for the last time, and into whatever the future will hold for her. I think she’ll live with her parents for a bit, and maybe fly to the East Coast and stay with friends for a few weeks at a time. I think that one day she’ll be ready to love again, and she’s promised to at least be open to the possibility.
As hard as it is to write this essay—I’m crying as I type—I’m sure it’ll be harder to live. Bess tells me that she feels lucky to love me so much. Not everyone gets that. She feels lucky; I feel at least as lucky.
Maybe she will walk through the empty rooms of our home one more time, thinking of all the life we lived in them. Some of our friends—Josef, Martha, others–have promised that she won’t be alone for the task of discarding and packing and moving, and I hope they adhere to that promise.
This is the image that recurs to me: Bess looking around for the last time, Bess shutting the door for the last time, Bess walking down the hall for the last time, Bess walking out of the building for the last time, Bess being alone and me not being able to do anything about it.
* “Brits are less productive because it is too hard to build stuff.” Being able to build things is good, and not being able to is bad. Similarly—both guys are even named Sam!—”Why is Britain poor, especially compared to France?” Answer: a vetocracy even worse than the one that exists in much of the U.S. In the meantime, Finland has substantially ameliorated its homelessness challenges by building a lot of housing. It’s frustrating to watch easily solvable problems, with current and even quite old technologies, go unsolved. In fields like computer science, the easy problems get solved, because of, among other things, the lack of veto points.
* Making mechanical keyboards in China. I’m fond—overly fond, to the point of wasteful pointlessness—of mechanical keyboards, and am now using a Kinesis Advantage keyboard as modded by Upgrade Keyboards. If you’re susceptible to keyboard gear-acquisition syndrome (GAS), don’t visit Upgrade Keyboards.
It’s hard and maybe impossible to have a rich or full life without understanding other people, and, being at the end of my life, I’m thinking about what I missed. “Understanding other people” is one thing I missed, in part because “understanding other people” is really made up of many different skills. But I came to understand that a big part of understanding other people—one that I was bad at for a long time—is noticing them. “Noticing” sounds simple, right? And yet notice how bad a fair number of people are at it. I’m not the first to notice how important noticing is; Noam Dworman, who owns the Comedy Cellar, said:
People pick up on very slight cues in an instinctual level — kind of analogous to pheromones, I guess — that they can’t account for. They don’t know they’re doing it. It probably affects who seems like a likable person, unlikable, who you trust. There’s a million different ways these things present themselves, but it’s real. It’s very real. I would say some people are oblivious to these clues, and they probably suffer for that during their lives.
That resonates with me because I was very bad, for a very long time, at picking up those slight cues on an instinctual level—probably because I come from a family consisting of people who range from “terrible at picking them up” to “apparently unable to, like prosopagnosia for social life.” I’m not sure there’s a great way to describe briefly how to pick up slight cues on an instinctual level—if there were, it wouldn’t be hard—but I learned later than most how to do it. Recognition of a problem helps resolve it, and it took me until I was in my twenties to even recognize the problem, so I was behind in both seeing the problem and in fixing it.
No one is perfect, but as with anything human, some people are better at recognizing instinctual social cues than others. Standup comedians, if Dworman is to be believed, are or become better than most. Combined with other social defects like an inferiority complex and too little time simply being around other people, not picking up cues led me to a lot of unhappiness, and, when I was younger, I couldn’t even diagnose the source of the unhappiness, let alone fix it.
Now I see the errors clearly, and, where I am, it’s also easier to speak to mistakes; maybe it’s easier to recognize those mistakes, too, or the ego drops some of its daily defenses because there’s no long-term internal or external reputation to protect. The existential slap hits and then how much more is there to conceal? What is the point of concealing mistakes and whatever one’s truest feelings may be at this point? You want the people who mean something to know how much they mean, before the end.
In “How do we evaluate our lives, at the end? What counts, what matters?”, I speak implicitly about mistakes when I say that “What really matters, sustainably, over time? Other people, and your relationships with other people.” A lot of us, including me, forget this or never learn it. Narcissism is one way of never learning the lesson about other people. There are others, some pathological but most likely not. Most are everyday misses, from inattention or ignorance or ego or busy-ness or the thousand other things composing everyday life.
Being too open to other people is probably another form of mistake: life is about other people, but there’s got to be a balance. It’s poisonous to give away too much value, but it’s also poisonous to be too miserly and closed off. Being closed off was my fault when younger; it was like I wanted to connect but lacked the interface to do so. It took a long time to build that interface, and not having it earlier on was one of my mistakes. One of the things I found most helpful in building that interface was simple experiment and effort: try, see what works, and if something works do more of it, and if something doesn’t try less. Stated that way it seems obvious, but I didn’t have good models for those basics. There’s a recognizable flow to normal conversation that some people don’t get. They monologue or fade. They never quite get the flow. It took me a long time to get the flow and to better empathize with and model other people.
I think the average person is too closed off, or open in the wrong way, and maybe doesn’t realize it: the closed off are frequently protecting themselves at the cost of vulnerability, and all it takes it a few minutes scrolling on social media to see that having full-access to a person’s every thought and feeling also doesn’t translate into real intimacy. Social media is so often anti-social. And a significant minority of people, like some of my family, either don’t realize that social skills can be taught, learned, and practiced, or realize that but don’t do anything with it. Knowing something but doing nothing in response to it isn’t so different from not knowing it.
My family has trouble with eye contact, even though “Eye contact marks the rise and fall of shared attention in conversation.” And “Eye contact may be a key mechanism for enabling the coordination of shared and independent modes of thought, allowing conversation to both cohere and evolve.” The authors find that “eye contact signals when shared attention is high.” If you don’t make consistent eye contact with someone when you’re facing that person, you’re telling them that you’re not paying attention to them, and they shouldn’t pay attention to you. Some people never learn this and thus never think to teach their kids or younger relatives to make eye contact. And then the lack of eye contact reduces coordination and friendship. Miss one key skill and the tower of social skills comes tumbling down, or is never built in the first place. “When we’re not routinely socializing, we feel that something is amiss.” When we don’t even know how to socialize effectively, because we’ve not been taught it and not observed good examples of it, we also feel that something is amiss. And that’s what I felt for a lot of my life, without being able to understand what I was missing.
Reading is the main thing that helped me undo many early problems and pathologies. I find the people who don’t read somewhat astounding. Some of them have good, socially functional families and so maybe need less book-based modeling, but there is so much to know about the world, and reading is the widest funnel—the widest aperture—we have for taking that in. Until Neuralink is ready, we have the word. This is supposed to be an essay about mistakes, but amidst many life errors, I was also inadvertently doing some things right, and inchoately searching for answers without being able to rightly articulate the questions.
I did a lot of learning via reading (and a lot of escapism via reading), but I don’t think most people learn what they’re missing through books; they learn other ways. Dworman, for example, says that standup comedians are “smarter than most people. They’re still less easy to offend. They’re still much better company. They’re still much better conversations, much less boring small talk.” Very little small talk is fine but why not skip to the big talk? Somewhere I figured that out and have tried to adopt it, and to ask the invasive questions that do a good job of repelling the people I want to repel and attracting the people I want to attract. I want to get out of the exurbs of chat and into the dense core of cities, where the action is.
For that reason, I recently proclaimed a moratorium on banality for any visitors. Now is the time—and there won’t be much more— for me and the people I love to say the things we need to say to each other, while we still can. There isn’t time to discuss the weather, or look at that cute dog photo, or wax poetic on the lack of flavorful tomatoes at the grocery store. Bypassing the warm-up of introductory chit-chat can be uncomfortable, particularly for people not used to expressing whatever they really feel, but goodbyes are inherently uncomfortable. I’ve said to friends that this is my first time dying, so I don’t know exactly what to do. Neither do they. Some have no practice saying anything real or true. But it’s better to wade into uncertainty together, and connect meaningfully, even when it’s hard. Big talk is hard. Worthwhile things often are. To avoid it, means choosing separation over discomfort. Some people want to be on their huge lots separate from everyone else, I guess, but loneliness is a common cost to that, and we’re seeing the rise of the lonely. Maybe we should get out into the world, in all senses, more.
Comedians only like to hang out with comedians, and they die a thousand deaths when they have to go to a dinner with people who are not comedians. They really don’t like it, because they cut out all the nonsense.
That’s what dying tells us, too: cut the nonsense and find the sense that matters. It’s not everything. I’m still doing some things that might be trivial in some sense, like reading. But reading is core to who I am, as an infovore and information processor; not being able to read or think after the major May 25th surgery was debilitating and even humiliating to me. I couldn’t be the person who I am, and who I am supposed to be. The voice in my head shut off. I felt like the proverbial vegetable. The eventual return of the voice in my head made me feel more alive again, even when I couldn’t speak and could barely move. There was a way forward. To me, reading is one of the essences of it, if it’s done well. If I have interesting things to say—things comedians might like to hear—I have them to say because I read a lot.
For much of my life, I didn’t get the instinctual social cues that underpin social life, and it took me a long time to recognize that; but I wonder too, what mistakes am I making now, that I won’t recognize for another 10 – 20 years? Which is to say, ever? What am I not noticing? What am I not noticing that I’m not noticing? Alas, I won’t live long enough to know. That’s one of my burdens, for now, until the burden is unfairly and prematurely taken from me.
For the second time in a two weeks, Jake tells me he’s ready to die. The first time he says it, he’s frustrated: red-faced and retching, trying to hack out a thick glob of the mucus of the sort that’s incessantly collecting in the back of his throat. Jake has squamous cell carcinoma of the tongue, and each new attempt to burn, poison or cut out the cancer has added to a list of losses that aren’t adequately balanced by gaining time on this planet.
The first surgery used a CO2 laser to cut out a cancerous portion of the left side of Jake’s tongue, and as soon as Jake recovered adequately from the surgery he got hit with radiation, which scorched away mucous membranes and skin. Radiation caused dry mouth and thick, ropy secretions—but the surgery and radiation didn’t prevent the cancer from recurring. As bad as the original treatments were, the new surgery entailed a “total glossectomy” and “partial laryngectomy,” which is medical terminology for “his whole tongue and part of his larynx were removed and replaced by a flap of tissue from his thigh.” The new treatments cost Jake the ability to speak and swallow normally, or to feel saliva pooling in the back of his throat and clear it. The thick secretions and abnormal swallow mean he’s constantly battling to expel phlegm, only to have it immediately return. The “goo,” as he calls it, is relentless. He is constantly spitting, hacking and choking.
“It never fucking stops!” he wheezes between attempts to hack that mucus up and out. He gets some out, but it’s obvious that he’s not getting all of it.
The blue, v-shaped vein in his forehead is popping. He’s clutching the edge of the sink, trying to expel a thick glob that I can hear rattling as he tries to speak through it. His fingers are turning white. He attempts a sip of water—a skill he has just recently started to re-learn—which gets caught in the mucous, so he aspirates some in his lungs. He gasps stridulously but no air is moving into his lungs. For thirty terrifying seconds he’s not getting air. The muscles around his ribs retract, straining. I’m an ER doctor, but a Heimlich maneuver for a small amount of water isn’t going to do much. Anyway, in this moment I’m not thinking like an ER doctor, I’m a panicked wife. I need him to breathe again. I need this spasm to pass before he passes out. I’m hopelessly planning out how to get a man nine inches taller than me to the ground safely, when he turns red and gasps. Finally, he spits out a huge lump of goo. It’s quickly followed by another. He strikes the counter with his hand.
“Enough!” he says. “All day, every day. It’s disgusting. I’m disgusting. I try to sleep and there’s goo, I wake up and there’s goo. I spit it out and there’s more goo. I’m ready for this to just be over. The only way it’s ever going to stop is when I finally fucking die.”
I stop reaching towards him and keep my mouth shut. I just squint at him like I’m staring directly into the truth. He’s right. I don’t want him to be right.
How does a person decide how much suffering is too much? I’ve spent nearly every day of my career faced with that question. Each emergency room shift brings patients with their tenth bowel obstruction after their fifth surgery for recurrent colon cancer, patients on their second transplant (with more organs failing) coming in twice a week to have fluid drained from their abdomens, their lungs, from around their hearts. Autoimmune patients and diabetics losing limbs piecemeal. All these people, trying to stay alive in a state of perpetual falling apart. Entropy is so clearly winning. I can see why they’d want to say “enough,” and let go of the gift.
Before we knew for sure that Jake’s cancer had returned, we were walking hand-in-hand around downtown Phoenix after grabbing tacos for dinner (back when we could just grab food, put it in our mouths, chew, and swallow, like it was nothing at all). We knew Jake’s PET scan was abnormal, and that the CT scan was too. But Jake had just completed radiation, which frequently causes inflammation, leading to false-positive early PET scans. There was a good chance the abnormal CT showed destruction of the hyoid bone in his neck—a potential side effect of radiation—which, while not optimal, isn’t a tumor and thus wouldn’t kill him.
We’d met with his ENT surgeon, a Dr. Michael Hinni, earlier in the day, and we’d scheduled a biopsy to settle the “is it cancer?” debate. That night, we had the luxury of speculation. It was Schrodinger’s tumor: both present and not present, with us heavily leaning on the side of “not present” as a comfort. Dr. Hinni had told us that a recurrence meant “salvage surgery”, which would cost Jake half his tongue and part of his larynx, and could leave him unable to eat, swallow or speak. Dr. Hinni and the surgery team would have to replace half of his tongue with a flap of tissue harvested from his thigh. The other option was immunotherapy, which was estimated to have a 30% cure rate—a number which we now know is so overly optimistic as to be laughable.
“If it’s cancer, I’d rather not have surgery and take the 30% chance at a normal life,” Jake says as we walk. I grip his hand as if he were a balloon about to float away. “I know that isn’t what you want to hear.”
I nodded. It wasn’t. But I could be magnanimous. It was still a thought experiment at this point. So I say, “I understand,” because I do. But also because I could still say, “I just hope that isn’t a decision you have to make.”
It was cancer. When faced with the certainty of a diagnosis, Jake moved forward with the surgery. “It’s surgery or death,” he said, and he wanted to have a shot at living. For me, he said. He’d still get the immunotherapy, to increase the odds of a long-term cure. I felt as much relief in his decision as I did fear about what that meant for the rest of the life he might or might not get.
The second, “salvage” surgery occurred on May 25 and 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 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.
It’s amazing what people learn to live with: Paralysis, dialysis, blindness, deafness, pain, the loss of a limb, impotence, incontinence, the loss of a tongue. For some patients, the losses accrue by degrees. I’ll see them dwindling across years of emergency room visits. Their suffering slowly compounds, each gradual change requiring a small adjustment, yet adding up to tremendous deficits. But for others, like Jake, the door to the person they were before shuts so suddenly and so loudly that it shakes the whole foundation of the building. There’s no getting used to the idea of a new life, slowly. There is just a new life. I’m not sure one way is better.
But there’s a lot we think we can’t live with that, once faced with having to live with it, we do. I’m constantly amazed by patients, like Jake, who are incredibly resilient, finding reasons to live in a landscape they expect to be desolate of motivation. Maybe we don’t even need the motivation. Maybe it’s just what we’re programmed to do. Survive.
Still, I try to give Jake something to live for.
The big things: love, affection, and (hopefully) a kid—if he can make it that long and science is on our side. And I try to remind him of the things he loves to do that he has always lived for: writing, thinking, learning. Me.
But there’s also the unexpected gift of rediscovery. Eventually, Jake gets his tracheostomy breathing tube capped, and we can speak to each other. It takes time for me to get used to his new speaking patterns, but I now understand him without great difficulty, although I need to clarify what he’s saying to people who aren’t around him frequently. Incredibly, just a week ago, he swallowed water for the first time, with the support and instruction of Jessica Gregor.
The ability to swallow escalated quickly—what time was there to lose?—and he discovered that when he swallows, he can taste, probably using the taste buds left in his esophagus and on his hard palate. So now I’m blending brownies and cookies and melted ice cream as many times a day as I can, stuffing him with sugar like a foie gras goose, hoping it’ll be pleasurable, but also in the hope that it’s one more thing—and no small thing—to live for. A way to feel reconnected to himself. Victories that distract him from ruminating on the question: how much suffering is too much? How much mucus and hacking and struggles breathing can a man tolerate? How much pain? How many things taken away? Without the victories, I’m scared that the more Jake thinks about the questions, the more he’ll settle on an answer that is: less than the suffering he’s experiencing now.
Just two months after the horrific surgery that was supposed to buy us years together, the cancer has reappeared in four new places along the margins of his tongue flap, neck, floor of the mouth, and larynx. It’s metastasized to the lungs. Suffering, it seems, just begets more suffering. It’s hard to see the person you love suffer. But even when Jake suffers, I’m glad he’s here. Here to lie next to me at night, to edit this essay when I’m done with a draft, here to just exist in the same piece of spacetime. I’m glad he’s here, because he’s still trying so hard to be. But I think I’ll probably also be glad he’s here when he no longer wants to be. I won’t be able to help myself. I want him to stay through the pain, the mucus, the feelings of drowning. And I wonder if that makes me a monster. I’m so greedy for him—for time with him for his body next to mine—that I wonder, if it hasn’t yet, will it turn me into one eventually?
I’ve seen it happen. Finally faced with the actual end, families have begged me for medical violence in the ER. As if only more technology, procedures or sheer force will solve the problem of every human’s inevitable decline. “How Doctors Die” describes the way doctors understand that medical violence at the end of life isn’t a good answer, and that compassion often means declining the last possible bits of care, which resemble torture more than medicine. I’ve felt the ribs of a desiccated 95 year old break under my hands while doing CPR. I’ve seen a heart failure patient’s family refuse comfort care in the hopes that more meds and devices will convince the heart to squeeze harder. I’ve heard the words “do everything,” so much that my relationship to futility has changed.
It would be easy to say that families’ desires for more medicine, more effort, is a product of medical ignorance—too many TV shows convincing people that CPR has more than a 10% survival rate. But that’s not the whole story. I realize now how easy it is to forget that something doesn’t work when you want it to work so badly. Sometimes, we justify these requests by hoping for a miracle. We ask ourselves: can I live with myself if we won’t try everything?
So I have been trying to ask myself: can I live with myself if we do?
I ask our friend Fiona, who was Jake’s charge nurse when he first had cancer in 2005, and who lost her own husband after caring for him through a prolonged illness just five years ago: “What if Jake is going through surgery and chemotherapy and suffering just to stay with me because he knows how badly I don’t want to lose him?”
“What if he is?” she says “If that’s the gift he wants to give you, let him. If he wants to stay for you, he wants to stay. Let him.”
“I’ve told him he doesn’t have to,” I add, hoping for absolution.
“He’ll tell you when he’s had enough.”
The second time Jake tells me he wants to die was just a few hours ago. We’re sitting in the chemo cubby, as I’ve come to call it: the semi-private, three-sided cubicles in the Mayo infusion center, where you can hear the other cancer patients—the coughs, the chatter, the pumps beeping—but not see them until you get up to find a bathroom. We’re walled off by windows on one side, and while it’s bright and a little hot, the light is nice. From here, we can see the 101 freeway, which we agree is admittedly less exciting than watching First Avenue from our folding dining room table back in our old Manhattan apartment. Both of us would love to go back and visit our old life, to walk down 14th Street together, hand in hand. But cancer makes your world small, so much smaller than your old life, and the prospect of a transcontinental flight for a pleasure trip in the face of so much exhaustion feels impossible. The place I most want to be these days, is just wherever Jake is. Even if it’s the hospital. We’re adjusting our expectations.
The nurse comes into the infusion cubicle with the pre-treatment medications. She pushes six different meds, including Ativan and Benadryl, which cause sudden psychomotor slowing. It’s like watching the batteries running down on a wind-up toy. Jake fights the wave of somnolence, and he starts to mutter. He asks the nurse about the coordinate tattoo on her arm. He closes his eyes and says he sees visions, patterns, but can’t clarify more. Are they psychedelic or dream like? Both? He’s not sure. He’s making some sense but is clearly affected by the meds. Suddenly, he opens his eyes, looks out the window, and says, “at least I have a good view from here.”
Then he starts to cry.
We’ve been doing a lot of crying. But the suddenness of it, the way it feels like the reality of the situation is spreading through his veins along with the sedative, breaks my heart. There’s not a moment when we aren’t aware of the sand running so rapidly out of his hourglass, but there are moments when we feel time slipping away more acutely. Did he cry during the first infusion? I think so. I could go back into my journal and look, tell myself that this is a medication reaction and not a sign of worsening despair (of course it is, his, and mine, as I’m crying along with him now), but I’m almost positive it is despair—how could it not be?
Chemo is so brutal, and for squamous cell carcinoma patients it is only “palliative,” in that it may extend his life but won’t extinguish the cancer. He’ll have more time to say goodbye but will trade the suffering from chemo for some months more. I hold Jake’s hand and kiss his face and look at his color in the bright daylight—which is sallow, but brighter than it’s been the last few days. He just stares out the window, glassy-eyed, and weeps. I squeeze my body against his to hold him firmly in the chair beside me. His Dad, who is visiting during the infusion gets up to hold his other hand, which is limp.
“You can give me a squeeze back,” his Dad says, because he needs reassurance, too. I’m not the only one. Jake squeezes. His Dad seems relieved, but not reassured. For a few moments, we both cling to Jake, as if we could grip hard enough to keep him here as long as we need him. When his Dad sits back down, Jake drops my hand and picks up his phone, holding it so only I can see. He can’t really speak any more, but he types:
“I’m ready to die, but not wanting to. Key difference.”
I don’t know if he’ll remember telling me after the Benadryl and Ativan wear off. That this declaration came after being disinhibited from the drugs, though, makes it likely that this is what he really feels. Strangely, it feels like a terrible, heartbreaking reassurance. Not yet, he’s telling me. But one day. Once again, I say nothing, but this time I do reach for him, and I hold him.
I think gently about all the people who have asked me to try futile, frustrating things to try to save the person they love; doctors may “know enough about modern medicine to know its limits,” but most people want to burst past those limits, though they can’t. I think about the way people look at me when I explain that there’s nothing more I can do to help, and anything I do will only to make a bad situation worse. I think about their anger and their fear. And for the first time, I think about the relief they must feel when I, not they, am the one who tells them that enough is enough. No more. They don’t have to be the ones to decide.
It doesn’t make them monsters to want to cling to hope past the point of sense, it just makes them human. It makes me human, too.
I’m both not ready for him to die, and I don’t want him to. But I don’t get to decide, either. All I can do is try to tip the balance in favor of the life he has, until Jake, or his disease, decides that it’s too much. Because the only moment when you can answer the question of how much suffering is enough, is the moment that it stops.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. This essay is part of a series; click here and then scroll down for the others.
Robin Hanson says: “… folks, late in life, almost never write essays, or books, on ‘what I’ve learned about life.’ It would only take a few pages, and would seem to offer great value to others early in their lives. Why the silence?”
Interestingly, or not, I’ve been working on essays and posts along these lines.
* “America’s Top Environmental Groups Have Lost the Plot on Climate Change.” “But as the pace of electrification picks up, new clean energy projects are facing opposition from what seems like an unlikely source: large environmental organizations.” The extent to which environmental groups have achieved the opposite of their stated, intended effects is amazing; their opposition to nuclear power, for example, meant we spent decades relying on coal and then gas.
* Student loans (which is also related to the second point). Not realizing that large parts of the higher ed system are powerful, important, and legitimate, but large parts of it are scams. Schools themselves obfuscate this basic point, which now seems so obvious to me; despite how obvious this is, no one cares enough to fix it. The student-loan system means schools have no skin in the game and incredible incentives to get students in the door, but no incentives to care what happens after they graduate. This is bad.
* There are lots of things that no one cares enough to fix, or that have established interest groups preventing fixes, and sometimes that’s just how the world is. Bullshit often wins, but it’s a mistake to let it win in your life.
* Not being able to connect normally with other humans (a family failure and one that, when young, I couldn’t even identify, let alone rectify). Diagnosis is a critical part of improvement and it took me way too long to diagnose some of those underlying problems. This regret is linked to a lot of other ones.
* Choosing what I rightly perceived to be the easy way with work.
* Short-term priorities over long-term ones.
* What matters long term? Family and people.
* What doesn’t? Stuff you buy. Status of a shallow sort. Whatever you imagine other people think of you (it doesn’t matter; all that remain is how you make them feel).
* Not knowing about or accessing the power of psychedelics. For a long time I imbibed and accepted the ’60s or ’70s narrative that psychedelics were for losers and could make you go mad. Michael Pollan’s book How To Change your Mind was essential here.
* Being afraid to be a beginner again.
* Chasing the projects of youth too far and too long.
* Being overly accepting of the “age is just a number” idea. There’s some truth in this saying, but a lot of cope, and it’s possible to get the truth without the cope. Most of us prefer the cope, however.
* There’s a lot I can’t control—including most things—but I can control my attitude. If I choose to. The “choosing to” is hard.
* You’re the sum of the five people you’re closest to and with whom you spend the most time. So choose well. I’ve often not.
* Smart, competent people congregate in particular places, and I wish I’d spent more time in those places and less time not in those places.
* Pretty much no one accomplishes as much alone as they do in groups dedicated in common goals and mutual improvement. I’ve spent a lot of my life searching for and not quite finding those kinds of groups, which makes me think about what I could’ve done differently.
* In different times and places, different important things are happening. I got overly interested in the dying dregs of literary culture, and have underinvested in what’s uniquely happening now. There’s still some utility in literary culture, but there’s a lot more elsewhere.
* You can’t do two things at once and multitasking is closer to no-tasking. Pick whatever you’re working on and ride it out. Cultivate flow.
* Some people are not going to get it and need firm boundaries. When you, or I, identify those people, pick the boundaries and hold them. The people who don’t get it also often least understand and respect boundaries.
* Life’s complicated and people have all kinds of things going on. Whatever people are doing probably makes sense from their perspective. Which doesn’t make what they’re doing right, but it may make it comprehensible.
* I don’t regret time spent building, making, and doing things. I do regret excess time passively consuming, particularly video.
* Habits compound. Including bad ones. The bad ones I regret, although I won’t list them here.
* Impatience with the right people is really bad. So is losing one’s temper with the right people.
* Incentives matter.
* Abundance is good and scarcity bad. Work towards abundance but don’t be ruled by material things either.
* No one, including me, gets to the end and is happy about staying on top of email. But don’t totally neglect logistics either. They have their place, typically at the end of the day.
* The people who win are the ones who love and master the details. And the ones who master the right ones. I too often mastered the wrong ones (like the aforementioned investing in the dregs of literary culture).
* Something else I don’t regret, and a common pitfall avoided: wasting a lot of time on “social” media, TV, and other forms of semi-addictive junk. I’ve made mistakes
* Being mean when I didn’t need to be, which is almost all of the time.
* Understanding that tact can, properly used, enable directness.
* Not looking into that thing on my tongue in July 2022, when I first noticed it, but that is very specific to me and probably not generalizable.
Reading through these, I realize that a lot of them are more about my generation than me as an individual: I made a lot of the same dumb mistakes a lot of other people made. When I was young, I thought I was different, and totally in control of my own destiny—and everyone else probably thought so too. And yet it turns out that I erred in extremely common, boring ways.
“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’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.
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