Turning two lives into one, or, things that worry me about Bess, after I’m gone

August 30, 2023 By Jake Seliger in Essays, Personal Tags: cancer, dying, personal 2 Comments

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:

Bike-Fall

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.

Turning two lives into one, or, things that worry me about Bess, after I'm gone — *Us on Wednesday, Aug. 30, 2023.*

On being ready to die, and yet also now being able to swallow slurries—including ice cream

August 27, 2023 By Jake Seliger in Books 8 Comments

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 (my wife) 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, though, 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. But the other part of being ready to die comes from how much living physically sucks for me, much of the time, with a lot of struggles concerning breathing and mucus.

The breathing and mucus are related; if you’ve spent much time around me, you’ve seen and heard that I’m endlessly trying to hack up mucus—and sometimes succeeding. If you’ve not spent much time around me, take my word for it, and enjoy that no demonstration videos are included. I’m constantly attempting to clear the back of my throat and spit mucus up. The attempts to hack up and spit out mucus can sort of work for a short period of time, but even when I hack up a huge blob of mucus, the feeling of needing to do so again, or drowning, returns within a few minutes. Often, I’m attempting to hack up mucus that won’t quite come out. I struggle for hours against some plugs, knowing that they’re in my throat but unable to expel them. It feels like I’m heroically and single-handedly supporting the Kleenex industry with all the tissues I’m going through.

I can never breath normally. Never. Not even when things are going relatively well. Contemplate what that means. You’re probably breathing normally right now, and not even noticing that you’re breathing, which is what my life was like until the massive May 25 surgery, which left me without a tongue. The prior surgery in October 2022—my first for the squamous cell carcinoma—and even the IMRT radiation from December 2022 to January 2023 were not easy, but I’ve described them to friends as “predominantly cosmetic damage.” My body repaired itself tolerably well in response to the first bout of treatment. By March 2023 I could speak and swallow within spitting distance of normal. Recovery wasn’t instantaneous but most of my original functions and functioning returned. Strangers might have wondered about the neck scar, where Dr. Hinni,* the ENT who led the surgery, removed all the lymph nodes from the left side, because squamous cell carcinomas of the neck usually metastasize first to the lymph nodes. Those lymph nodes were all clean, leading Dr. Hinni to think that, after a successful surgery where the margins were clear, and radiation to kill any remaining errant cancerous cells, I’d be healed.

During my first appointment with Dr. Hinni, in September or October 2022, after reviewing treatment options, he leaned forward, took my hand, patted me on the shoulder and said, “Don’t worry. This isn’t going to be what kills you.” If this were a novel, an editor would chide me for a too-obvious Chekhov’s gun. “Everyone knows what will happen if you write this,” the editor would say. But I didn’t anticipate my life would be narrated by a heavy-handed horror author. Joke’s on us. On April 26, 2023, the first post-treatment PET scan showed a hot spot that turned out to be a squamous cell carcinoma at the base of the tongue. Half the tongue was supposed to come out, and be replaced with a “flap” of muscle taken one of my quadriceps. Instead, when Dr. Hinni got into the surgery, he found that the cancer had spread across the base of the tongue, invading not only the left lingual artery, which provides blood flow to the left side of the tongue, but the right lingual artery as well. Without those arteries, the tongue can’t survive.

Dr. Hinni also discovered that the tumor had extensive perineural invasion—meaning it latched on to, and probably traveled to the base of my tongue through, important nerves controlling neck muscles and oropharyngeal sensation. Some of those cancerous nerves had to come out, and I guess at least one controlled mucus, because today I feel like a mucus factory. The inflammation from the massive surgery and the tumors creates yet more mucus. The radiation, which, while minimally affecting my cancer, left me with the gift of salivary gland changes, so now my body produces a particularly thick, sticky mucus. I can’t properly feel that mucus because I’m missing sensation in half my interior oropharynx. Because of the surgery and nerve removal, I can’t swallow normally to clear the mucus. It’s difficult to wrap my head around the knowledge that I can’t feel half my throat, because it’s hard to imagine a more pronounced feeling than the one I live with day in, day out. This mutant mucus either gets created in my mouth or throat, or flows relentlessly downwards from the back of nose.

Consequently, every breath enters my nose or mouth and triggers a Rube-Goldberg-like chain reaction of misery. The mucus captures my attention and sends a signal that says: “Hey, you can’t breathe correctly. Attend to this.” With every breath, that signal registers, encouraging me to try to clear my throat or else warning my conscious mind that I might not be able to breathe. This happens all day, every day, as if on a mechanism whose trigger to start the process over is the moment I finally clear my airway. It’s like being in an ER with a beeping airway machine that never shuts off, ever, and that can’t be fixed or silenced. While I tried to dismiss earlier surgery and radiation as “cosmetic damage,” despite the struggles they brought, that massive May 25 surgery is “structural damage.”

I’m like Sisyphus pushing his boulder up the hill, except the boulder is mucus, which seems worse—at least a boulder doesn’t stick to the hill. I’m a little better at swallowing than I used to be, but I can’t tilt my head back much to get enough of an assist from gravity, because my neck is so tight from surgeries, from scar tissue, and from radiation. Swallowing—one of the acts that might help—is made far harder by neck tightness. My neck is getting tighter, not looser, over time, because radiation scarring tends to present many months after the treatment. And the area is filled with post-operative scar tissue. And, maybe most importantly, this is where the tumors are growing. I’m trapped in this tightening, constricting, gooey head-and-neck system that I can’t escape from and that causes me to constantly be spitting into tissues or sinks or the ground or whatever other appropriate receptacle I can find.

My neck, and my universe, feel steadily more constricted.

When I’m infusing food—which eats like four hours, daily—through the peg tube in my stomach, the mucus problems become worse, as if my body is readying itself to take food in through the mouth, but none comes via the oral route. When I wake up in the morning, or at night, I’m dry, and the mucus plugs are even harder to expel than they are during the day. When I try to speak, I’m often stymied by mucus rattling around and preventing my vocal chords from vibrating freely. To speak, I must try to hack up mucus first, which isn’t a great way to start or have a conversation.

So often I feel disgusting all day, every day, because of the endless effort to hack up mucus. Sometimes I succeed. It’s gross for me, and it’s gross for whoever might be around me; friends are very polite to say that it’s fine, and I appreciate the politeness, but even if it’s fine for them, it’s disgusting for me. I leave trails of spit-out saliva and spit-up tissues wherever I go. All day I’m physically weak. All day my body hurts from lack of motion. Those cancerous nerves had important functions, and, while I obviously understand why they had to be removed, they’re part of the irreparable structural damage, which can’t be wholly assuaged. If you’ve guessed that these physical problems lead to poor sleep, you are correct. I’m very different, in worse ways, than I was.

When the tracheostomy tube came out—I had what amounts to a plastic breathing tube sticking out of the base of my neck for six or seven weeks after the surgery—I thought that I was making irreversible progress. Instead, getting the trache removed did increase comfort and wholeness because there wasn’t a foreign body poking into and out of my neck, but I also had to learn to suffer breathing through and battling the mucus,, I don’t want that tube back, but it did bypass the mucus junction.

I look for upsides. I let Bess’s love succor and sustain me, I try to make progress, I have moments when I laugh, I celebrate the wins—and yet the base fact of being irreparably damaged remains. The struggles with breathing remain. The persistent intrusive thoughts about whether this thing, life, is worth it, remain. They’re not questions therapy can help with. They’re questions intrinsic to the damage.

Without those nerves between my neck and mouth and nose, and without a good ability to swallow, my lot is constantly fighting the mucus attacks. I feel like a human mucus factory. What’s the end of this? When is the end? Sometimes, I’m ready for it.

Look, since you’re probably thinking it, and before you point it out, let me say that I’m aware that there’s worse suffering in the world than hacking up mucus and feeling like I can’t breathe. There are displaced persons in war-torn countries, and persons who may have experienced horrible brutality or seen horrible brutality visited on their families or friends. There is the savagery and prosecutable cruelty the Russian military is inflicting on and in Ukraine. Comparatively, there are people worse off than me who seem to find ways forward towards meaningful lives. In some ways, my material universe is still impressive, and I’m blessed with love.

Napoleon Chagnon’s memoir Noble Savages: My Life Among Two Dangerous Tribes — the Yanomamo and the Anthropologists talks about what everyday life among the Yanomaö, a series of native peoples and tribes then living in Brazil and Venezuela, is like. Chagnon says he is “not ashamed to admit that” when he first met the Yanomamö, “had there been a diplomatic way out, I would have ended my fieldwork then and there.” The physical circumstances were that tough. Chagnon writes: “imagine the hygienic consequences of camping for about three years in the same small place with two hundred companions without sewers, running water, or garbage collection, and you get a sense of what daily life is like among the Yanomamö. And what it was like for much of human history, for that matter.” To Chagnon, the village smells of “decaying vegetations, dog feces, and garbage.” Yanomamö men appear to spend a lot of their lives with “strands of dark green snot [dripping or hanging] from their nostrils” because of their fondness for snorting a hallucinogenic drug called ebene. Men continually engage in small-group warfare and a huge proportion of adult men die in war, at the hands of other humans. A huge proportion of adult women die in childbirth, and many are abducted and then forcibly married to one of their abductors or into their abductors’ group. And that is normal life. Maybe that was normal life for most humans in most of human history, as Chagnon notes. I’ve never spent much time fantasizing about living in a past time, because life then was overwhelmingly filthy, mostly impoverished, and there wasn’t access to basic antibiotics, let alone chemotherapy, radiation and clinical trials. A future era? That I can and do imagine. I also imagine that I would’ve quit fieldwork even without a diplomatic way out. Maybe not on the first day, but as close to it as I could get.

“Normal” is a tricky word. Wherever we grow up is normal. Normal for me, now, means dealing with the mucus and drowning sensations. I feel recent suffering keenly. Enough suffering makes a person feel less than human, including me. Humans can get used to so much; can I get used to my problems? I’m not the first to wonder, as Bess did: “How much suffering is too much?” Viktor Frankl wrote extensively about suffering and human life, most notably in Man’s Search for Meaning (a favorite book). “Yes to Life: Viktor Frankl survived the Holocaust and created a new psychology in which the search for meaning—not pleasure or power—is mankind’s central motivational force,” by Samuel Kronen, is about Frankl, and it describes how “Life carries the potential for meaning under any circumstance.” I buy that argument, albeit with a heavy emphasis on the word “potential.” The gap between the potential and actual is often large, and it’s up to the individual to find and create meaning in life.

Frankl’s endurance and his apparent ability to not merely survive but to thrive is exemplary; I’m not sure how well I’d do after finding that “Except for his younger sister, who managed to flee the country, everyone in his immediate family, including his pregnant wife, Tilly, died in the Holocaust.” In Frankl’s version of psychotherapy, which he called logotherapy, “One could even say that the meaning of life is other people.” So how does one go on when the other people who are most important to you are murdered? Frankl’s life and writings are his answer. Like Dan, he seems to have developed a stunning ability to go on and remain positive in the face of adversity. As much as I admire Frankl, I find myself leaning away from this: “No amount of anguish or adversity can truly take away our humanity, he says. Being human precedes our capacity to be productive, functional, or even mentally sound.” I wonder whether being human is a binary thing or a matter of degrees; I lean towards the latter, which you can see in my comment about how enough suffering makes a person feel less than human.

I’m not able, or maybe willing, to sustain the positivity and meaningfulness of Frankl or Dan. At some point, to my mind and temperament, it’s not worth going on. But I can’t precisely demarcate point where there’s too much suffering or too much privation, though I’ve considered many scenarios. That I’m still here, right now, indicates the present privations aren’t too much. Not yet. Much has been taken from me, but I still have Bess’s love. I can still locomote. Speech is garbled but possible. 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.

Despite the mucus, I have some victories: I can swallow some food and have gotten steadily better at swallowing. Maybe a month ago, my friend and speech pathologist (in that order) Jessica Gregor helped teach me to swallow again. 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, I swallowed some ice cream slurry: the 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, there are taste buds at the back of the throat and esophagus. So I could taste ice cream. 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.

The victories aren’t complete. The mucus still interrupts eating: anything I swallow seems to get trapped in mucus. I swallow some food, and, when I’m done, I have to hack up food-infused mucus. There’s no clear path, I guess, from mouth to stomach without traversing a mucus swamp. The mucus swamp seems to increase the drowning sensations from slurries, and the sensation that food is going down the airway, even when it’s not. Jessica did a “Fluoroscopic Swallow Study,” which essentially means taking an x-ray video of me swallowing, to see where the swallowed substance goes. It confirmed that I’m not swallowing into my lungs, though every time I swallow I feel like I might be. That sensation, like the drowning sensation from mucus accrual, is disconcerting, but what can I do about it? Very little, it seems. Mucinex, suction, saline nebulizers and increasing my water intake does something, sort of, but not enough. For however long I live—and Bess has a good lead on a clinical trial, as well as an essay in the works about how the clinical trial process actually works (and how insane the process is)—the drowning sensation will be haunting me.

But I do get to taste some ice cream again, before the end.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

See also: “How much suffering is too much?“

* If you have the misfortune of having a head or neck squamous cell carcinoma and live in the Phoenix area then, as of this writing, you want Dr. Hinni or Dr. Chang at Mayo to operate on you. Many things in my life have gone wrong, but Dr. Hinni operating on me is one of the things that’s gone relatively right.

Links The True Believer, effective discipline, the great (cultural) stagnation, and more!

August 25, 2023 By Jake Seliger in Links Tags: Links 1 Comment

* China’s defeated youth.

* “Without Belief in a God, But Never Without Belief in a Devil: On The True Believer: Thoughts on the Nature of Mass Movements.” Are you a True Believer?

* “How to discipline kids effectively.” On incentives and behaviorism, among other things. Skinner gets a shoutout.

* “In 1970, Alvin Toffler Predicted the Rise of Future Shock—But the Exact Opposite Happened.” A culture-focused great stagnation essay.

* “Asphalt Wasteland: Maybe parking really does explain the world.”

* “Moderna reveals Claudin18.2 ambitions via cancer vaccine, solid tumor CAR-T combo plans.” Does the tongue count as part of the digestive system? There’s no mention of head and neck squamous cell carcinoma here, alas.

* “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.

* Becoming a magician.

* “Why Britain doesn’t build.”

* Colorado works to ameliorate its housing crisis by moving housing decisions to the state level and increasing the freedom of landowners to build.

* “Celebrating Marginal Revolution’s 20th Anniversary.” An amazing and tremendous achievement.

* “Steel industry makes ‘pivotal’ shift towards lower-carbon production.” The shift is towards electric arc furnaces and away from blast furnaces.

* The NIMBY tax on Britain and America. (Financial Times, $; Archive Today link). “Supersized costs and bloated durations are not unrelated.” And:

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.

Seeing as a doctor, seeing as a wife

August 23, 2023 By Bess Stillman in Personal Tags: cancer, personal 1 Comment

My wife, Bess, wrote this.

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 moments before bed.

“Now,” Jake had decided, looking at a clump of hair in his fingers, “let’s 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 merely 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 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 door frame 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. Five years ago, she’d been sitting where I now was, 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, see just 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 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 blind only 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 mean more than the 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 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.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. In addition, Bess is now writing a Substack. You should subscribe!

* Something serial killers and ER doctors have in common.

I know what happens to me after I die, but what about those left behind?

August 21, 2023 By Jake Seliger in Personal Tags: cancer, personal 14 Comments

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.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

Links: Life’s terror and beauty. Also, the need to build more and faster

August 20, 2023 By Jake Seliger in Links Tags: Links Leave a comment

* Life is so terrible and beautiful at the same time.

* “The Age 30 Crisis and Seasons of a Man’s Life.” Linked more to the first link than may be apparent at first glance.

* “America’s Long, Tortured Journey to Build EV Batteries.” (Bloomberg, $).

* “Conservatism as an Oppositional Culture?”

* “To speed scientific progress, do away with funding delays.”

* “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.

* “$7,200 for Every Student: Arizona’s Ultimate Experiment in School Choice.” It’s possible many public school personnel have overplayed their hands.

* 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.

* “The Coming Apart Case for Less Entitlements.”

* Arts & Entertainments by Christopher Beha. A fun book, and a light one (deceptively light, maybe) of the sort I wish there were more of.

Trying to be human, and other mistakes

August 19, 2023 By Jake Seliger in Books 4 Comments

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. I’m also not the only person to have noticed that normal conversations can (and should) be made better.

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.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

How much suffering is too much?

August 16, 2023 By Bess Stillman in Personal Tags: personal 12 Comments

This is by my wife, Bess. You can find her new writing on her substack.

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 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.

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 14^th 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. See especially “On being ready to die, and yet also now being able to swallow slurries—including ice cream.”

Links: Paul Graham interview, the nature of Germany, the depredations of the car, and more!

August 12, 2023 By Jake Seliger in Links Tags: Links Leave a comment

* “To most people, reading and writing are boring and unimportant.” It starts:

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.

* Paul Graham interviewed by Tyler Cowen on Ambition, Art, and Evaluating Talent. Excellent.

* On the Marble Cliffs. Which is also a history of Germany. And a history of Europe. And some other things.

* “China hacked Japan’s sensitive defense networks, officials say.”

* “I thought I wanted to be a professor. Then, I served on a hiring committee.”

* How the car came to L.A., and destroyed it.

* The frontiers of tunnel boring. We should have more subway tunnels and tragically don’t.

* “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.

* Too much comfort is itself bad.

* “How does credit card debt collection actually work?”

* How Institutional Review Boards (IRBs) block medical breakthroughs. Congruent and consistent with my complaints about the FDA slowing medical discovery and dissemination, which I’m now paying for with my life.

Regrets:

August 12, 2023 By Jake Seliger in Culture, Personal Tags: regrets 2 Comments

I read Ryan Holiday’s “24 Things I Wish I Had Done Sooner (or my biggest regrets)” and thought I’d steal adapt the format; I wrote these quickly, with the goal of getting out answers—sort of like “Influential books (on me, that is).”

* Not trying to have kids sooner—much sooner.

* Not fundamentally growing up sooner—much sooner.

* Wasting time in humanities grad school (this is identical to the second point). It was fun at the time but the opportunity cost was so, so high.

* 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.

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