Uncomfortable truth: How close is “positivity culture” to delusion and denial?

June 24, 2024 By Jake Seliger in cancer, Culture, Essays Tags: cancer, Culture, Essays 3 Comments

“Positivity culture” is tricky to define but easy to feel, especially for someone like me, whose fatal cancer diagnosis elicits many responses rooted in the desire to evade the discomfort of imminent mortality or to seek false control because true control is out of reach. I notice positivity culture in responses from friends, family, strangers, and strangers on the Internet who say “look at the bright side” or “other people have it worse” or “you are lucky in some ways.” It’s the people who say I should stifle or cut off “negativity.” Though those people are not wholly wrong, they’re also missing a lot.

Positivity culture is adjacent to therapy culture, which I’m also ambivalent about: therapy is useful to some people in some circumstances, but for many it’s become a crutch and, often, a form of narcissistic dysfunction that denies true obligation to other people, as therapy itself becomes a replacement for authentic relationships and family. Real friendships and relationships aren’t about what happens when things are happy and convenient; they’re about what happens during difficulty, strife, and inconvenience. Who are you when things get hard? “Plenty of People Could Quit Therapy Right Now: Except in rare cases, treatment shouldn’t last forever” says:

There’s reason to believe that talk therapy in the absence of acute symptoms may sometimes cause harm. Excessive self-focus—easily facilitated in a setting in which you’re literally paying to talk about your feelings—can increase your anxiety, especially when it substitutes for tangible actions.

Therapy can promote self-absorbed navel-gazing. It’s like people who read too much and do too little: there’s an optimal amount of reading, which is less than I did in my teens or twenties. Too little, and a person is ignorant and not adequately benefiting from the learning of others. Too much, and a person is inert, without a perspective and drive of his own, too mired in the words of others. Some positive encouragement is good, particularly when depression leads to inaction and further problems. Too much is denial. Balance can be hard, but I see a default to excess, false cheerfulness.

“Why Positivity Culture is A Problem” is stashed behind a paywall now, but its author identifies cultural tendencies similar to those I’ve noticed. Another, congruent view is articulated in “The Opposite of Toxic Positivity: ‘Tragic optimism’ is the search for meaning during the inevitable tragedies of human existence, and is better for us than avoiding darkness and trying to ‘stay positive.’” “Tragic optimism” seems to me close to a stoic attitude, which admits sadness into life without being dominated by sadness. Look, I like optimism. Being around optimists is often more fun than being around dour pessimists. I just don’t want optimism to bleed into folly or inanity. The lines are blurry.

Gratitude is good. Having some perspective is good, even though I’m not sure what “having perspective” means. From a sufficiently cosmic perspective, our lives can look kind of pointless and meaningless, which seems bad, and maybe it’s better to imbue life with a meaning that doesn’t intrinsically exist. Maybe the optimal amount of perspective is as tricky a line as the right amount and kind of positivity.

I recently read “The Optimists Ended up in Auschwitz.” As you can infer from the title, the people who looked on the bright side didn’t flee Germany in the 1930s, and the people who were less convinced of the goodness of the mob ran, survived, and passed on their genes. Optimism is often but not always warranted, and pessimism exists because bad things do in fact happen, and, if we ignore them, we can die.

Too much catastrophizing seems just as bad as putting a happy spin on everything. If you always, then you stand still as the problem runs over you. When I first had pain on my tongue, I thought I’d bitten it. Bess identified nothing abnormal on the tongue’s surface, and so it seemed reasonable to wait and see if it improved instead of giving into hypochondria and rushing to the hospital like the patients Bess sees in the ER every time they feel a small twitch or twinge. The pain continued, and I saw a strange patch of skin on my tongue, and that stimulated me to act (albeit too slowly). During my most recent infusion of PDL1V, I talked to a guy who said he noticed pimple-size mass erupt on his hip, and over weeks it grew to the size of a saucer. His response to that and other symptoms was apparently to see a chiropractor and acupuncturist. I found his story baffling, though I know from listening to doctors’ stories that denial is powerful.[1]

When someone pitches positivity to me, I know there’s a kind of self-interest lurking in the pitch.[2] Most of us prefer to hang out with someone who’s upbeat to someone who is dour. Yet negative people are often funnier—better able to see life’s absurdities, which is to say human absurdity. I’ve gotten a lot of positive feedback on the humor in my cancer writing, and that humor germinates, I think, in my cantankerous side. It’s not that I actively try to cultivate cantankerousness—I’m no Larry David[3]—but I have to notice the negative, often absurdist facets of the healthcare system. At the same time, emotional honesty compels me to speak, maybe too voluminously, about the pain of premature death for those left behind. That pain just sucks. There’s no compensating wisdom. Occasionally, the more things suck, the better fodder they are for dark humor. That’s sometimes life. Bess reassures me that, when I think some of the things coming out of my mouth—or usually, keyboard— are “too dark,” I should just ask her to repeat some of what emergency healthcare workers say on a near-daily basis and I’ll be in excellent company.

In the U.S., we’re bad at dealing with things that just suck. Pain and adversity often teach nothing except how to access the angry, petty aspects of our natures. A friend recommended It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand by Megan Devine; the book is useful, though it should really be a 5,000- or 10,000-word article.[4] It starts: “The way we deal with grief in our culture is broken.” How so? Devine says: “Platitudes and advice, even when said with good intentions, came across as dismissive, reducing such great pain to greeting card one-liners.” The intentions are good, but they misfire because “Our culture sees grief as a kind of malady: a terrifying, messy emotion that needs to be cleaned up and put behind us as soon as possible.” Sometimes life is terrifying and messy—themes Bess often describes in her work as an ER doc [5]— and Devine argues that grief often can’t be assuaged, except perhaps by time; although “most people approach grief as a problem to be solved,” grief is often not solvable at all, let alone in the short term. The perspective that grief, an inevitable part of the human experience for everyone except sociopaths, is a “problem” is itself a large part of the problem. Get a fundamental cultural supposition wrong and everything that follows is going to feel wrong.

Instead, Devine says grief is deeply felt, and often continues to be felt for longer than it “should be” (however long that is), and often the best thing for friends and family to do is nothing but sit and be present. I guess they can stand and be present, too. Most of us are uncomfortable and impatient with grief, so the advice to buck up, move past it, stay positive, etc., is really about making the person speaking feel better—not the griever. According to Devine, “Even our clinicians are trained to see grief as a disorder rather than a natural response to deep loss.” The commonplaces people say are detrimental, not helpful, in Devine’s model: “Platitudes and cheerleading solve nothing. In fact, this kind of support only makes you feel like no one in the world understands.” Is it true support? When friends and family inadvertently reach for clichés, the effect is the opposite.

Sometimes things happen for no discernible reason. Sometimes things happen and there is nothing to be learned from them. I for one think I’ve learned nothing from having cancer or losing my tongue, apart from the obvious, like “both suck.” Neither has made me stronger, better, more empathetic, or anything else positive. I’m not a better person. I don’t appreciate life more. People have told me my writing about my experience is helping other people, which is good, but writing about my illness has taught me that I’d prefer to be writing about something else in order to help people. It’s all bad, no good. I’d prefer not to have whatever wisdom pain might impart. Devine says: “As a culture, we don’t want to hear that there are things that can’t be fixed. As a culture, we don’t want to hear that there is some pain that never gets redeemed.” Instead, we want people to be positive and look on the bright side, even when both are lies.

Devine says that “Talking with people in new grief is tricky. During the first year, it’s so tempting to say that things get better.” There’s sometimes some truth to this: things are better for me right, now, today, than they were in June to August 2023. But they’re forever going to be worse than they were before cancer. To claim otherwise is not to put a positive spin on things; it’s to be willfully delusional. Positivity easily shades into delusion. “There are some events that happen in life that cause people to cross a threshold that forever changes them, whether they seek out their transformation or not.” I like that Devine is willing to imply that transformation can be bad. Sometimes there isn’t compensation for suffering. Sometimes suffering is, tautologically, just suffering. Not everything is meaningful and trying to impose meaning on it—or trying to impose meaning on it for the person experiencing it, so that you can feel that, should the same happen to you, it would be meaningful and not just arbitrary and terrifying—can backfire.

Being sad or unhappy or similar is telling us something. Sometimes it’s telling us to change. Sometimes it’s telling us something else, I think. Sometimes the feeling is just wrong, as is our potentially myopic interpretation of a situation, and, when a feeling is wrong, that’s when positivity culture may help. But negativity isn’t always wrong or pathological, and improvements come from realizing something is not going right and then fixing it. Or recognizing that something can’t be fixed, and the time is now to sit with the unhappiness.

To reiterate, I’m not against positivity and, like most people, I’d prefer most of the time to be around positive people than negative ones. But I also prefer to be around truthful, accurate people more than the delusionally optimistic, and though I can’t firmly mark the line between them, I know it when I see it. I appreciate what the friends who tell me to excise the negative are saying, even when I don’t follow their suggestions. Sliding into darkness and then the void is easy. Many aspects of my life do in fact suck, particularly compared to my life before the cancer diagnosis. Perhaps paradoxically, part of what’s allowed me to keep going is to acknowledge and be honest about what is going wrong, while trying to focus on the things that remain that are going right: mostly my relationships with other people, Bess, and still being able to write and contribute. Seeing that there are things to live for doesn’t negate or cushion the blows from the things that make living awful and hard, but neither do the things that have made me consider auto-termination negate the things that are still good.

The worst parts of the positivity people are the ones who reject sickness, setback, and ailment altogether—the “fair-weather friends” of cliché. The people who are “friends” with you, but when something slightly inconvenient comes along, they don’t want to hear about it—they’re obviously not friends, not in any significant sense of the word.

Sitting with someone who is ill, talking about it frankly, and the new challenges and fears it creates, puts the sitter in a position of closeness with the ill person, and therefore closeness with that person’s illness or loss. “If it’s happening to this guy, it could happen to me,” those clinging to the security blanket of positivity culture seem to be thinking. But, even for those who aren’t made uncomfortable by the thought of their own fragility, listening to someone’s personal experience with illness establishes a kind and depth of intimacy most people just aren’t really interested in. We’re a culture of surface, not depth. We more frequently say, “Hey, how’re you doing?” to people while we’re actively in transit, unable and unwilling to stop and hear a real answer. “I’m fine,” is rarely the truth, but it’s easy to imagine the discomfort we’d cause by answering, “My marriage is on the rocks and I’m worried about my last performance review, I could really use a friend to talk with over coffee.” We know the person asking doesn’t really want to know. I’m fond of saying in response to “How’re you doing?” that “I’m dying, which is painful and quite bad. How are you?”[6] Positivity culture is often a canned response to deflect and discourage real conversation. It’s a cutoff in the guise of the curative powers of pretend. It’s faux-connection. It’s bullshit. And our conversations are already infused with too much bullshit. I’ve already imposed a moratorium on banalities. Bullshit might be considered banalities’ equally useless relational first cousin.

Everything is not fine, not all the time. Not for me. Not for you. Though the gradations of “not fine” vary, shutting our eyes against the inevitable instead of finding a way to weave it into our lives, use it to forge connections with other equally fragile human beings, and use that knowledge to generate connection, is shutting our eyes against our own humanity. Sometimes a seemingly sunnier, happier perspective is an alienating, temporarily comforting lie.

The Buddhists have a meditation on death called “Maranasati.” You lie there for a while and dwell on the fact that, barring technological innovation like the Singularity, you’re going to bite it one day. You stop deluding yourself that you’re not a part of the human condition. Like many worthwhile things, Maranasati isn’t meant to be comfortable, even if you pay $30 to be led through the meditation in a fancy downtown LA yoga studio smelling of Frankincense and populated by flexible twenty-somethings who inspire thoughts very different than those of meeting your untimely end. Sometimes embracing the uncomfortable brings a paradoxical comfort, and sometimes embracing what appears to be comfort is just wallowing in bullshit.

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

[1] His story was also garbled and nonsensical, and I didn’t have the energy to seek real clarification.

[2] Often unconsciously.

[3] Larry David, and other comedians, being interesting examples of people who other people like to hang around typically because of their generative negativity.

[4] The excessively length and repetitiveness is a symptom of the publishing industry’s pathologies, but that’s a rant for some other time.

[5] On the flight to Manifest, the nerd conference associated with the Manifold prediction markets, Bess and I sat near a guy who works as some kind of project manager for constructing data centers. He said he likes working on buildings because the process is so much cleaner and neater than working on or with humans. Working in the ER might melt his mind, since so much of it is the antithesis of clean or neat.

[6] Bess has a half-finished essay on this tendency, and the tendency of people not to listen. When I answer in a chirpy voice, “I’m dying, which is pain and quite bad,” some people go, “That’s great man, good to hear it.” Listening is a rare skill.

Manifest, the Manifold Markets nerd festival

June 13, 2024 By Jake Seliger in cancer, Cities, Culture Tags: berkeley, Cities, Culture, festival, manifest, manifold 3 Comments

Bess and I went to Manifest, which bills itself as “A festival for forecasting and prediction markets,” a description that may technically be true but fails to capture the spirit; to my eye and experience, it’s maybe more accurately stated as “Substack and Twitter live” or “a mixture of festival-conference-party-Burning-Man for nerds with many interests to show up and enjoy each other’s company.” Which is just to the temperament of Bess and me (though I’m still on a legacy WordPress platform; a year ago I thought about switching to Substack but didn’t because I thought I’d not be alive long enough for the switch to matter). Bess excitedly exclaimed it to be “Nerd Camp!” with a sort of takes-one-to-know-one gleam in her eye.

There’s something about seeing people in real life that makes me bearish on efforts to build the metaverse, which may be an improvement on text / audio / video but still don’t seem likely to replace live in-person interactions. Meeting in real life creates a kind of vividness and immediacy that online doesn’t (yet) create, and Manifest does just that. I recognized a huge number of people whose Substacks I’ve commented on and whose tweets I’ve replied to. A lot of people in turn recognized Bess and me, for our writing about the FDA killing people via inaction. Manifest attendees manifested a kind of earnestness that a better world is possible, that data should guide actions, that one should change one’s mind in the face of new evidence, and that what initially seems to be true may not be true. Those are all useful traits in getting past the FDA’s PR (something like: “we keep you safe from predatory drug companies”) and into the FDA’s substance (something like: “we don’t care if people are dying while our process runs; our process needs to run”). Nerd Camp was filled with people who believe that a good future is based on better predictions, and better predictions take both knowledge and calculated risk. No risk, no future: at least not a future that circumvents stagnation, and certainly not a future I am in.

The vast majority of the world’s information and ideas aren’t written down or otherwise recorded. It or they exist in people’s head and are expressed verbally. Gatherings of smart people don’t seem like they’re likely to be obsolete soon, which might qualify as bearish on AI. A humorous conspiracy theory called “Dead internet theory” claims that “the internet now consists mainly of bot activity and automatically generated content manipulated by algorithmic curation, minimizing organic human activity.” Manifest is an existence proof of the opposite, a real-life CAPTCHA: the people writing Substacks and making podcasts are gathered in one place. Would the people be the same as their online personas? Could they be better? One guy recognized my nametag and was like: “Hey, you’re the guy who lived!” Bess and I laughed.

Every single person Bess and I talked to was substantive, curious, and interesting, with the middle term being especially important. Given my lack of tongue, a common non-verbal reaction I get in everyday life is the other person thinking: “Why is the retard trying to get my attention?” I could use a more politically correct term, but I get the impression that that’s the one running in their mind. Anyway, I sensed none or almost none of that, despite being in fact very hard to understand. It’s a little like having a heavy foreign accent that no one else has; I’ve noticed that people who work in the tech industry, where people commonly show up from all over, are on average better at understanding me. I now do poorly at conferences yet I’m glad to have made Manifest. Bess observes that there is an assumption of competency at Manifest. Yes, many people had read us, but certainly not all. Everyone there, regardless of age or gender, was approaching interactions from a place of assumed reciprocal intelligence. Maybe this is what it’s like when everyone in a room acknowledges theory of mind. Or maybe it was from the sort of temporary tribalism conferences can create: “I think may people in this room are smart, therefore I am smart, therefore I, and everyone here, is part of this smart group of people.” Whatever it is, it’s a great way to approach a weekend.

One person said that she feels like everyone is somewhat autistic, and all conversation is in the form of parallel, consensual info-dump, or nothing. To me, greater informational content is great. A friend of ours met us on Sunday night, and she described it as a “carnival of the neurodivergent.” To which I say: great!

AI was a big issue there, and there seemed to be more people working on advancing AI than there were people working to advancing what’s sometimes called AI safety. The accelerationists and safetyists would be in the same room, sometimes debating each other, sometimes not. It’s interesting how discontinuous the AI contingent, whether safety or accelerationist, think the near future is going to be.

I’m undoubtedly not the first to contrast, on the one hand, claims of unique historical discontinuity from AI changing the world with, on the other hand, the stasis evident in the physical plant of Berkeley and other Bay Area cities. Bay Area cities have built hardly anything since the ‘70s, if not earlier. Infrastructure is ancient and rundown (including housing, roads, transit). We’re going to build the future in every respect, except for the physical world in which all the AI programmers live. Not even the many billionaires of the Bay Area have managed to build modern subways. Yet there is some upside to not having built “modern” infrastructure when that “infrastructure” consists of stroads and parking lots. Berkeley is still a walking or biking town, and Bess and I walked more than I have since the surgery in May 2023.

On a personal level, Manifest was amazing because it’s the first time since losing my tongue that Bess and I have gone anywhere or done much primarily for fun. Cancer treatment and cancer-related disability have dominated my life in the last year. Manifest first got on my radar when Austin Chen (co-founder of Manifold, the prediction market) emailed me in March. I looked at the Manifest website and thought: “This sounds awesome.” Bess is less keyed into Internet nerds than I am, and I had to try to explain to her who many of these people are; it’s a bit like a European trying to explain soccer to an American, or, worse, an American trying to explain American football to a European.[1] But she was happy at the prospect of going somewhere that isn’t a hospital and doing something that isn’t treatment.[2] We’ve lived in Arizona for four years and found few of our people here.[3] We’d probably have been better served moving to Austin, but the market for ER doctors is worse there, and we didn’t realize that headlines like “Apartment rents plummet in Austin” due to new housing construction would become common, while Arizona governor Katie Hobbs would veto housing bills designed to increase supply. Crazy! Anyway, most Manifest attendees appeared to be from California, but a significant number were from Austin.

If me going to Manifest had been a Manifold prediction market, the probability would’ve gone up and, mostly down, between me learning about the conference months before and getting there. Much had to go well, in a year and a half where almost nothing has gone well, that, despite booking plane tickets and a place to stay, I wouldn’t have placed a large-value bet on myself. In April I was terribly sick: tumors popped from the left side of my neck, making both Bess and me wonder if I’d live until May. On April 15 I began treatment with Seagen’s PDL1V, and the second dose of PDL1V on April 22 generated numerous adverse side effects. That week I also got some radiation therapy to try and counter the neck tumors. The good news is that the neck tumors necrosed and exited through a hole in the skin. The bad news is that I felt like garbage between April 22 to May 6, with side effects that challenged my ability to remain on treatment. But a new, extensive drug regimen helped me stay the course.

Then, last week, on Sunday, June 2, I noticed pain from the right side of my neck. Looking at it showed an unhappy red splotch—an infection. I started Keflex, an antibiotic, and hoped it would resolve the infection in time. Bess, doing what doctors do, poked at it (despite my protestations) and got some pus out. Unfortunately, I packed the Keflex in a suitcase with my Vitamix, checked the suitcase on the way to treatment to Utah, and then Southwest left the suitcase in Phoenix, which touched off predictable problems and resolutions. By Thursday I hoped I was well enough to fly, and that I wouldn’t need to upgrade from Keflex to Augmentin; the latter is like napalming one’s GI tract. Every morning during the conference, I wound up having to fight some gnarly GI problems, but I managed to get to Manifest by about noon. I managed to defy the implicit odds.

Lighthaven, the venue, was great, and the fridges well-stocked with Soylent, and I also saw pouches of Maya Kaimal Indian food. I didn’t know the specific brand name of Maya Kaimal, but I have some of them in my apartment and so could check. I saw a couple of Framework laptops, too, despite having seen just a few of them in the wild.

If I’m alive this time next year I’ll go back!

Other Manifest commentary:

Theo Jaffee has a good podcast and wrote “Manifest Manifested: One of the best weekends of my life at the best conference in the world.” I look to be older than him and while I thought it great, “one of the best weekends of my life” is a high bar. Then again, I don’t know what his life experiences have been or, more importantly, what happened at the Saturday night after-party which went till about 4a.m.
Robin Hanson calls it “probably my most pleasant event of the last year, since last year’s Manifest. :)”. With Robin, I feel like “pleasant” might be a slightly suspect word!
Bryne Hobart’s generalization of conference-going is behind a paywall, but he says that “The conference solves for specialization by inviting people around whom useful micro-subcultures nucleate, and it synthesizes high real estate prices by charging an entry fee (and plane tickets plus hotels are also going to have the same economic effect; they make time more expensive, so they raise the relative value of the highest-utility interactions)” and “Five minutes of in-person conversation create a more tangible sense of who someone is than years of occasional emailing, even if the emails are a better representation of their mental models. So future discussions are higher-bandwidth.” I’d not read until after writing a draft of the rest of this essay, I will add.
Tracing Woodgrains, someone I’d not heard of before but who appears to have some Internet microcelebrity, on Manifest: “For much of my life, I have poured my attention into tough-to-explain solitary pursuits, finding myself often sitting in quiet corners on the fringes of gatherings wondering if they’re worth the effort. Not so last weekend.” Woodgrains seems to have had an interesting life so far.
Bess says: “I will 100% return to nerd camp with you next year.” She is also looking forward to maintaining real-world connections via the internet.

[1] Which I’ve attempted, although not very successfully: I find American football tedious.

[2] Bess loudly and adamantly denies this characterization. “I think I know who Scott Alexander and Nate Silver are,” she squawks, like a penguin who wants a fish. “And I have a Substack!” Now she’s glaring at me. Now she’s explaining that she has never been able to understand the rules of football but is at least starting to understand the principles of writing for the internet as I’ve explained them. And she reads. Now she’s harrumphing, but is returning to continue editing this essay, so I must not be entirely off base.

[3] “Why stay, then?” you may justifiably ask. Jobs, family, and then me getting cancer all make moving impractical, and the gains from moving lower than they’d be if I were well.

The financial costs of healthcare costs, or, is keeping me alive worth it?

May 16, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, personal Leave a comment

Right now, from a society-wide perspective, the healthcare I’ve been getting to keep me temporarily alive against a squamous cell carcinoma onslaught probably fails the cost-benefit test.[1] In the short term, resources are finite and the tremendous financial cost of care likely isn’t worth the benefit of my life, relative to the costs of other interventions that would heal people with less serious maladies and longer life expectancies. Probably it sounds strange for me to say: “Keeping me alive isn’t justified,” but I think it worthwhile to be intellectually rigorous and honest even about sensitive matters like the literal monetary value of life. In some abstract metaphysical sense, human life might be beyond value, but we practically put a price tag on lives and risk to life all the time (example: “Studies of real-world situations produce relatively consistent results, suggesting that average Americans value a year of life at $100,000 to $300,000”).

I don’t have a strong view about the particular numbers, but the general principle is sound, and outfits like Givewell.org search “for the charities that save or improve lives the most per dollar.” Givewell’s top charities right now are for malaria prevention (“In 2022, we directed funding to the Malaria Consortium to support this program at an estimated average cost-effectiveness of $5,000 per life saved”) and vitamin A deficiency amelioration (“In 2022, we directed funding to Helen Keller International to support this program at an estimated average cost-effectiveness of $5,000 per life saved”). Unfortunately, “charities” like Greenpeace prefer to murder children by holding up “golden rice” that has vitamin A in it, but you can read more about that terrible choice at the link. Five-thousand dollars is less than the cost of a typical treatment I receive, but the mystery statements I get from my insurance companies indicate that more than $5,000 is being spent on me per month (though the numbers have more than a whiff of the made-up about them).[2] Recurrent / metastatic head and neck squamous cell carcinoma (R / M HNSCC) is incurable, too, so extra dollars don’t buy much time, and the time they do buy is degraded by pain, fatigue, inability to swallow, and so on.

The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. Participating in the MCLA-158 / petosemtamab trial, for example, yielded one more data point showing that petosemtamab shrinks notoriously hard-to-treat R / M HNSCC. By pursuing treatment through clinical trials, I’m helping others in the future (more on that later). Still, my quality of life is low, and while treatment has been extending my life, it almost certainly won’t lead to remission. Even if a clinical-trial drug somehow leads to complete remission, I’ll never be able to sleep or speak normally again. Life without good speech or sleep or swallowing or chewing is not easy, yet I’m trying to continue to contribute to the human enterprise within the many limitations I’m subject to. A few months ago, my brother casually referred to me being disabled, and I was momentarily confused: Who was he talking about? But he was in fact right: I’m disabled and unlikely to ever be able to think or work in the way I did before losing my tongue, which also lowers the value of any healthcare I receive.[3]

Some of these musings are adapted from Derek Parfit’s Reasons and Persons, and more directly from Peter Singer, who is I think the first to posit hypotheticals along the lines of “You are wearing an expensive suit and shoes worth many thousands of dollars. You see a child drowning in a pond. Would you leap in to save the child, and ruin your suit in the process?” Everyone says yes. But then why not donate the same amount of money to save a child in Somalia, or wherever? Aren’t those two morally and logically equivalent? Yet hardly anyone lives that way, myself included. There is some kind of immediacy bias in the human mind, where something proximate to us registers as more vital than something distant in space and time.

The rejoinder to the idea that one should curtail status consumption to donate to save distant people is usually something like: “They are poor and their healthcare systems work poorly due to social and government dysfunction; fix that dysfunction so that they become rich and the apparent trade-off will go away.” Countries like South Korea and Taiwan used to be desperately poor and now are rich because they adopted smart policies. Nothing is stopping many African countries from doing the same. India abandoned autarky and embraced markets, and now it is far richer than it used to be. Countries like Syria and Iran are not poor due to a lack of donations, they’re poor due to horrific governance by Assad and mad, freedom-hating mullahs.

Hypothetically, even a billionaire would probably hesitate to pay $1 billion for a single extra day of life; the vain and egotistical would prefer to build a monument or something, versus one day more. Most of the world’s poorest people would find a way to pay $1 if it could extend their life by five years. Between those extremes lie real-world tradeoffs, which are of course hardly ever so clean.

Insurance further muddies matters, because if someone else is picking up the tab, most of us want more treatment than we would otherwise. European countries with public health systems solve this problem through committees that decide which treatments are worth it; they also wrangle with drug companies to set price caps (the U.S. is the market in which drug companies make all their money, and consequently the FDA is the limiting factor on new treatments, which is why I complain so much and so vociferously about them). It’s not surprising that I personally would prefer other people pay more for me, and I personally would like to pay lower premiums, while everyone else would like the same for themselves. Moral hazard is operating. The U.S. has mostly chosen a high-cost, high-care regimen, while European countries have mostly chosen a lower-cost, lower-care regimen, which limits care for the walking dead like myself.

Scott Alexander observes that he’s “seen patients with terminal illnesses who are very happy they chose to just let it progress and not spend their last few years in medical trials, and other patients who are very happy that medical trials gave them another year or two with their family and whatever else they were trying to accomplish.” For me, I’m continuing to do clinical trials for the sake of Bess, and spending more time with Bess. Absent her, I’d have taken the opioid road in June 2023. Recovery from the total glossectomy demanded 24/7 care that I wouldn’t have been able to receive from anyone else, and I wouldn’t really have had enough to live for. We humans really live for one another,[4] and without other people and especially love, why bother?

Some of the healthcare I’ve received easily passes the cost-benefit test. Take the R / M HNSCC that’s killing me: I got a partial glossectomy in Oct. 2022. Mine had some high-risk features, but I was assured that, with radiation therapy, it wouldn’t recur (Bess recalls the exact words being, “Don’t worry, this won’t be what kills you”). If it hadn’t recurred, the costly surgery and radiation would’ve led to many more years of positive, fulfilling life. Hardly anyone will find surgery and radiation pleasant, but they left me without substantial, disabling deficits. In retrospect, however, I obviously should’ve been given chemo with the radiation, but at the time I was pleased to not need chemo, and I foolishly didn’t look deeper into the data on recurrence—which is common for HNSCC—and I didn’t seek second opinions. Some of those second opinions might’ve said: “Get the chemotherapy.”

Docs are justifiably reluctant to impose systemic chemo because of the side effects, and they have to weigh present bodily ravages against theoretical future ones when coming up with a treatment plan. But the future of cancer treatment is much less violent. Transgene, for example, has a personalized vaccine that is supposed to prevent HNSCC recurrence: “In the head and neck cancer trial to date, all patients treated with TG4050 have remained disease-free, despite unfavorable systemic immunity and tumor micro-environment before treatment.” That’s a tremendous boon, particularly if it doesn’t involve the deleterious side effects of chemo or radiation. Most of these personalized vaccines have essentially no side effects. Moderna’s mRNA-4157 platform looks great, not only in R / M HNSCC, but in melanoma and lung too. Right now mRNA-4157 is only being tested in the recurrent / metastatic setting, as far as I know, but the logical time to use it is probably when initial surgeries are done: cut the cancer, sequence it, and then vaccinate against it to prevent recurrence. Technology is going to reduce the trade-offs between “painful, difficult treatments with difficult short- and long-term side effects” and “successfully eliminating cancer.”

The future, which I’m distinctly though barely missing, is going to be brighter than the present. I’m reading a biography of Richard Feynman, whose first wife died of tuberculosis (TB) in part because the scientific / medical establishment wasn’t able to get its act together regarding antibiotics: “the first clinical trial of streptomycin” began with only two patients in the fall of 1944, despite TB being a death sentence. And it wasn’t until August 1945 “that the Mayo trial had expanded to as many as thirty patients.” Finally, “In 1947 streptomycin was released to the public”—two years too late for Arline Feynman.

Arline was at the end of the era of deadly bacterial infections; I’m at the end of one era of cancer treatment and the dawn of another, but I’m going to miss surviving because I’m a few years too early, and because the FDA so effectively blocks innovation, even for those of us with terminal illnesses who are happy to trial a new drug when the alternative is certain death. The terminally ill are not incompetent children incapable of understanding risks and giving consent, and the paternalism of the FDA, which intends to protect us from potential pharmaceutical harm, does so by choosing death as the lesser evil for patients like me, instead of giving us the choice to risk theoretical harm in exchange for the possibility of a longer, better life. We should have a meaningful right to try.

Letting patients try isn’t just potentially good for the health of patients, it’s a financially sound decision for everyone: Pharma companies want to sell drugs. Insurance companies could save the extensive costs of ongoing treatments by supporting payment for innovative therapies like cancer vaccines that prevent recurrences. Since 45% of cancer diagnoses are in patients aged 20 – 64 years old, it would benefit the government by having a large chunk of taxpayers able to rejoin the workforce. That’s money in everyone’s pocket. That’s human flourishing, which the FDA is blocking.

There are other substantial, lesser-discussed costs to consider: for example, many trials are only available at a handful of hospital or clinic sites around the country, and finding an appropriate trial, even for patients in large metro areas with research-heavy institutions, means having to travel to the trial. I’ve not only been spending insurance companies’ money (“insurance companies’ money” is another way of saying “almost everyone’s money”); I’ve also had to pay for flights, accommodations, and incidentals to receive any treatment at all via clinical trials. We’d live in a better world if the FDA and drug companies would move to virtual, decentralized clinical trials, in which instead of me expensively shipping myself to a trial site, the drug company ships the drug in question to a local site that passes whatever quality metrics might be necessary, and I get treated locally.

Many potential sites already exist. HonorHealth Research is one, located in the Phoenix area about a fifteen-minute drive from me, and it seems like a reputable place for clinical trials. There’s no reason I can discern for not being able to ship the drug products to HonorHealth, give them specific instructions (“8mg of dexamethasone 1h prior to infusion, 50mg of Benadryl, watch for infusion reactions…”) and then have the doctors and nurses at HonorHealth carry out those instructions. Unfortunately, right now that’s not how the system works, and so I wind up on a lot of airplanes, when a 200ml bag of petosemtamab or PDL1V or whatever could instead be shipped to Phoenix.[5] The carbon footprint of flying me around has to be far greater than that of flying something that is like 1/200^th of my mass. America is not easy on the environment and so much superfluous flying makes things harder, despite my subscription to ClimeWorks’ direct air carbon capture service.[6]

Beyond that, not all care is automatically covered by insurance, and Bess and I have to make hard decisions about what might be worthwhile and what might not be. I’m thinking especially of circulating tumor DNA tests, as well as tumor DNA testing; though DNA tests can identify targetable mutations that could guide me to effective treatments, they are considered “not medically necessary” by insurance companies. Not medically necessary for whom?[7]

I don’t know if there’s a takeaway from this essay, other than that life is hard and many decisions aren’t easy. I also appreciate everyone who has donated to the Go Fund Me my brother set up, and which has allowed me to pursue clinical trials and live far longer than I would’ve otherwise. Bess and my family and my friends appreciate that, too! A future in which personalized vaccines prevent the hardship I’ve experienced, and the death I’m to experience shortly, is also good, and the FDA is bad for holding back medical progress and inflicting so much misery on me. We can and should do better, rather than letting poorly structured bureaucratic mandates harm and kill thousands, if not millions, of people like me annually.

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

[1] Adapted from comments originally left on Astral Codex Ten.

[2] I have not yet been eradicated, but neither has malaria, despite the charges. I’d wager that cancer will eradicate me before humans eradicate malaria, alas. There are malaria vaccines rolling out now, which is a tremendous advance in terms of human flourishing, and yet malaria vaccines wind up not dominating the news, which focuses on picayune status fights among political actors.

[3] I’m still dancing for my bread! Hence this new essay.

[4] Which is one of the many problems with pervasive narcissism.

[5] This is likely the FDA’s hand, because any misstep from an “approved” lab or site or infusion center might mean a multi-million dollar loss, as the data is considered unreliable. There are sites that spend years trying to open a study, but are denied, because of a minor squabble with something in their lab that doesn’t meet mystery criteria. Since most hospital-quality labs across the country are capable of performing the same clinical testing, I find it hard to believe that this is actually a clinical concern. Anything that makes the system slower, worse, and more expensive reeks of FDA regulation.

[6] Despite the present precarity of the biosphere, and the fact that we’re blowing by a 1.5 degree C temperature rise from pre-industrial times, I’d like the future of humanity to be positive. Hardly anyone is remotely serious about making happen, however. Indifference and lassitude are human nature, I infer. I’m not exempt.

[7] “Not medically necessary” is sometimes insurance company shorthand for “It’s more cost effective for you to die than for us to pay for this, even if there is established evidence that it could lead to scientifically validated treatment(s) for you.”

“Woman-to-Woman-to…Huberman:” What journalism looks like from the inside

May 6, 2024 By Jake Seliger in Critics, Culture, ideas, Publishing Tags: Culture, huberman, Media Leave a comment

This is written by a woman (and friend of mine!) who wishes to remain anonymous.

When the article about Andrew Huberman was published in March, I wasn’t surprised, because “Sarah” had contacted me months before, seeking answers from women she says didn’t know about her, though they were having sex with her then-partner, Andrew.

On a Sunday night in February, I received a text from an unknown number—the texter introduced herself as “Sarah,” the woman Andrew shared his life with for the last five years. She shared deeply personal, deleterious, and unsubstantiated details about Andrew cheating on her with four to ten women, spreading rumors about her, and verbally abusing her. She assumed I was one of those hapless women, and she apologized for being the one to tell me. She was cloaking gossip in virtue, though she reassured me that she held no ill will against me and saw me as another victim. All of this happened before ending her opening message to me by asking me, “woman-to-woman,” to bring her comfort and closure by admitting that I was sleeping with Andrew.

I felt a mix of shame, suspicion, confusion, hurt, degradation, empathy, and curiosity. Who was on the other end of this message? Could I trust her, or him, or them? Was this a trap? What sort of nightmare love triangle did Andrew drag me into? “Triangle” is probably not even the right geometric shape. I asked her how she found my contact information. It was hard not to feel solidarity with her, she was kind and spilling her guts about her heartbreak—yet, her approach was unapologetically intrusive and felt manipulative.

Sarah said she found my name in Andrew’s journal one day and instinctively took a photo of the page and later googled me to find my number. When I asked why she’d assume I had an “affair” with Andrew after reading my name in his journal, she replied: “Because of him talking about a long-term relationship…with somebody beautiful. I looked at your picture and you seemed beautiful and private.”

I admit some susceptibility to flattery, and yet it was as if Sarah thought I owed her answers regarding my relationship with Andrew. After I felt confident that this was the woman that Andrew had been seeing for the last few years, I told her that I’d not seen Andrew since before the pandemic. She rapid-fire texted:

“So he cheated on me with you in the early part of our relationship?”
- No, I’ve been in relationships.
“Oh, he reached out, but you didn’t accept.”
- No.
“Were you in a relationship with him? Or was it just more casual?”

I told Sarah I’d not been romantically involved with Andrew since before their relationship started in ~2018.

She declared how relieved she felt and we discussed in limited detail our histories with Andrew. Sarah said nothing about going to the press and I said I wasn’t interested in any sort of PR takedown of him. It’s possible she wasn’t planning to at that moment, but I felt she had an agenda beyond closure. I thought she wanted revenge.

I told her I’d known Andrew for nearly 20 years and was aware that he had some struggles in his relationships—and don’t we all! Sarah said she was also aware of his past. Despite what she said earlier in her texts, Andrew had nothing but very positive things to say about her whenever I spoke to him. He told me all about their struggles with fertility and how much he loved their shared life with her children from a former marriage. While Andrew and I had dated off and on for many years, he did not reach out to me for anything romantic when they were together, indicating to me that he must be quite committed and in love with her. I expressed compassion and empathy for her and with any woman he’s not been truthful to, but I also expressed sympathy for Andrew because I know that, despite himself, he wants a life partner. The whole thing seemed sad to me.

After Sarah realized I saw Andrew as more than what she and these other women experienced (he is more than that), she acknowledged Andrew was generous and kind with her in many ways throughout their relationship. She repeated to me that part of her healing process is knowing the full truth. I am sure she meant this, though I don’t know where she picked up this notion or how she knows it’s true. I think she should read Esther Perel’s books. The sense that she was seeking more than “healing” persisted. The truth came out when the article hit.

I can’t decide what stood out to me more when I first read it: that Sarah cherry-picked whose contact info she provided to Kerry Howley, conveniently excluding me, or that a story which doesn’t amount to much more than a gossip column about an accomplished neuroscientist-turned-podcaster’s propensity for wandering made the front cover of New York Magazine. There’s no abuse of power, no exploitation, no inspirational story of female empowerment—there’s simply an opportunistic journalist writing an unflattering portrayal of Andrew Huberman as a narcissistic, philandering liar. Is someone’s admittedly salacious private life news?

Howley might’ve squandered an opportunity to empower women who may have felt powerless in their relationships or perhaps open a dialogue about the complexity of human relationships gone awry. Something about how these women found themselves involved and, in some cases, in love with a man who seemed unreliable and even deceptive in his personal life while earning a public reputation as thoughtful, insightful, and charming. Instead of complexity, she chose simplicity. Howley didn’t explore the characters or backgrounds of the women in this story. Who are they? What were they seeking? Had she done more diligence of her own, Howley would’ve at least alluded to the background of one of them whose company was investigated for consumer fraud and sued by former employees for wage theft—clear instances of deception and abusing one’s power. The latter of the two was settled out of court and as they say, guilty people don’t settle (looking at you, Michael Jackson).

Instead, Howley wrote about a series of anonymous women who say they thought they were in a monogamous relationship with a man, only to find out it was not monogamous at all. She highlighted how he repeated the same lines over and over again to these women. A lot of the language sounded familiar to me—oh wait, that’s because I’ve known Andew for years. I’m pretty certain my vernacular doesn’t reinvent itself every time I’m in a new relationship, and I’m pretty sure that’s true of most people. The article also includes a number of barely corroborated, seemingly petty things Andrew lied about to demonstrate his supposed lack of moral compass. One that stood out to me was that he lied about living in Piedmont, a wealthy enclave in the East Bay. Andrew’s home, while technically not part of the Piedmont zip code, was a literal stone’s throw away. The article felt like a jilted-lovers’ fantasy come true: an expose detailing every dark and mortifying secret about your cheating ex.

Perhaps there just wasn’t a great story to tell and that’s why it merely reads as gossip. Were Howley and the New York Magazine editor also duped into sleeping with Andrew Huberman under the guise of monogamy and a great future together? Did they do it anyway, for the story?

Look, I get it. I have a pretty deep well of empathy for a woman scorned; I tell friends that I’ll provide transportation across international borders should they seek revenge and need to make a quick getaway. What I really want my friends to know when I make that joke is, if anyone ever betrays their trust, I’ll empathize with their feelings of anger and hurt and won’t judge them for acting out while they process it.

I’ve been inspired by women who seek revenge on their exes, particularly when they empower themselves as women in the process. The difference between empowerment and disempowerment is important. One such example is the article that Justine Musk penned herself about her ex-husband, Elon Musk. Justine didn’t write this anonymously or use it as an opportunity to unearth gossip from all corners of Musk’s life (even though I think he deserved it then and deserves it even more now), weaving together a hit-piece without any substantive commentary on the complexities of life and relationships. Justine bravely laid bare her participation in the slow relinquishing of her own identity and career in support of her talented but painfully insecure partner, who turned around and dumped her anyway. The story inspires because it’s multifaceted, introspective, and offers insight into how someone might find themself in that exact same situation. And perhaps a roadmap to escape it.

The Sarah I communicated with in February sounded capable of writing something more cogent and inspiring. Something revealing, and introspective, while also untangling the complexities of getting involved with someone we can’t fully trust. I think Howley failed her by turning this article into the hack job that it is. I don’t know whether Sarah or these other women found closure or peace of mind by participating. I can’t help but feel like this article could serve as a lesson for Andrew and for them, but one that the author failed to articulate anywhere among its 10,000 words. What stories aren’t being told as this one is? What would someone with a broader, more humane vision of the world than Howley’s have done with the material? If we’re going to talk about lying, why don’t we talk about Sarah’s motives, and what she said when she approached women on Howley’s behalf? Why aren’t we looking into the relationship between Sarah and Howley?

Much of the legacy media has turned into a hit-piece machine. It’s sad, but also common, and yet I still think many people don’t realize how the media sausage gets made. Once a journalist has a point of view, they often act like a prosecutor. We saw what the New York Times did to Astral Codex Ten writer Scott Alexander. Now we have this attack against Huberman. I don’t condone his dating habits, but I also don’t think this amounts to a public story. Ryan Holiday published Trust Me, I’m Lying: Confessions of a Media Manipulator back in 2012. A dozen years later, it remains distressingly relevant. I want someone to investigate Howley and Sarah, and tell us how the article came together. That’s the story that’s most important to the public interest, because so many of the media’s sleazy operations are cloaked in secrecy. I can reveal just a little bit of that story: “journalism” can pretend to be a private story when it’s actually prep for a public social attack.

Many of us have unfortunate periods in our romantic histories, or pathologies we battle in our relationships today. But if you become famous, you become a target for the Howleys and New York Magazines of the world.

I don’t think there is a there there with this story. I think Sarah and Andrew did have real love and a real relationship, and she knows Andrew. She knows about his childhood, about his struggles to get where he is, about his deep desire for a loving family. Regardless of how much Howley attempted to undermine and trivialize it. I’ve had men betray me and I’ve fantasized about their personal or professional demise. But over time I’ve come to see them more fully. They are more than the hurt they caused me, and they were more to me than the hurt they caused me. Someone once told me that the only thing more emotionally damaging than feeling abandoned or betrayed by someone you trust, is abandoning our own sense of truth and morality. I believe that. But, if you’re my friend or a woman in need and your man has cheated on you, you know where to find me if you need a getaway car.

Will things get better? Suicide and the possibility of waiting to find out

January 23, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, personal, suicide 5 Comments

If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

Suicide is a one-way valve: once done, it can’t be undone. I’d known the May 25 surgery that took my tongue would be hard and have a long recovery period, but I didn’t understand what “hard” and “long” truly meant, and during that post-operative June and July, when the level of physical misery was not, for me, compatible with life—not long term—I told Bess about “the question.” But if I delayed, the choice could always be made later. Knowing the option for exit remained allowed me to keep living, or whatever that simulacrum of living was, to see how things played out, despite how bleak life was. Many burdens can be borne for a short time, provided that there’s legitimate hope for a brighter future. Maybe there was. Maybe there wasn’t. I wouldn’t know if I was dead.

Back then I’d look at the man in the mirror, bloated, hideous, covered with stitches and thought, though I knew the answer: who or what is that? I’d expected to lose half my tongue to cancer, but when I awoke from surgery, I discovered the whole thing gone, along with some important nerves in my neck. For more than a month, I wasn’t able to breathe comfortably. Mucus production dominated my life, apparently due in part to the loss of the cancerous nerves. The days I spent in the hospital after the surgery were among the darkest in my life, and all the darker because of a thought: What if it doesn’t get better than this? The question wasn’t rhetorical. I saw the answer whenever I looked into the void.

Though I knew the answer, I didn’t like it. Worse than what I saw in the mirror was what I felt: an inability to be comfortable, in any position, anywhere. Breathing hurt, and I felt like I was drowning all the time. It wasn’t possible to clear sufficient mucus from my airway or nasal passages to breathe. Waterboarding is a form of torture, and, while I hope never to experience it directly, the descriptions I’ve read of it resonate with what I felt after the surgery. I was dependent on machines to keep me relatively alive. One day I hope man and machine can merge in a beautiful symbiosis, but my partial merger with the machine world was not like that—yes, they kept me alive, but I was fighting them, and they were fighting me, rather than us working together towards some greater mechanical whole.

If anything kept me alive, it was Bess. Every moment hurt, but I saw how fiercely she clung to the idea that things might get better. She was so diligent about caring for my wounds, cleaning the surgical sites, and monitoring my progress; it had to be because she expected progress. She might’ve been subconsciously motivated because she’s a doctor and can’t ignore a medical task, or, alternately, she was deluded by love and false hope. But her own optimism helped me understand there was a chance things would get better, however much everything, moment by moment, hurt. Which was good, because things hurt. A lot. I breathed through a trache tube in my throat that was constantly clogging and suffocating me. Pushing bags of liquid food through my PEG tube using a pump was a relentless struggle. I barely had the energy to walk across the room. The level of absolute, continuous exhaustion is hard to convey to anyone who’s not been through something analgaous. With normal exhaustion, sleep is curative. I couldn’t even sleep well because I couldn’t breathe well.

The pain wasn’t solely physical; it was also the pain of trying to understand where I fit into the world and how to live; not just existentially but quite literally how to manage simple day-to-day tasks that were now impossible. When I got out of the hospital, I immediately faced a barrage of fucked-up bureaucracy: the hospital and medical suppliers kept calling me and wouldn’t talk to Bess without my verbal consent, which I couldn’t give, because I couldn’t speak. Insurance wanted to fight. We weren’t sent home with the right food pump. It took two weeks to get said pump. Most adults figure out how to exist in the sometimes-insufferably bureaucratic society we inhabit; I couldn’t do so, because I couldn’t speak, or think, or move. David Brooks just wrote an essay, “Death by a Thousand Papercuts,” that captures a little of what I felt:

[Administrators’] power is similar to what Annie Lowrey of The Atlantic has called the “time tax.” If you’ve ever fought a health care, corporate or university bureaucracy, you quickly realize you don’t have the time for it, so you give up. I don’t know about you, but my health insurer sometimes denies my family coverage for things that seem like obvious necessities, but I let it go unless it’s a major expense. I calculate that my time is more valuable.

My time wasn’t valuable[1] but I lacked the means to pay the time tax. I was already suffering so severely in the physical realm that I didn’t have the wherewithal to fight for the pump and the food and medications. Even now, I’m facing potential mystery bills generated by United Healthcare; the person at the Mayo Clinic who is supposed to interface with the specialty pharmacy says the specialty pharmacy won’t talk to her[2], and, while the specialty pharmacy hasn’t generated any bills directly to me yet, I sense that they’re coming. Maybe it sounds absurd to be talking of bureaucracy in an essay about suicide, but probably it makes sense to anyone whose entire life has ever been at the mercy of one[3]. Bureaucracy can be a form of exhaustion and misery. It eats at your resolve. It’s its own kind of slow death.

During the summer, I couldn’t see a way forward towards a better life, and I knew that if I couldn’t get to a better, more tolerable life, I wouldn’t want to live further. Bess worried horribly about me, though I did promise her that I wouldn’t leave without telling her first. She worked frantically to keep me here, and to make life as good as it could be, given the privations of the surgery and cancer. She did as well as anyone could. But the suffering persisted. I don’t know precisely where the line was between “tolerable” and “intolerable” except that I was on the wrong side immediately after the surgery. Probably each person has to decide for him or herself where the line is. I don’t generally favor suicide—I prefer hope to despair, life to death, success to failure—but I don’t consider it taboo or unthinkable, either. Life and human consciousness are in general good, and, as far as we can tell, rare in the universe. They should be fostered, though not at the expense of all other values and costs.

In the months after the surgery, I felt like I had no slack—no physical slack, no energetic slack, no intellectual slack. I hardly had the ability to do anything or to think anything. Commonplace tasks felt like climbing the Himalayas. And I was besieged by tasks: doctor appointments, wound care, antibiotics, food, managing the healthcare team and system. I didn’t have energy or attention for anything. Life’s pleasures, whether normal or small, weren’t available: sleep, rest, food, coffee, sex, showers. I was technically alive but felt like I shouldn’t be.

There’s a weird tendency for people to view others persisting despite suffering as if they’re watching the vapid inspiration videos infesting social media like so many varmints. They fantasize that suffering serves a purpose. It teaches us…something, beyond itself, I guess. Wisdom, or something. I think that’s true of some kinds of suffering, like completing a project at the limits of one’s abilities, or other activities that generate mental fortitude and knowledge. Other kinds of suffering, like medical suffering, seem more pointless. I’ve learned that medical suffering sucks, but I knew that going in. I don’t think I’m a better or wiser or more enriched person for having been through what I’ve been through; I’ve just been miserable. That kind of adversity isn’t worth the price of adversity.

I could construct a bogus story in which I’ve learned from the suffering of the last year, but I don’t think it’d be true. It’d just be a form of cope. Bess confirms that, for every person she sees who beatifically (and irrationally) convinces themselves that their suffering has a purpose, there are five more who are miserable and mean about the hand they’re dealt. She confirms I’m not miserable or mean,[4] but I am a realist. If I’ve learned anything, it’s what I already knew: technology is good; cancer is bad; using technology to defeat cancer and other forms of human immiseration is good. We should accelerate technological progress in the pursuit of improving human flourishing. In another world, a world with less FDA intransigence and blockage, I’d have gotten Transgene’s TG4050 cancer vaccine after my first surgery, and it would’ve prevented the recurrence that took my tongue. Fortunately, the FDA has been diligently protecting me from being harmed, and it has thus ensured that cancer will kill me. Thank you, FDA.

If suffering has done anything, it’s made me more willing to speak out for the importance of technological acceleration, and for the need to give people the option to take more risks and block fewer technologies. We can’t build AI to improve the human condition soon enough. Forty thousand people a year die in car crashes; if AI plus LIDAR leads to self-driving cars, great. MobileEye and Luminar are leaders in self-driving cars, but the other efforts to build out AI and, eventually, the machine god, shouldn’t be discounted.

I don’t know when I consciously realized that I might be doing well enough to ask myself more questions about how I might live as opposed to when I might choose to die—probably sometime in August or September. Improvements have been slow—so slow. I learned to swallow slurries again. For a long time, every swallow was a struggle. I choked so severely on water in late July or early August that I thought I might die. Bess witnessed it, and pounded on my back to attempt to help me, and said she found that episode terrifying, because the Heimlich maneuver isn’t efficacious against drowning.

As I became somewhat better able to breathe, and the number of medical appointments began to decline, I also planned for another set of privations in the form of chemotherapy. What happened on May 25 is called “salvage surgery.”[5] I guess the surgery salvaged my life, at the expense of my tongue, which had been replaced it with a flap of muscle from my thigh. But the flap felt like an inert, alien thing, that constantly alerted my brainstem to a foreign threat inside my own mouth. It was immobile and insensate and yet I felt it, constantly. Was I what had been salvaged? It sure didn’t feel like it.

Failure to eliminate head and neck cancer in the first go-round is extremely bad, though my surgeon, Dr. Hinni, got clean margins in May. The question became: should I do any chemotherapy in an attempt to eliminate any remaining cancer cells? No one gave us a clear answer, because one doesn’t exist: Bizarrely, no one had comprehensively studied the question. Almost all the oncologists Bess and I consulted with said they either didn’t know the answer, and most said that the choice was really 50/50. It seemed we had to “decide what we wanted,” which seemed like a great way to run a Montessori preschool, but a less great way to decide on life-altering cancer care. Oncologists are strangely loathe to provide real, data-driven recommendations. There’s a lot of misplaced hope and enthusiasm for debilitating therapies, while, at the same time, thinking outside the box seems to be viewed with unearned futility.

I looked at the odds of surviving a second recurrence—essentially zero—and decided to go for chemo. My first chemo infusion was scheduled for July 24, and on July 21 I got CT scans to see whether I could begin performing jaw exercises that might improve my mobility; those scans showed the recurrence and metastases. That horrible surgery had bought a mere two months. Chemo went from “maybe curative” to “palliative, and an attempt to buy time.” I was barely healed enough from surgery when the chemo began, and so the physical improvements were setback by chemo.

Yet even though the chemo was miserable, I’d gotten better enough to have pulled back from the brink. I was getting a little better at swallowing. I was able to breathe without constant, continual pain. The PEG tube that protruded from my stomach was a constant bother, but one that was manageable enough. Progress was just slow. Unbelievably slow. Every day, I pressed forward as best I could. I used the exercise bands. I walked a little farther. I tried to push in as much nutrition as possible. I adjusted medications to help me sleep. Most importantly, I spent time with Bess. The purpose of life is other people. For me, that’s presently instantiated by being with Bess, by being with friends and family, and by writing. The writing is an attempt to help others, especially the people who are facing their own cancers. Oncologists apparently aren’t, as a group, going to do enough to help people who need clinical trials, so I’m stepping into that gap.

There’s a common distinction between surviving and thriving. Many people who survive traumatic or horrifying events never thrive after. Esther Perel has spoken about the difference between Holocaust survivors who managed to thrive after, as her parents seemed to, versus those who didn’t, as two of my grandparents seemed not to.[6] I’ve been trying to thrive, as best as I can discern how, with the aid of Bess, and despite the challenges of the incurable disease that’s killing me, held at bay right now only by the clinical trial petosemtamab.

For now, not exiting was the right decision, thanks to the aid I received and am recreiving from many others around me. I’m trying to lead a generative, positive life with what time I have left, and writing is a key part of that effort. Few people understand how bad the FDA is, or the degree to which the FDA is retarding progress in oncology in particular, and consequently letting cancer patients die. Perhaps there are too few faces to associate with the statistics about cancer deaths, and so I’m attempting to associate a single person with the bureaucratic edifice that is the FDA, killing through its nominal mission to “protect.”

One day, maybe soon, may not, it will be time to enter the one-way portal. The preferred, antiseptic modern term is “death with dignity.” But the people around me and with me keep me alive, and show that we really do live for one another. The physical challenges are still great, but not as severe as they were last summer. I’m able to get up and engage in meaningful activity most days. I don’t want to be a burden—a burden on family, friends, or society, and by my own judgment I think myself not too great a burden for others. That line will likely be crossed in the next year, but it’s not been crossed yet. And the clinical trial I’m participating in—and the one after it, and, if that one is successful enough, the one after it—is generating the data necessary to make effective cancer drugs available to other people. My role is small—I’m not inventing the drug, I’m not manufacturing it, I’m not setting up the trials themselves—but it is a role, and it is one someone has to fulfill. Fulfilling it generates some meaning in my life, and meaning is an essential component of thriving. Maybe there will be other roles for me, before the end.

I’ll probably never be as effective as I was before the cancer, but I’ve been working, every day, at being more effective and less of a burden to the degree that I can achieve either. There’s plenty of physical pain in my life—as I write this, I have cuts on the pads of my fingers that won’t heal, I’m bleeding or barely not bleeding from my toenails, and my lower lip cycles between cracking and bleeding from those cracks. But the pain is bearable enough. I can breathe well enough. I’m able enough to write. So much has been taken, though enough remains for me to remain. I still believe what I wrote in “I know what happens to me after I die, but what about those left behind?”:

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.

Aragorn and by extension Tolkien understood death with dignity. For a lot of the summer, I felt unmanned and witless. Now I’m sufficiently manned and witted to be writing this, to be cooking, and to consider a future I probably won’t get, but I might. I don’t want to be caught off guard by success, like a teen boy whose efforts to get laid work when he thought they never would. The incremental improvements have added up, and suicide is an all-or-nothing proposition. The decision not to die last summer was the right one. The show goes on. Life goes on. For now, I am a part of it.

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

[1] In the monetary sense: my marginal product of labor then was $0/hour. Bess wants me to point out that my time is inherently valuable to me as a human being.

[2] The specialty pharmacy also told her that they won’t talk to us. “They don’t speak directly to customers.” When the bill comes, I guess I’ll just send it back with an explanation that if they won’t interface with me, I won’t interface with them. Something tells me that will change their policy.

[3] Or who has read Kafka.

[4] Some of the nurses on the post-surgery recovery floor told Bess I was nice. I was trying to do unto others as I’d have them do unto me, and I hope I succeeded.

[5] The term for the surgery after the first surgery to remove head and neck cancer, and associated adjuvant treatment like radiation, fails

[6] They died before I was born, so I have no ability to judge for myself.

On not being a radical medicine skeptic, and the dangers of doctor-by-Internet

January 11, 2024 By Jake Seliger in Culture, Essays, Personal Tags: cancer, Culture, Essays, medicine, personal 6 Comments

In part 1 I wrote about the struggles that come with complex healthcare problems, like the cancer that’s killing me, the efforts to treat it, and the numerous ancillary problems those treatments have caused. I lacked meaningful guidance on important topics like clinical trials or how to significantly decrease the incapacitating side effects of chemotherapy. I had to seek out other interventions that would significantly improve my quality of life, like a low-profile mic-key PEG tube. Instead of being guided by experts, I often had to crowd-source recommendations and double-check (and drive) treatment plans, or else so much would have fallen through the cracks. I’d likely be dead. My experiences should help guide others in similar situations, so they can better advocate. But I’m not a radical skeptic and, though I’d like to see improvements in healthcare and other institutions, I also don’t see fantastic alternatives at present levels of technology. If you find this piece worthwhile, consider the Go Fund Me that’s funding ongoing care.

What I’m suggesting isn’t the same as getting your medical degree from Dr. Google

Patients love to tell doctors what to do, and it drives doctors crazy. Online, and sometimes in the legacy media, you might’ve seen quotes from doctors complaining about know-it-all patients who attempt to incorrectly drive treatment. Demanding inadvisable treatment isn’t just bad for the doctor’s sanity; it’s bad for the patient’s health outcomes. Bess, to cite one example who happens to be sitting next to me as I write this, is barraged by ER patients demanding antibiotics for their viral illness or steroids for their chronically sore backs—even though these treatments won’t address the problem and may cause real harm—all because the patient “knows their body,” evidence-based medicine be damned. Many, if not most, people aren’t great at gathering and evaluating evidence, or reading, and even doctors don’t appear to be great at statistical literacy.

I’m sympathetic to doctors’ views regarding patient knowledge or lack thereof, especially when doctors are trying to protect patients from unnecessary medications with real and serious side effects, and yet, at the same time, I continue to be (stupidly, foolishly) surprised at all the things not being done by the doctors who’re supposed to be driving my care. The first time something negative happens can reasonably be a surprise; the eighth time should not. They’re the experts and I’m the amateur, so why am I outperforming them in important ways? If Bess and I don’t drive, there’s no one behind the wheel, and that’s bad. Beyond my individual case, there’s also a larger question: What happens to trust in doctors as a whole when so many individual doctors aren’t providing the guidance or care they should?

Martin Gurri wrote a now-famous and excellent book called The Revolt of the Public and the Crisis of Authority in the New Millennium. It’s about, among other things, the loss of confidence in institutions of all sorts, including doctors and medical institutions. If you’re trying to understand the present better, The Revolt of the Public is a great, essential read. Patients need to listen to their doctors, yes, but for healthcare to benefit patients, doctors also need to listen to their patients. I’m not supposed to be an expert in every aspect of healthcare, and yet, as described in Part I, Bess and I have done and caught a bunch of things that the people who’re supposed to catch and do those things haven’t. In Poor Charlie’s Almanack, Charlie Munger wrote that “If, in your thinking, you rely entirely on others—often through purchase of professional advice—whenever outside a small territory or your own, you will suffer much calamity. And it is not just difficulties in complex coordination that will do you in.”* While it’s true that relying entirely on others isn’t a great idea, we all have to rely on others to some extent, and I’ve had to rely heavily on what doctors, nurses, physicians assistants, and others tell me. It’s hard to know what I don’t know.

Doctors go to school for four years and residency for a minimum of three. So why have I, a writer, had to double check so much? Why have so many of the plans that have kept me alive revolved around suggestions that Bess and I have made to oncologists and other experts—plans and treatments that wouldn’t have otherwise been considered? Bess and I did almost all the work and all the learning about clinical trials to keep me alive. It’s sub-optimal for me to do the double-checking because I don’t know everything the doctors know, or what I don’t know. Bess is an ER doctor and so doesn’t know oncology well. Still, Bess would agree that it only takes one minute for a doctor to ask him or herself: “if I was in my patient’s position, is there anything I can do to simply and easily make their situation better?”

I’m not anti-doctor. This isn’t a screed about how doctors are dumb (they’re not, in the main). Although I’m not writing a screed, I am describing what I’ve faced and experienced in trying to not die, including many of the unflattering parts. After I die, I know Bess will be consumed by crushing existential loneliness, and I want to delay that day as long as possible. Delaying that day as long as possible means that Bess and I are constantly fighting to get the care that doctors haven’t been providing. Bess has been able to keep a close eye on most emergent medical matters, and she’s activated the doctor-network to beg for help from peers in Facebook medical groups. She’s banged down the digital doors of so many oncologists, trying to crowd-source a sense of whether the path we’re on makes sense (we appreciate the help, I want to emphasize: many of you have literally been lifesavers).

We’ve gotten some real medical oncology help, to be sure: a head and neck oncologist at Mayo Rochester named Dr. Kat Price has been hugely helpful in clinical trials, chemotherapy regimen questions, and other matters. Dr. Assuntina Sacco at UCSD understands the clinical trial landscape and is more knowledgeable than we are about what’s out there. Both have, I think, asked themselves what they would want in my situation. But they’ve been the exception, not the rule, which seems crazy to Bess and to me—I guess we live in a crazy upside-down world. By writing about what I’ve seen and experienced, I’m trying to help others, and to warn them of the many challenges Bess and I have faced and, based on experience, are likely to continue to face.

Continue reading →

Global warming is here and it’s everyone’s fault

July 22, 2023 By Jake Seliger in Culture, News Tags: Culture, News Leave a comment

Maybe you’ve seen: “The 15 hottest days, in the world’s hottest month.”

It’s not like we weren’t warned: Nasa scientist James Hansen testified to Congress in 1988 about what was coming. We ignored it. By now, it’s everyone’s fault.

It’s the fault of:

* People who have spent decades voting against nuclear power.

* People who support NEPA. People who have never heard of NEPA.

* NIMBYs who work and vote to keep the vast majority of domiciles car-dependent.

* NIMBYs who make sure we can’t build more housing in dense, green cities like NYC (where I used to live, but moved, due to affordability issues).

* People who vote against bike lanes.

* People who could have picked the smaller vehicles and didn’t.

* People who could have picked up the bikes and didn’t.

* People who could have installed solar and didn’t.

* People who vote against mass transit (“It will never be practical”).

* Me. I only have so much effort to push into resisting the efforts of hundreds of millions if not billions of other people who are enacting the system. I try to resist but it’s hard for one person.

* People who realize that they’d like to live differently but are pushed into that single exurban direction by the legal and regulatory structure of American and, often, Canadian life.

Even the people who’d like to live greener—without a car, without relentless parking lots blighting the landscape, without having to live in single-unit housing—mostly can’t, in the United States. Or if we can, we’re merely moving the next marginal candidate who’d like to live densely into the exurbs of Phoenix, Dallas, Houston, Miami, and so on. Those are the places where it’s legal to build housing, so that’s where most people are going. I’ve moved from New York to Phoenix because I can afford the latter and can (barely) afford the former. Most of Phoenix is impossible without a car, and dangerous on a bike. It’s tragic, and I’d love to see change, but the system is forcing me in a particular direction and it’s incredibly expensive to try resisting it.

It’s the fault of no one, and everyone. There are some green shoots of change happening, albeit slowly, but we needed to get serious about nuclear power and the removal of non-safety zoning restrictions decades ago. We didn’t, and now the price is showing up. We need to get serious today, but we’re not.

Because fault is diffused, most of us, me included, feel there’s nothing substantial we can do—so we do nothing. Years pass. The problems worsen, though we can justify to ourselves that the problems are just headlines. Insurance becomes hard to get. The deniers set up their own alternative universes, where information only confirms and never disconfirms their worldviews. The bullshit asymmetry principle plays out: “The amount of energy needed to refute bullshit is an order of magnitude bigger than that needed to produce it.”

“What if scientists have over-predicted the consequences of global warming?” people ask. The flipside is never considered: “What if they’re underpredicting the consequences?”

The system goes on. Maybe solar, wind, and geothermal get cheap fast enough to partially save us. Maybe direct air capture (DAC) of carbon dioxide proceeds fast enough.

But maybe it doesn’t. And then the crisis will be all of our faults. And no one’s.

A life-changing encounter with a man named Dan

June 29, 2023 By Jake Seliger in Culture, ideas, Personal Tags: Culture, Ideas, Stories 7 Comments

This essay is by my brother, Sam.

In 2009, I had a life-changing encounter with a man named Dan; he was the top salesman at our company and left an indelible mark on my career. Dan was an impressive figure, standing at six feet four with a heroic build, fierce red hair, and striking green eyes. He possessed an air of confidence, always dressed impeccably, never seen with a loosened tie, even during late nights working on proposals. His crisp, white shirt occasionally had its sleeves rolled up, but he always exuded professionalism and ownership. People naturally gravitated towards him, stepping aside to listen to his words. Dan treated everyone with a warm smile and friendliness, be it the company president or the person serving us lunch at Subway. His positive attitude was unparalleled. Whenever asked how he was doing, his unwavering response was, “I have never been better”—and he genuinely meant it.

Then, one day, Dan received devastating news about one of his children, who passed away. He took some time off from work, but, upon his return, he walked into the building with his laptop in hand, his tie tightly knotted, and a radiant smile on his face. As we were close colleagues, I felt concerned and decided to visit his office that morning, closing the door behind me.

“How are you really doing?” I asked sincerely. “Is there anything I can do for you? I mean it, anything, just ask.”

With a grin, Dan replied, “You know, I’ve never been better,” tossing his empty Starbucks cup into a trash can across the room. I stood there in silence, processing his words.

“How?” I finally managed to ask. “How can you maintain such a positive outlook? How can you genuinely claim that you’ve never been better?”

Dan leaned in and spoke softly, capturing my full attention. “Listen carefully,” he began. “You don’t truly know anything about me or my life. You only think you do. Here’s something you must remember, and I won’t mention it again. Your attitude sucks. Frankly, I’m surprised they tolerate it here. Your attitude defines everything. It shapes your life. You think things are bad? Let me tell you, buddy, they could be a lot worse. A lot worse. You’re standing there, upset because a meeting didn’t go your way, dressed in your shirt and cheap tie. Well, go out and start digging sewers and tell me how much that meeting mattered today. And maybe, after digging sewers, you’ll get laid off and find yourself living in one, eating from a dumpster. You don’t know anything. So, listen up. When someone asks how you’re doing, there’s only one answer: ‘I’ve never been better.’ And you live your life as if it’s true because here’s the stone-cold truth — no matter how bad you think things are right now, they can always be worse. So, wake up and change your attitude. Right fucking now.”

With that, he leaned back in his chair, his smile returning as if nothing had happened. I stood there in stunned silence, my shirt drenched in sweat.

“I need more coffee,” Dan happily announced. “Care to join me? It’s on me. Sales always buys the damn coffee!”

We went to Starbucks in his new Mercedes, and while everything seemed unchanged for him, everything had changed for me. I realized I couldn’t fulfill Dan’s request within that job: so I mustered the courage to quit, eventually finding a position at another company. It was a terrifying move, as I had spent my entire professional career at the previous company.

As I was walking into the new office, the receptionist greeted me with a smile and asked how I was doing.

“I’ve never been better,” I replied, sporting a wide grin.

“Well, that’s a fantastic attitude,” she beamed. “You’ll fit right in here if you can maintain that!”

And so it went. I became the most cheerful and upbeat person in the company. Though I became the subject of jokes, I also became a beacon of hope for those feeling downtrodden. Unbeknownst to me, I’d joined a company on the verge of collapse, but, as things worsened, my attitude gained more attention. I rapidly climbed the ranks, despite lacking expertise in the company’s technology. Layoffs hit, one after another, but I survived each round despite being the most junior member. Perplexed, I asked my boss how this was possible.

“Well,” he explained, “During meetings to discuss layoffs, your name consistently comes up. You’re inexperienced and new to the company, making you the logical choice. However, each time, everyone decides you should stay. Your attitude is so positive that everyone wants you here. The president even said he’d prefer one average employee with a great attitude over five brilliant but gloomy experts. Attitude sells. So, you don’t have to worry. You’ll still be here long after I’m gone, until they turn off the lights, if you want to be.”

And so it unfolded. As things deteriorated, my promotions accelerated. Within 18 months, I became the senior member of the sales team. I became the face of the company’s improbable turnaround. And when things reached their breaking point (the turnaround effort was not enough), a friend offered me a job, and that very day, I walked out.

From my experience with Dan and the job after Dan, I developed a list of three priorities necessary for success in the workplace. Having spent considerable time in the business world, let me share these priorities:

Firstly, your boss. Your number one priority is to make your boss look good. This is not a joke.
Secondly, your company. Your top priority is to increase revenue. Following closely is improving profitability. These two priorities should guide your thoughts and actions.
Finally, yourself. Your primary priority is to maintain an unwaveringly positive attitude, self-confidence, and the appearance of success.

The third item is crucial for your career and life. No amount of education or expertise surpasses its significance in most circumstances. An employee with average skills and a positive attitude holds greater value than five brilliant but unpleasant individuals. As pilots say, “your attitude determines your altitude.” Maintaining a positive attitude at all costs ensures your success, as surely as day follows night. Failure is not an option.

Since then, I’ve strived to adhere to these priorities. Where I succeeded, they brought me great achievements. Where I faltered, they resulted in failure and misery. Attitude stands as the foremost determinant of success in life. You must consistently exhibit a positive attitude, no matter the circumstances. Because it’s true—no matter how dire things may seem, they can always be worse. Your attitude will dictate how you navigate through it all.

If I could impart one thing to anyone, regardless of their stage in life, it would be to always display a positive attitude. It holds immeasurable power in the universe.

The death of literary culture

September 30, 2021 By Jake Seliger in Culture, Essays, Reading Tags: Book Culture, Culture, literary culture 1 Comment

At The Complete Review, Michael Orthofer writes of John Updike that

Dead authors do tend to fade fast these days — sometimes to be resurrected after a decent interval has passed, sometimes not –, which would seem to me to explain a lot. As to ‘the American literary mainstream’, I have far too little familiarity with it; indeed, I’d be hard pressed to guess what/who qualifies as that.

Orthofer is responding to a critical essay that says: “Much of American literature is now written in the spurious confessional style of an Alcoholics Anonymous meeting. Readers value authenticity over coherence; they don’t value conventional beauty at all.” I’m never really sure what “authenticity” and its cousin “relatability” mean, and I have an unfortunate suspicion that both reference some lack of imagination in the speaker; still, regarding the former, I find The Authenticity Hoax: How We Get Lost Finding Ourselves persuasive.

But I think Orthofer and the article are subtly pointing towards another idea: literary culture itself is mostly dead. I lived through its final throes—perhaps like someone who, living through the 1950s, saw the end of religious Christianity as a dominant culture, since it was essentially gone by the 1970s—though many claimed its legacy for years after the real thing had passed. What killed literary culture? The Internet is the most obvious, salient answer, and in particular the dominance of social media, which is in effect its own genre—and, frequently, its own genre of fiction. Almost everyone will admit that their own social media profiles attempt to showcase a version of their best or ideal selves, and, thinking of just about everyone I know well, or even slightly well, the gap between who they really are and what they are really doing, and what appears on their social media, is so wide as to qualify as fiction. Determining the “real” self is probably impossible, but determining the fake selves is easier, and the fake is everywhere. Read much social media as fiction and performance and it will make more sense.

Everyone knows this, but admitting it is rarer. Think of all the social media photos of a person ostensibly alone—admiring the beach, reading, sunbathing, whatever—but the photographer is somewhere. A simple example, maybe, but also one without the political baggage of many other possible examples.

Much of what passes for social media discourse makes little or no sense, until one considers that most assertions are assertions of identity, not of factual or true statements, and many social media users are constructing a quasi-fictional universe not unlike the ones novels used to create. “QAnon” might be one easy modern example, albeit one that will probably go stale soon, if it’s not already stale; others will take its place. Many of these fictions are the work of group authors. Numerous assertions around gender and identity might be a left-wing-valenced version of the phenomenon, for readers who want balance, however spurious balance might be. Today, we’ve in some ways moved back to a world like that of the early novel and the early novelists, when “fact” and “fiction” were much more disputed, interwoven territories, and many novels claimed to be “true stories” on their cover pages. The average person has poor epistemic hygiene for most topics not directly tied to income and employment, but the average person has a very keen sense of tribe, belonging, and identity—so views that may be epistemically dubious nonetheless succeed if they promote belonging (consider also The Elephant in the Brain by Robin Hanson and Kevin Simler for a more thorough elaboration on these ideas). Before social media, did most people really belong, or did they silently suffer through the feeling of not belonging? Or was something else at play? I don’t know.

In literary culture terms, the academic and journalistic establishment that once formed the skeletal structure upholding literary culture has collapsed, while journalists and academics have become modern clerics, devoted more to spreading ideology than exploring the human condition, or to art, or to aesthetics. Academia has become more devoted to telling people what to think, than helping people learn how to think, and students are responding to that shift. Experiments like the Sokal Affair and its successors show as much. The cult of “peer review” and “research” fits poorly in the humanities, but they’ve been grafted on, and the graft is poor.

Strangely, many of the essays lamenting the fall of the humanities ignore the changes in the content of the humanities, in both schools and universities. The number of English majors in the U.S. has dropped by about 50% from 2000 to 2021:

Decline of English majors

History and most of other humanities majors obviously show similar declines. Meanwhile, the number of jobs in journalism has approximately halved since the year 2000; academic jobs in the humanities cratered in 2009, from an already low starting point, and have never recovered; even jobs teaching in high school humanities subjects have a much more ideological, rather than humanistic, cast than they did ten years ago. What’s taken the place of reading, if anything? Instagram, Snapchat, TikTok, and, above all, Twitter.

Twitter, in particular, seems to promote negative feedback and fear loops, in ways that media and other institutions haven’t yet figured out how to resist. The jobs that supported the thinkers, critics, starting-out novelists, and others, aren’t there. Whatever might have replaced them, like Twitter, isn’t equivalent. The Internet doesn’t just push most “content” (songs, books, and so forth) towards zero—it also changes what people do, including the people who used to make up what I’m calling literary culture or book culture. The costs of housing also makes teaching a non-viable job for a primary earner in many big cities and suburbs.

What power and vibrancy remains in book culture has shifted towards nonfiction—either narrative nonfiction, like Michael Lewis, or data-driven nonfiction, with too many examples to cite. It still sells (sales aren’t a perfect representation of artistic merit or cultural vibrancy, but they’re not nothing, either). Dead authors go fast today not solely or primarily because of their work, but because the literary culture is going away fast, if it’s not already gone. When John Updike was in his prime, millions of people read him (or they at last bought Couples and could spit out some light book chat about it on command). The number of writers working today who the educated public, broadly conceived of, might know about is small: maybe Elena Ferrante, Michel Houllebecq, Sally Rooney, and perhaps a few others (none of those three are American, I note). I can’t even think of a figure like Elmore Leonard: someone writing linguistically interesting, highly plotted material. Bulk genre writers are still out there, but none who I’m aware of who have any literary ambition.

See some evidence for the decline of literary cultures in the decline of book advances; the Authors Guild, for example, claims that “writing-related earnings by American authors [… fell] to historic lows to a median of $6,080 in 2017, down 42 percent from 2009.” The kinds of freelancing that used to exist has largely disappeared too, or become economically untenable. In If You Absolutely Must by Freddie deBoer, he warns would-be writers that “Book advances have collapsed.” Money isn’t everything but the collapse of already-shaking foundations of book writing is notable, and quantifiable. Publishers appear to survive and profit primarily off very long copyright terms; their “backlist” keeps the lights on. Publishers seem, like journalists and academics, to have become modern-day clerics, at least for the time being, as I noted above.

Consider a more vibrant universe for literary culture, as mentioned in passing here:

From 1960 to 1973, book sales climbed 70 percent, but between 1973 and 1979 they added less than another six percent, and declined in 1980. Meanwhile, global media conglomerates had consolidated the industry. What had been small publishers typically owned by the founders or their heirs were now subsidiaries of CBS, Gulf + Western (later Paramount), MCA, RCA, or Time, Inc. The new owners demanded growth, implementing novel management techniques. Editors had once been the uncontested suzerains of title acquisition. In the 1970s they watched their power wane.

A world in which book sales (and advances) are growing is very different from one of decline. It’s reasonable to respond that writing has rarely been a path to fame or fortune, but it’s also reasonable to note that, even against the literary world of 10 or 20 years ago, the current one is less remunerative and less culturally central. Writers find the path to making any substantial money from their writing harder, and more treacherous. Normal people lament that they can’t get around to finishing a book; they rarely lament that they can’t get around to scrolling Instagram (that’s a descriptive observation of change).

At Scholar’s Stage, Tanner Greer traces the decline of the big book and the big author:

the last poet whose opinion anybody cared about was probably Allen Ginsberg. The last novelist to make waves outside of literary circles was probably Tom Wolfe—and he made his name through nonfiction writing (something similar could be for several of other prominent essayists turned novelists of his generation, like James Baldwin and Joan Didion). Harold Bloom was the last literary critic known outside of his own field; Allan Bloom, the last with the power to cause national controversy. Lin-Manuel Miranda is the lone playwright to achieve celebrity in several decades.

I’d be a bit broader than Greer: someone like Gillian Flynn writing Gone Girl seemed to have some cultural impact, but even books like Gone Girl seem to have stopped appearing. The cultural discussion rarely if ever revolves around books any more. Publishing and the larger culture have stopped producing Stephen Kings. Publishers, oddly to my mind, no longer even seem to want to try producing popular books, preferring instead to pursue insular ideological projects. The most vital energy in writing has been routed to Substack.

I caught the tail end of a humane and human-focused literary culture that’s largely been succeeded by a political and moral-focused culture that I hesitate to call literary, even though it’s taken over what remains of those literary-type institutions. This change has also coincided with a lessening of interest in those institutions: very few people want to be clerics and scolds—many fewer than wonder about the human condition, though the ones who do want to be clerics and scolds form the intolerant minority in many institutions. Shifting from the one to the other seems like a net loss to me, but also a net loss that I’m personally unable to arrest or alter. If I had to pick a date range for this death, it’d probably be 2009 – 2015: the Great Recession eliminates many of the institutional jobs and professions that once existed, along with any plausible path into them for all but the luckiest, and by 2015 social media and scold culture had taken over. Culture is define but easy to feel as you exist within and around it. By 2010, Facebook had become truly mainstream, and everyone’s uncle and grandma weren’t just on the Internet for email and search engines, but for other people and their opinions.

Maybe mainstream literary culture has been replaced by some number of smaller micro-cultures, but those microcultures don’t add up to what used to be a macroculture.

In this essay, I write:

I’ve been annoying friends and acquaintances by asking, “How many books did you read in the last year?” Usually this is greeted with some suspicion or surprise. Why am I being ambushed? Then there are qualifications: “I’ve been really busy,” “It’s hard to find time to read,” “I used to read a lot.” I say I’m not judging them—this is true, I will emphasize—and am looking for an integer answer. Most often it’s something like one or two, followed by declamations of highbrow plans to Read More In the Future. A good and noble sentiment, like starting that diet. Then I ask, “How many of the people you know read more than a book or two a year?” Usually there’s some thinking, and rattling off of one or two names, followed by silence, as the person thinks through the people they know. “So, out of the few hundred people you might know well enough to know, Jack and Mary are the two people you know who read somewhat regularly?” They nod. “And that is why the publishing industry works poorly,” I say. In the before-times, anyone interested in a world greater than what’s available around them and on network TV had to read, most often books, which isn’t true any more and, barring some kind of catastrophe, probably won’t be true again.

Reading back over this I realize it has the tone and quality of a complaint, but it’s meant as a description, and complaining about cultural changes is about as effective as shaking one’s fist at the sky: I’m trying to look at what’s happening, not whine about it. Publishers go woke and see the sales of fiction fall and respond by doubling down, but I’m not in the publishing business and the intra-business signaling that goes on there. One could argue changes noted are for the better. Whining about aggregate behavior and choices has rarely, if ever, changed it. I don’t think literary culture will ever return, any more Latin, epic poetry, classical music, opera, or any number of other once-vital cultural products and systems will.

In some ways, we’re moving backwards, towards a cultural fictional universe with less clearly demarcated lines between “fact” and “fiction” (I remember being surprised, when I started teaching, by undergrads who didn’t know a novel or short stories are fiction, or who called nonfiction works “novels”). Every day, each of us is helping whatever comes next, become. The intertwined forces of technology and culture move primarily in a single direction. The desire for story will remain but the manifestation of that desire aren’t static. Articles like “Leisure reading in the U.S. is at an all-time low” appear routinely. It’s hard to have literary culture among a population that doesn’t read.

Where are the woke on Disney and China?

December 27, 2020 By Jake Seliger in Culture Tags: China, Culture, disney 6 Comments

I have sat through numerous talks and seen numerous social media messages about the evils of imperialism, and in particular western imperialism—so where’s the mass outrage over China today, and the efforts by Disney and Hollywood to court China? China is a literal, real-world imperialist power, today; China has crushed Hong Kong’s independent, imprisoned perhaps a million of its own people based on their race and religion, and invaded and occupied Tibet—and Taiwan may be next. But I never read “imperialist” or “racist” critiques from the usual suspects. Why not?

Search for “imperialism” on Twitter, for example, and you’ll find numerous people denouncing what they take to be “imperialism” or various kinds of imperialisms, but few dealing with China. This bit about Bob Iger’s complicity with Chinese government repression got me thinking about why some targets draw much “woke” ire while others don’t. My working hypothesis is that China seems far away from the United States and too different to understand—even though companies and individuals are regularly attacked for their associations with other Americans, they rarely seem to be for their associations with China. The NBA, to take another example, fervently favors police reform in the United States, but is largely silent on China (to be sure, I don’t agree with all the posturing at the link, but pay attention to the underlying point). My working theory is that the situation between the woke and China is analogous to the way that comparisons to your wife’s sister’s husband’s income can create a lot of jealousy while comparisons to the truly wealthy don’t.

In addition, could it be that Disney’s specialty in child-like stories of simple, Manichaean stories of good versus evil appeal to the same people, or kinds of person, most likely to be attracted to the quasi-religious “woke” mindset? To my knowledge, I’ve not seen these questions asked, and Disney products, like Star Wars movies and TV shows, seem to remain broadly popular, including on the far left. It’s also worth emphasizing that some have spoken about Disney’s action’s; the Twitter thread about Iger links to “Why Disney’s new ‘Mulan’ is a scandal.” But the issue seems to elicit relatively little ire and prominence, compared to many others. Few sustained movements or organizations are devoted to these issues.

What views make someone a pariah, and why? What associations make someone a pariah, and why? What views and associations elicit intense anger, and why? I don’t have full answers to any of these questions but think them worth asking. No one seems to be calling for boycotts of Disney, even though Disney is toadying to an actual imperialist state.

The Story's Story

Tag Archives: Culture

Uncomfortable truth: How close is “positivity culture” to delusion and denial?

Manifest, the Manifold Markets nerd festival

The financial costs of healthcare costs, or, is keeping me alive worth it?

“Woman-to-Woman-to…Huberman:” What journalism looks like from the inside

Will things get better? Suicide and the possibility of waiting to find out

On not being a radical medicine skeptic, and the dangers of doctor-by-Internet

Global warming is here and it’s everyone’s fault

A life-changing encounter with a man named Dan

The death of literary culture

Where are the woke on Disney and China?

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: