* “Cancer expert given experimental treatments for incurable brain tumour describes ‘phenomenal’ results.” Vague article but also indicative of how much faster we can and should be moving in terms of treatment: let people with fatal diagnoses, like mine, try.

* “The Evolution of Tunnel Boring Machines.” A topic important for human flourishing, given how antithetical sitting in traffic is to human flourishing. Interestingly, in American cities, only L.A is serious about building out or expanding a mass-transit system. New York is too dysfunctional to accomplish much.

* Schadenfreude, but: “How Rupert Murdoch Decided to Dump Tucker Carlson.” It’s like watching orcs fighting orcs.

* Exclusionary colleges don’t want the poor, which is obvious, and much of the chaff exclusionary colleges blow into the information ecosystem helps to obscure that idea and focus on other debates.

* On Larry McMurtry. Notice: “McMurtry can seem like a figure from another era. He came of age in a literary economy that allowed for the slow building of a career.”

* “September was the most anomalously hot month ever.” For another take, see “World breaches key 1.5C warming mark for record number of days.” And the collective response is to…shrug, it seems.

* New Zealand proposal to allow medical treatments approved by other countries. The U.S. should do the same: we need faster pharmaceutical research. If we had it, the treatments that might save my life would already be here.

* Andrew Weeks’ ALS diary. Interesting in general but especially for someone facing a deadly disease.

* You’re not going to like what comes after Pax Americana.

* When Hamas tells you who they are, believe them.

* Unmasking Malevolence: On Evil: Inside Human Violence and Cruelty. This was, I believe, published before the Hamas terrorist attack.

* “America Needs to Build More (and Better) Ships.”

* “Radical Energy Abundance.” It’s good, and possible to imagine this in the near future, thanks primarily to solar and batteries.

* Twitter has become bad for finding something to read; maybe Substack notes will be better? Here’s another take on the subject.

* “Houston, we have a solution: Houston was notorious for its sprawl. But it has seen a gentle density revolution since the 1990s. Allowing neighborhoods to opt out of citywide reforms was crucial in its transformation.” People are overwhelmingly moving to the places that build housing, and away from places like NYC and California, which aren’t.

* Related to the above: Tokyo is the big city that’s still affordable. How does Tokyo do it? By building lots of housing and setting zoning laws at the national level, which preempts NIMBYs. We could learn a lot from Tokyo, and we should be doing better.

* More but also sobering things about that California startup city. I still want to move to said city. The optimism in attempting to do something new and interesting is to be commended.

* “Beware the False Prophets of War.” Few of the people predicting defeat in Ukraine have reconciled with what’s happened in the last year and a half.

* Victories for the school-choice movement. Given the venue, it’s not surprising that the author can’t quite confront the “why now?” question.

* “MDMA-assisted therapy for moderate to severe PTSD: a randomized, placebo-controlled phase 3 trial.” It works—really well!

* How to talk about books you haven’t read. I naturally wanted to correct “Baskerville” to “William of Baskerville” or “Brother William,” but the point is not reading The Name of the Rose, right? One time I was with Bess at a drinks thing for prospective residents in Bess’s emergency medicine program. Bess and I were chatting with one of the candidates and he mentioned that he loved short stories. I asked which authors he likes. He was like, “Hemingway.” Great. “What’s your favorite Hemingway story?” He couldn’t name one! I thought I was making conversation, not trying to interrogate him. Eventually I was like, “I mean, ‘Big Two-Hearted River’ is one I admire,” and we moved on. 

Maybe it was just nerves. I don’t know.

* “Whatever the United Auto Worker (UAW) Strike Outcome, Tesla Has Already Won.” (WSJ, $) The unionization in some northern states is insane; maybe it made sense at some point in the distant past, but it doesn’t any more. Meanwhile, the EU is afraid of Chinese car companies—for good reason. The legacy systems are breaking down. I saw a famous Robert Nozick quote on Twitter: “It is illuminating to consider why unions don’t start new businesses, and why workers don’t pool their resources to do so.” They also don’t seem to accept stock options—yet stock is part of the Tesla comp package, which aligns incentives.

* “Elon Musk’s business ties deserve more scrutiny: Across industries, executive after executive has chosen the PRC over free speech.” It’s interesting to see what he’ll criticize the U.S. for, versus what he’ll criticize China for.

Part of being ready to die comes, I think, from psychedelics; I wrote in “How do we evaluate our lives, at the end? What counts, what matters?”: “Bess (my wife) and psychedelics taught me to love, and the importance of love, and yet too soon now I must give everything back.” There’s a longer, yet-to-be-written essay about how psychedelics cause me to see myself as a tiny instantiation of the vast, interconnected human whole, which will comfortingly go on even when I flicker out. Michael Pollan’s book How to Change Your Mind is great and also covers a lot of existential territory. I’m looking for a copy to quote from and can’t find it, because I’ve given so many copies away. Pollan describes the way psychedelics are being used palliatively for end-of-life care, which is, strangely where I now find myself. Fortunately, I have a Kindle copy, and now I can authoritatively say that Pollan writes about how “researchers [have] been giving large doses of psilocybin—the active ingredient in magic mushrooms—to terminal cancer patients as a way to help them deal with their ‘existential distress’ at the approach of death.” Moreover, for many people, “psychedelics [help] to escape the prison of self.” I guess I can say that psychedelics prophylactically assuaged my fear of death, the way Zofran might be taken to prevent nausea.

Even before the present circumstances, though, from psychedelics I learned how not just to know but to deeply feel and internalize that we’re all part of the show for such a short time, and then it’s someone else’s turn, and that is okay. Until science radically expands healthy lives—which will be great, but it’s not clear whether we’re near to or far from that series of breakthroughs—we’re not here for long, and then we yield up the gift, whether willing with grace or unwillingly with fear. But the other part of being ready to die comes from how much living physically sucks for me, much of the time, with a lot of struggles concerning breathing and mucus.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Despite the mucus, I have some victories: I can swallow some food and have gotten steadily better at swallowing. Maybe a month ago, my friend and speech pathologist (in that order) Jessica Gregor helped teach me to swallow again. Swallowing without a tongue is tricky. Do it wrong and whatever you swallow goes into your lungs, causing coughing and possibly worse. But when someone without a tongue, who hasn’t swallowed for two months, learns how to swallow again, the moment of swallowing includes a sense that something is going into the lungs, even if nothing is.

There’s a trick to swallowing after your tongue has been taken: you have to tilt your head back, initiate the swallow, swallow strongly and deliberately without hesitation, and then do a throat-clearing sound and motion. That throat-clearing sound and motion forces air up and out of the lungs, closing the epiglottis in a move called a “glottal stop,” which effectively closes off the airway and makes the esophagus the only option for food to travel through. If there’s any material thing in the way, like recently swallowed food slurry, then the air will also help that substance be routed into the stomach, not the lungs.

With Jessica, I swallowed some ice cream slurry: the Van Leeuwen’s honeycomb flavor. We melted it and blended it with some extra milk, to thin it. And, although I was intensely skeptical that this would result in a meaningful sensory experience, there are taste buds at the back of the throat and esophagus. So I could taste ice cream. Since that night I’ve tried lots of things. Anything acidic, like lentil-soup slurry with too much lemon, doesn’t work well yet. Anything salty, same problem. But savory foods work and so do sweet ones. There’s a fun bakery and wine shop in Tempe called Tracy Dempsey Originals that we’ve been going to. Tracy Dempsey makes spectacular ice cream flavors—particularly her cardamom with fig jam. It turns out I can eat things like cookies and brownies if they’re blended with milk or coffee.

Rough, crumbly, and dry things aren’t any good, but anything that can be made into a smooth, pretty consistent slurry, I should be able to eat. Suddenly I’m talking with Bess about stopping by FnB (our favorite restaurant in Arizona, and conveniently down the street from us) to order food and blend it. We tried that too soon—I wasn’t ready yet—but will try again. That is the human struggle: to fail, to learn, and to try again. The universe is vast, cold, and indifferent, and it wants to eat you. But I’d like to eat too. And being given the chance to do so again, when I thought I would go the rest of my life without flavor, is no small thing.

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

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

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

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

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

It’s hard and maybe impossible to have a rich or full life without understanding other people, and, being at the end of my life, I’m thinking about what I missed. “Understanding other people” is one thing I missed, in part because “understanding other people” is really made up of many different skills. But I came to understand that a big part of understanding other people—one that I was bad at for a long time—is noticing them. “Noticing” sounds simple, right? And yet notice how bad a fair number of people are at it. I’m not the first to notice how important noticing is; Noam Dworman, who owns the Comedy Cellar, said:

People pick up on very slight cues in an instinctual level — kind of analogous to pheromones, I guess — that they can’t account for. They don’t know they’re doing it. It probably affects who seems like a likable person, unlikable, who you trust. There’s a million different ways these things present themselves, but it’s real. It’s very real. I would say some people are oblivious to these clues, and they probably suffer for that during their lives.

That resonates with me because I was very bad, for a very long time, at picking up those slight cues on an instinctual level—probably because I come from a family consisting of people who range from “terrible at picking them up” to “apparently unable to, like prosopagnosia for social life.” I’m not sure there’s a great way to describe briefly how to pick up slight cues on an instinctual level—if there were, it wouldn’t be hard—but I learned later than most how to do it. Recognition of a problem helps resolve it, and it took me until I was in my twenties to even recognize the problem, so I was behind in both seeing the problem and in fixing it.

No one is perfect, but as with anything human, some people are better at recognizing instinctual social cues than others. Standup comedians, if Dworman is to be believed, are or become better than most. Combined with other social defects like an inferiority complex and too little time simply being around other people, not picking up cues led me to a lot of unhappiness, and, when I was younger, I couldn’t even diagnose the source of the unhappiness, let alone fix it.

Now I see the errors clearly, and, where I am, it’s also easier to speak to mistakes; maybe it’s easier to recognize those mistakes, too, or the ego drops some of its daily defenses because there’s no long-term internal or external reputation to protect. The existential slap hits and then how much more is there to conceal? What is the point of concealing mistakes and whatever one’s truest feelings may be at this point? You want the people who mean something to know how much they mean, before the end.

In “How do we evaluate our lives, at the end? What counts, what matters?”, I speak implicitly about mistakes when I say that “What really matters, sustainably, over time? Other people, and your relationships with other people.” A lot of us, including me, forget this or never learn it. Narcissism is one way of never learning the lesson about other people. There are others, some pathological but most likely not. Most are everyday misses, from inattention or ignorance or ego or busy-ness or the thousand other things composing everyday life. I’m also not the only person to have noticed that normal conversations can (and should) be made better.

Being too open to other people is probably another form of mistake: life is about other people, but there’s got to be a balance. It’s poisonous to give away too much value, but it’s also poisonous to be too miserly and closed off. Being closed off was my fault when younger; it was like I wanted to connect but lacked the interface to do so. It took a long time to build that interface, and not having it earlier on was one of my mistakes. One of the things I found most helpful in building that interface was simple experiment and effort: try, see what works, and if something works do more of it, and if something doesn’t try less. Stated that way it seems obvious, but I didn’t have good models for those basics. There’s a recognizable flow to normal conversation that some people don’t get. They monologue or fade. They never quite get the flow. It took me a long time to get the flow and to better empathize with and model other people.

I think the average person is too closed off, or open in the wrong way, and maybe doesn’t realize it: the closed off are frequently protecting themselves at the cost of vulnerability, and all it takes it a few minutes scrolling on social media to see that having full-access to a person’s every thought and feeling also doesn’t translate into real intimacy. Social media is so often anti-social. And a significant minority of people, like some of my family, either don’t realize that social skills can be taught, learned, and practiced, or realize that but don’t do anything with it. Knowing something but doing nothing in response to it isn’t so different from not knowing it.

My family has trouble with eye contact, even though “Eye contact marks the rise and fall of shared attention in conversation.” And “Eye contact may be a key mechanism for enabling the coordination of shared and independent modes of thought, allowing conversation to both cohere and evolve.” The authors find that “eye contact signals when shared attention is high.” If you don’t make consistent eye contact with someone when you’re facing that person, you’re telling them that you’re not paying attention to them, and they shouldn’t pay attention to you. Some people never learn this and thus never think to teach their kids or younger relatives to make eye contact. And then the lack of eye contact reduces coordination and friendship. Miss one key skill and the tower of social skills comes tumbling down, or is never built in the first place. “When we’re not routinely socializing, we feel that something is amiss.” When we don’t even know how to socialize effectively, because we’ve not been taught it and not observed good examples of it, we also feel that something is amiss. And that’s what I felt for a lot of my life, without being able to understand what I was missing.

Reading is the main thing that helped me undo many early problems and pathologies. I find the people who don’t read somewhat astounding. Some of them have good, socially functional families and so maybe need less book-based modeling, but there is so much to know about the world, and reading is the widest funnel—the widest aperture—we have for taking that in. Until Neuralink is ready, we have the word. This is supposed to be an essay about mistakes, but amidst many life errors, I was also inadvertently doing some things right, and inchoately searching for answers without being able to rightly articulate the questions.

I did a lot of learning via reading (and a lot of escapism via reading), but I don’t think most people learn what they’re missing through books; they learn other ways. Dworman, for example, says that standup comedians are “smarter than most people. They’re still less easy to offend. They’re still much better company. They’re still much better conversations, much less boring small talk.” Very little small talk is fine but why not skip to the big talk? Somewhere I figured that out and have tried to adopt it, and to ask the invasive questions that do a good job of repelling the people I want to repel and attracting the people I want to attract. I want to get out of the exurbs of chat and into the dense core of cities, where the action is.

For that reason, I recently proclaimed a moratorium on banality for any visitors. Now is the time—and there won’t be much more— for me and the people I love to say the things we need to say to each other, while we still can. There isn’t time to discuss the weather, or look at that cute dog photo, or wax poetic on the lack of flavorful tomatoes at the grocery store. Bypassing the warm-up of introductory chit-chat can be uncomfortable, particularly for people not used to expressing whatever they really feel, but goodbyes are inherently uncomfortable. I’ve said to friends that this is my first time dying, so I don’t know exactly what to do. Neither do they. Some have no practice saying anything real or true. But it’s better to wade into uncertainty together, and connect meaningfully, even when it’s hard. Big talk is hard. Worthwhile things often are. To avoid it, means choosing separation over discomfort. Some people want to be on their huge lots separate from everyone else, I guess, but loneliness is a common cost to that, and we’re seeing the rise of the lonely. Maybe we should get out into the world, in all senses, more.

Comedians only like to hang out with comedians, and they die a thousand deaths when they have to go to a dinner with people who are not comedians. They really don’t like it, because they cut out all the nonsense.

That’s what dying tells us, too: cut the nonsense and find the sense that matters. It’s not everything. I’m still doing some things that might be trivial in some sense, like reading. But reading is core to who I am, as an infovore and information processor; not being able to read or think after the major May 25th surgery was debilitating and even humiliating to me. I couldn’t be the person who I am, and who I am supposed to be. The voice in my head shut off. I felt like the proverbial vegetable. The eventual return of the voice in my head made me feel more alive again, even when I couldn’t speak and could barely move. There was a way forward. To me, reading is one of the essences of it, if it’s done well. If I have interesting things to say—things comedians might like to hear—I have them to say because I read a lot.

For much of my life, I didn’t get the instinctual social cues that underpin social life, and it took me a long time to recognize that; but I wonder too, what mistakes am I making now, that I won’t recognize for another 10 – 20 years? Which is to say, ever? What am I not noticing? What am I not noticing that I’m not noticing? Alas, I won’t live long enough to know. That’s one of my burdens, for now, until the burden is unfairly and prematurely taken from me.

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

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

Alex Tabarrok writes about how “when the FDA fails to approve a good drug, people die but the bodies are buried in an invisible graveyard.” I’d like to make that graveyard a little bit more visible because I’m going to be buried in it, in a few weeks or months. A squamous cell carcinoma tumor appeared on my tongue last September; the surgery for it occurred in October, followed by radiation in December – January, but the tumor reappeared at the base of my tongue in April. A massive surgery on May 25 appeared to produce “clean margins” (that is, no tumor cells remained where the surgeon operated), albeit at huge cost: I have no tongue any more, just a “flap” of muscle where it used to be, and no ability to swallow solid foods ever again. Monday I’m starting chemotherapy, but that’s almost certainly going to fail, because a CT scan shows four to six new gross tumors, four in my neck and two, possibly, in my lungs.

So what might help me? MRNA tumor vaccines. Head and neck squamous cell carcinomas (HNSCC) are notoriously treatment resistant, and mRNA vaccines have shown huge promise. Why aren’t they happening faster? Because the FDA is slow. There are some trials underway (here is one from Moderna; here is another), and, although I’m trying to enroll, I may be too late, since my cancer moves so aggressively. The FDA was loathe to approve initial mRNA human trials, even when those trials would have been full of people like me: those who are facing death sentences anyway.

Here is one story, from “Why the FDA Has an Incentive to Delay the Introduction of New Drugs:”

In the early 1980s, when I headed the team at the FDA that was reviewing the NDA for recombinant human insulin, . . . we were ready to recommend approval a mere four months after the application was submitted (at a time when the average time for NDA review was more than two and a half years). With quintessential bureaucratic reasoning, my supervisor refused to sign off on the approval—even though he agreed that the data provided compelling evidence of the drug’s safety and effectiveness. “If anything goes wrong,” he argued, “think how bad it will look that we approved the drug so quickly.” (41)

The problem is that delaying mRNA cancer vaccines kills people like me.

We need to have a much stronger “right to try” presumption: “When Dying Patients Want Unproven Drugs,” we should let those patients try. I have weeks to months left; let’s try whatever there is to try, and advance medicine along the way. The “right to try” is part of fundamental freedom—and this is particularly true for palliative-stage patients without a route to a cure anyway. They are risking essentially nothing.

When I am dead and buried at least those who I love and who love me will know the FDA protected me and millions of others like me from ourselves. Thanks, FDA. But the dead do not vote and do not agitate for change, so the system is likely to grind on.

In computer science there is a convention in which one’s first program prints “Hello, world.” Now it is my turn to write “Goodbye, world.” I’m crying as I write this and am sorry to have to go so soon. I have to give back the gift, though with great sadness.

Here is more about the FDA being slow and bureaucratic.

EDIT: Thank you for all the comments and emails. Many of you have asked what you can do to help, and one possible answer is to consider the Go Fund Me that’s funding ongoing care. Apart from that, I’m being treated at the Mayo Clinic Phoenix, and they have a system set up for donations to support clinical trials, so maybe that is another answer; I hope that, in the future, others won’t have to go through what I’m going through.

You may like some of the other essays I’ve written, like “I know what happens to me after I die, but what about those left behind?“, or that Bess has written, like “How much suffering is too much?”