Monthly Archives: July 2023

What it’s like to be married to a dying man

July 24, 2023 By in Personal Tags: , 5 Comments

My wife, Bess, wrote this. For more context, see “I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach.”

Jake is sitting on the couch beside me when he asks, “What’s it like being married to a dying man?” At first, I think I’ll be able to answer easily. I’ve been answering it implicitly for the last seven months, although I didn’t really know he was going to die, soon, until Friday, July 21—three days ago. I’ve been keeping a journal, so I’ve had a place to record the difficult, confusing, and sometimes banal details, like the pitch of the feeding tube beep, the smell of the hospital rooms, the myriad of administrative frustrations. But when Jake asks me what it’s like being married to a man who won’t be here in six months, for his 40th birthday, I’m speechless. I open and close my mouth a few times, because “what’s it like?” isn’t just about loss, although it partially concerns that, and it isn’t about regret, although that’s part of it too—and many other intrusive thoughts find their way unbidden into my stream of consciousness.

“What it’s like” is: it’s like gaining enormous, terrifying clarity. The moment when you realize the right path, the yes or no answer, the end of the debate. Clarity might sound great— don’t we all want clarity? But clarity is cruel, too. We’re fond of illusions, and we’re fond of fictions, which are themselves a sort of illusion. We lie to ourselves about how attractive, capable, intelligent we are. Staring into the face of what matters means reconciling with all the time you spent focusing on what didn’t. And it turns out, that was a lot of time. Why was I watching TV? Browsing Instagram? Holding my phone instead of a person? Fighting the silly fights? Prosecuting pointless arguments? Clarity shows that love matters, as does recognizing love, so that you can nurture it and appreciate it. Romantic love matters, but also friendship love. And yet so many of our daily behaviors and practices are antithetical to these clear, high-level principles.

With clarity came the realization that I’d done a lot wrong—time spent, for example, not recognizing love because I was nursing my own wounds and chasing some kind of made-up ideal, would be the great regret of my life, if I chose to carry it.

I’m an ER doctor, so I’m used to delivering existentially bad news, but no one I’ve given a life-threatening diagnosis to has turned to me and said: “I wish I’d held onto my grudges. Maybe one will come visit me in the hospital.” I’ve seen a lot of people die, or learn how close they are to death. The things they say and regret tend to be similar: not being kinder or more loving, not mending broken friendships and family ties, spending so much time at work (where I am, when they tell me these things). No one says: “Doc, I should’ve spent more time pursuing petty grievances.”

Clarity removes the opaqueness that leads to misunderstandings. How do we ever know another person? How can we? One woman in a Facebook group reported that, after a five-year cancer bout, her husband was dying and she’d never really loved him and he didn’t know (she didn’t think he knew).  What do you do with that? What was her life like? How did it take her so long to reach that conclusion?

My perspective is the opposite of that woman on Facebook: I really really love Jake, and now he’s being taken from me. For 15 years he’s been the greater part of my world. I used to think we couldn’t know another person. But in the last few days, I realized that much of what I have come to believe about both Jake and myself are true. We are human. So we’re petty and small and easily irritated. We too often resemble gerbils or hamsters in too small or too befouled a cage. We too often choose the wheel instead of the larger universe.

But we are also capable of profound intimacy and love and awe at another person. And I realize that, when I look at the measure of our almost 15 years together, it’s the angels of our better nature that’ve won. It’s a gift to sit with your regrets, and realize that they are not important. You can put them down. The future I’m walking into will be heavy enough without the extra baggage. And anyway, I don’t believe in checking bags.

Clarity after someone dies isn’t, I think, all that uncommon. Innumerable TV shows and novels explore what people do when faced with an unexpected loss that causes them to take stock, usually as it applies to their own life moving forward. Posthumous clarity focused only on yourself is like holding a bag you can never truly unpack, and the person motivating your change is gone, and only half the contents really belong to you. It’s a story with only one real hero, the person left behind.

But clarity when someone is still alive, when you have the gift of some time, is the most difficulty and incredible gift I have ever received. You’re not looking at yourself. You’re looking into the eyes of the other person, and seeing them, as well as yourself. And if you’re really lucky, you find that there isn’t much of a difference anymore.

So when Jake says to me “I don’t want to leave you,” I tell him, “You can never leave me, because I have parts of you that I will never give up, and that is what fills the spaces left by the parts of me you have taken.”

I don’t want those parts back, because they don’t belong to me anyway. Those, he takes.

I’m not the hero of my own story. He is. So are my parents, my friends, and the people who are going to make sure that I am carried forward into a future I cannot actually imagine and don’t yet know how to navigate.  It’s not about me, it’s about the network I’m embedded in. Trying to look into that future feels like looking into a haboob—a dust storm that we get here in Arizona, that turns everything from earth to sky into one solid, brown, inviolable wall. I don’t know how to find a path through that storm in a world where Jake isn’t here. Mostly because I can’t find my way out of a paper bag, having no sense of direction or geography, and still rely on Jake to guide me when we walk to the same corner drug store we have been going to for the last three years.

He is still sitting next to me while I type this, typing on his own computer, and we are reading over each others’ shoulders the way we have done for the last 15 years. The present is hard, but the path is clear: wake up, spend time with Jake, sleep, repeat. Past that? In the future? Who knows. 

Being married to a dying man inevitably, cruelly, means that one day soon he will be dead. I don’t really believe it, but he won’t be here beside me to edit another essay and run ideas by, go on walks at night and try to catch the lizards that hang out on the stucco walls of our apartment building, read to me before bed, pet my head when I’m anxious, and smack me on the ass when I’m climbing stairs in front of him, and yet, somehow, impossibly, I’ll still be here. Jake won’t be. The world will keep moving whether or not I feel like screaming for everything to stop. When that time comes, I will have help. My friends, my family, my network, my people: I’ve learned to quit being stubbornly independent and let people help me. But mostly, I will look inside myself, and find Jake still there, and once again he will help guide me to find my way.

If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care. We’ve also written a number of other essays, including “Turning two lives into one, or, things that worry me about Bess, after I’m gone” and “Attachment is suffering, attachment is love.”

How do we evaluate our lives, at the end? What counts, what matters?

July 23, 2023 By in Personal, Philosophy Tags: , 7 Comments

One estimate finds that about 117 billion anatomically modern humans have ever been born; I don’t know how accurate the “117 billion” number really is, but it seems reasonable enough, and about 8 billion people live now; in other words, around 7% of the humans who have ever lived are living now. I’ve had the privilege to be one. At current levels of technology, however, the gift must be given back, sooner or later, willingly or unwillingly, and sadly it seems that I will be made to give it back before my time. I have learned much, experienced much, made many mistakes, enjoyed my triumphs, suffered my defeats, and, most vitally, experienced love.* So many people live who never get that last one, and I have been lucky enough to. The cliche goes: “Don’t be sad because it’s over; be happy that it happened.” That is what I’m trying to do, at some moments more successfully than others. I try to focus on those ways I am so lucky and blessed, but I am often failing. Bess (my wife) and psychedelics taught me to love, and the importance of love, and yet too soon now I must give everything back. Too soon, but, barring that miracle, there is no choice.

What really matters, sustainably, over time?** Other people, and your relationships with other people. That’s it. That’s the non-secret secret. As the end approaches, you’re not going to care about your achievements or brilliance or power or lack thereof; you’re going to care about the people around you, and how you affected them, and how they affected you. That’s what will matter. I’m not saying you shouldn’t learn economics or calculus or programming or landlording, but all of those things, done optimally, will also bring you in touch with other people who are trying to hone and develop their skills in those domains. It’s not just the achievements, though the achievements matter, but the people collected and improved in the course of mastering a domain.

I’ve spent my life trying to learn to develop the skills necessary to connect with other people, which were, shall we say, not strong elements of my parents’ personalities. I’ve heard a cliché that goes something like: “What the rich know, the rest of us pay for learning with our youth.” I can’t find the true wording or source right now. It’s supposed to be about money, manners, and refinement, and so on, but the more generalizable version of it is more like: “The important life skills you lack growing up, you’ll need to learn later, or suffer without them.” So I had to learn how to relate to other people synthetically, on my own, and suffered greatly for it. Even something as seemingly simple as “maintain eye contact” or “search for common ground.” Since the inability to relate to and connect with other people was one of my great deficits, probably I overemphasize it now, like many people who have overcome challenge x and now relentlessly over-apply challenge x to everyone else.

There are a lot of things I wish I’d done differently, but it’s obviously too late now, when there are weeks or months left. But there’s also little to hide, or be ashamed of at the end. I did the things I did and made the friends I made and spent longer having fun in the city than was wise, letting the the time pass instead of focusing on having a family. So many parties, such high rent, so little time: I am a creature shaped by my times. Studied the easy thing instead of the valuable thing in school, too many student loans, foolishly believed the “you’re learning how to learn!” line (Andy Matuschak is 100x better on learning how to learn than most humanities undergrad majors, or things like shudder law school).

That is life, however. Beautiful and cruel. The two are inextricable. I made many mistakes and paid for them. The best thing I did was meet Bess, who is just the right person for me, to the point that people have said things to us like: “You two are really well-suited for each other” (and not meant it as a compliment). The truest mistakes are of the “not been as generous as I should have” or “decided to let those projects go” variety. The things undone and that will now never be done. But I feel lucky, at the end, to have heard from many people who say they love me and mean it, and who I can say that I love and mean it. When I hear that, I know the positives of my life outweigh the negatives.

* Bess edited this and wrote in a comment: “No matter what happens to me, loving and being loved by you has been the crowning experience of my life. I will think about our happy times when my own time comes. You have given me the greatest gift and we are so lucky, even now.”

** That’s essentially another form of the question: “What is the purpose of life?” The answer can’t be imposed from the outside, but I think its true shape takes the same form for most people.

I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach

July 22, 2023 By in Books 86 Comments

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?”

Jake Seliger, possible figurehead for the invisible graveyard of men and women killed by the FDA's slowness
The author on July 22, 2023, when he is, or was, still alive.

Links: Some cancer things, but also some other things

July 22, 2023 By in Links Tags: Leave a comment

* “Slow, Costly Clinical Trials Drag Down Biomedical Breakthroughs.” This is particularly relevant to me right now because the breakthroughs I need to survive are on the horizon but not here yet.

* On the absurd cancer drug shortage, and the fragile supply chains enabling it.

* How Woke Led to Cultural Decadence. Maybe. But trends bring counter-trends too, right?

* Heat pumps are important.

* What It Will Take to Deter China in the Taiwan Strait.

* Is a Revolution in Cancer Treatment Within Reach? First 80% of the article is great, and the last 20% is terrible.

* “Castration, gang-rape, forced nudity: How Russia’s soldiers terrorise Ukraine with sexual violence.” The level of ignorance and folly that comes from the “Why are we support Ukraine?” crowd is borderline unbelievable, but then one remembers that they’re suffering from partisanship brain.

* Interview with China specialist Dan Wang.

* The Princess Bride at 50. The book is more than a little curious, and an artifact of its time.

* Suddenly, it looks like we’re in a golden age for medicine.

* The year I tried to teach myself math.

* “From the Hoover Dam to the Second Avenue subway, America builds slower.” And that is bad. Speed is good.

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

July 22, 2023 By in Culture, News Tags: , 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.

Links: Debt of many kinds, if you are properly considering many of these stories

July 16, 2023 By in Links Tags: Leave a comment

* “US public debt is projected to reach 181% of American economic activity in 30 years.” As with climate change, no one, or at least not the median voter, seems to care about this, which I find strange.

* California strip malls were upzoned last Saturday. A small step in the right direction.

* 2023 geothermal update. Generally good news.

* Unfuckable Hate Nerds: Yes, young men are losers. They deserve sympathy, not contempt.” A topic not much considered in this way.

* Geeks, mops and sociopaths: the death of subcultures.

* “Tony Soprano and the Jungian Death Mother.”

* “The Hypocrisy of Mandatory Diversity Statements: Demanding that everyone embrace the same values will inevitably narrow the pool of applicants who work and get hired in higher education.”

* “The mystery of microbes that live inside tumours.”

* “Earth hit an unofficial record high temperature this week – and stayed there.” Have you subscribed to ClimeWorks yet, or another carbon-removal company like Project Vesta? If not, maybe it’s time. Maybe it’s past time.

* Dan Ariely is bad, it seems.

* How much transparency in government is good? Maybe less than is commonly assumed, right now.

* How to blow up a timeline.

* “Americans’ Confidence in Higher Education Down Sharply.” I saw people on Twitter observing that making higher-ed an avowedly partisan project may then generate typical partisan splits about its value.