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

I keep thinking about what happens to my wife, Bess, after I die; there’s a recurrent image in my mind, about what happens to her after I’m gone, that I can’t seem to shake. Bess once started a story this way:

I know what happens after you die.
I take your family into a quiet room, with Kleenex, and then I say the word “dead.” Not “expired” (because you are a person, not milk), and not “passed on,” because families always want to believe that just means I transferred you to another hospital.
Dead.
I have to say it.
That’s basically all they taught us about how to deliver bad news in medical school. A one-hour lecture.
When you train to become a doctor, they don’t really teach you about death. They tell you how to prevent it, how to fight it, how to say it—but not how to face it.

She’s an ER doctor, so she’s delivered a lot of bad news to a lot of families—her line of work delivers bad news like OB-GYNs deliver babies. She tells families about death, and sometimes coroners, but she doesn’t go home with the family. She doesn’t think deeply about what that dead person’s life meant, because she can’t, and it’s not her job to. She doesn’t go through that person’s things, chucking or donating almost everything that someone used to construct and execute a life. We spend so much time buying, storing, corralling, searching, sorting, and thinking about stuff, and then we perish and what happens?

I mean that in a literal way: I die from that squamous cell carcinoma in my neck and lungs, and then what? What happens to Bess? In the short term there is a lot of crying. Friends and family are, I hope, there to comfort her. Probably I’ve been helped to the other side by hospice, or, alternately, the pain has gotten bad enough that I’ve chosen to end things. I hope, too, that we’ve said everything there is to say between us, because Bess and I have a deal, a rule, an agreement: to leave nothing unsaid. Whatever it is we want to say, we say. This may not be a common way to face death. Bess is in a bunch of doctor-related Facebook groups, including some about relationships and some about terminal illness, she reports that a lot of couples don’t seem to have relationships in which they can say what they most deeply feel and believe. Instead, they seem not to like each other much, or to focus on quotidian aspects of their lives up to the very end. How must that feel to the person left behind?

There must be a sense of unfinished business, of things never unlocked, of it being suddenly and permanently too late to get out whatever a person most truly feels and thinks. A lot of The Presentation of Self in Everyday Life is, justifiably and rightly, about damping and tamping down feelings and one’s deepest convictions, in the pursuit of getting along, paying the bills, advancing science, and so on. Adults can’t run around constantly feeling big feelings, except maybe for the occasional manic artist or lunatic writer. We need to get stuff done. But there are times, like when we’re dying, or marrying, or watching birth, or giving birth, or taking MDMA with someone we love, to step back, feel things, and express what’s there.

To be clear, Bess and I are working hard to delay the moment of death—it looks like Bess has helped find me the optimal clinical trial—but the odds of lasting more than a year, if that, border on “miraculous.” I don’t want to be delusionally optimistic, inanely pretending that things are not as they are. I do want to cultivate the optimism and perspective described by Dan in this story, but I also want to prepare, as best I can, myself and Bess and everyone else around me, for what’s to come. And the speaking about what is to happen is part of that.

I don’t know precisely how the end will come, and oncologists are deliberately quiet and vague about the specifics. They say it’s different for everyone, which is probably just true enough for them to justify to themselves the saying of it, and the evading of the question’s heart. Internet searches have filled that void, although, unless you have specific need to know, I recommend against learning what death by head and neck cancer is like for the person dying.

At some point, the suffering may be too much, and then I hope to exit by my own hand, gracefully, not having been wholly unmanned by disease. “Unmanned:” it’s an old-fashioned word, and one that appears in the appendices of The Lord of the Rings, when it is time for Aragorn to department the world. His wife Arwen pleads with Aragorn “to stay yet for a while” because she “was not yet weary of her days.” Aragorn asks her if she would have him “wait until I wither and fall from my high seat unmanned and witless.” I didn’t imagine that I might face the same question so soon, and yet it’s here, before me, and I hope to depart before the pain robs me of my mind and leaves me witless and suffering. Aragorn says that “I speak no comfort to you, for there is no comfort for such pain within the circles of the world.” And that I fear is true of Bess, too, that there will be no true comfort for her pain. Her parents will help her, our friends will help her, she will not be alone—and yet the pain at the moment of my own departure will remain.

Then what happens? What happens after I depart, whether at home or hospital or some other place? When I’m gone, I don’t see any point of being buried in a random cemetery, but dealing with the corporeal matter is probably the easy part, relative to the emotional stakes. I don’t want to leave Bess bereft of direction: I like the idea of a low-impact set of remains management, and one that symbolizes becoming part of the earth again. Conventional cemeteries probably made sense at a time in history when most people never traveled more than a few miles from where they were born and most families were large and interconnected, but they don’t seem to make much sense to me today. Conventional cemeteries seem like a tremendous waste of space, particularly in cities.

I’ve read that the Japanese have a system in which a person’s grave site is rented, not “owned,” and a person’s remains remain in the site for as long as someone pays a nominal fee—something like $20/year. When no one is left to pay the nominal fee, the site is re-used for whoever is next. Doing this ensures that not too much urbanized land is poorly used. This system seems good to me, but it’s not the American system. I’m fond also of the idea of being put in a mushroom suit and made into mushrooms, but that strategy seems to have gotten a lot of PR and yet isn’t used much.

Out of the plausible and easier outcomes, I like the idea of cremation best: then Bess can turn me into plants and/or mushrooms as she grows them (in Arizona, one has to interact with a funeral business, which is a regulatory scam, but that’s a rant for another time). When she’s got a new plant or mushroom cake, she can put bits of me into the soil. In addition to being cremated and being made one with nature again, I checked, and it’s possible to sponsor a bench in a New York City park for a not-ridiculous amount of money. So I’d like a bench sponsored for me, in Stuyvesant Park on 2nd Avenue and 16th Street. That’s a few minutes from all three apartments we lived in in the city. Whoever is in the neighborhood can come sit with me—or perhaps “on” me. Whoever wants to say hi can bring some coffee and pour a little on the ground for me, and read on a book on the Jake memorial bench. Our friend Josef stopped by to scout the park; his report listed five plausible plaque sites, with the ideal in his estimation being:

1. Outer edge, West Park. I think this is the best spot. Nice view. There’s a free book box nearby to see what people want to share and read. Quiet street behind rather than the main street. Tree behind the bench providing some shade, though it’s less full than many others.

I’m sold.

Cremation and a bench memorial seem more meaningful than conventional options, like a pointless burial in a pointless cemetery in a random place that isn’t home to me. Plus, I’m fundamentally an American, and we make shit up as we go along. Our main tradition is “let’s make up traditions.” Which is what I’m doing.

So Bess now knows what happens to me after I die.

And what happens then? I sound like a child, repeating the “And what happens then?” question, but I think about it. Bess and I have an apartment containing the physical stuff of our lives together. Bess has made it a home, which is good, since I’m too lazy to pick the art on the wall or keep the plants alive or put a cheerful blue rug on the floor. I’d live with a computer and a bed and some folding bookshelves and kitchen gear and not enough other things to make a housing unit a home. Our apartment has been a good enough, verging on outright “good,” place for us to live—the only place we’ve lived since leaving our true home in New York—but it’s not somewhere she’ll want to stay after I’m gone. There’s a transient feeling to our apartment itself and the apartment building we’re living in; no one lives here for long. We’ve probably lived here longer than we should have, but moving is a schlep and Bess has done a lot of work to make our place nice. We’ve got complementary skillsets, which makes her losing me even harder. We’ve planned to move out once we have a kid, but that process has proven more challenging than expected (which is a topic that could get its own essay, and might).

When Aragorn chooses to pass on (if I were a doctor talking to his family, I’d say “die”), Arwen goes forth from his tomb, “and the light of her eyes was quenched,” and she goes out of the city, never to return. Bess will one day leave what is now our home—the place where we lived happily for years—and she’ll go when all the stuff that makes up our lives has been boxed up to be moved or discarded. What will that process be like for her? Painful, I have to think, given how memories will suffuse so many otherwise inanimate objects. I’ve offered to donate the clothes I’m not wearing any more and otherwise tidy up my physical things, but she’s refused. She wants to do it herself.

I’ve also offered to donate some of the unruly number of books I’ve been foolishly carting around, but she’s refused that too, saying she wants to choose which ones to keep—especially the ones I’ve written in, which is most of them. She won’t need the geothermal energy textbook I’ve used when writing proposals, I think, or the books I’ve not gotten to, or the Python programming book I’ve not given the attention it deserves, but I’ll leave them. She’s claimed that she’s “keeping them all,” and that she “wants them all.” This doesn’t seem pragmatic to me, but I won’t be here to vote.

Some books, like my copies of The Lord of the Rings or The Name of the Rose, she’ll obviously want. They’re favorites of mine, and I read both out loud to her—Bess is a nervous, difficult sleeper, and reading to her helps her relax into sleep. For The Lord of the Rings, I gave Pippin an absurdly lisping voice that often made Bess protest that I should “read him normally,” as if her nightly protests weren’t part of the fun. For The Name of the Rose, I spoke all of William of Baskerville lines in my best Scottish accent, poorly but enthusiastically imitating Sean Connery. I’ve put Bess on the accounts she needs to be on and entrusted her with the vital computer passwords. She knows where the pictures are (I shoot most of the photos—there are those complementary skills, again), and she knows the organizational scheme, which is important because organization isn’t among Bess’s strengths. In searching for and researching clinical trials, though, she’s practically been a project manager: when the stakes are highest, she does what needs to be done. She’s helping to delay the day when she’ll walk out of our home for the last time, and into whatever the future will hold for her. I think she’ll live with her parents for a bit, and maybe fly to the East Coast and stay with friends for a few weeks at a time. I think that one day she’ll be ready to love again, and she’s promised to at least be open to the possibility.

As hard as it is to write this essay—I’m crying as I type—I’m sure it’ll be harder to live. Bess tells me that she feels lucky to love me so much. Not everyone gets that. She feels lucky; I feel at least as lucky.

Maybe she will walk through the empty rooms of our home one more time, thinking of all the life we lived in them. Some of our friends—Josef, Martha, others–have promised that she won’t be alone for the task of discarding and packing and moving, and I hope they adhere to that promise.

This is the image that recurs to me: Bess looking around for the last time, Bess shutting the door for the last time, Bess walking down the hall for the last time, Bess walking out of the building for the last time, Bess being alone and me not being able to do anything about it.

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

11 responses

  1. Thank you for writing. I havent been intimately acquainted with much death in my life thus far, and to be able to take away some of your experience from this essay is exactly why I read. I’m even struggling to put my thoughts into words on this comment, and deeply appreciate and respect your talent. It’s profound to read, despite the fact that everyone who has ever lived will face death in one way or another.

    I wish you and Bess the best that a stranger can.

    Liked by 1 person

  2. Lovely writing. I wrote you a few days ago, about losing my two husbands by age 43. I, too, strongly believe in cremation. Especially when you do not live in your hometown. I gave friends and family ashes in medicine bottles. Most planted trees with the ashes. But some have been all over the world. I cry as I write this, but you are being honest, so I am, too.
    When I was in medical school and my husband was dying, I went to a therapist. She said, ” Those who find great love, usually find it again”. I believe it. I’ve been blessed three times. I think of my friends who have never met a soulmate, and are wonderful people. They are whoI feel bad for. Not me! I have been blessed with love and life! You and Bess are so lucky to have each other. I pray for you and for comfort and peace for both of you.🙏🙏❤️❤️

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  3. God bless you both. Today my boyfriend and I face the same life you are living. Hnc treated initially with chemo, then radiation, the radical salvage surgery only to have it all come back in less than 3 months. He has months left, unless of course immunotherapy buys him more time… but at what cost?

    Many thanks for putting into words the thoughts that cross my mind daily. Some days, breathing is the best you can do.

    Much love to you and yours, Kim

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    • Kim, so sorry to hear it; I hope his last months are at least graceful ones, and that he has the time, space, and ability to say whatever he wants his friends and family to hear before the end.

      I assume he isn’t seeking clinical trials, or doesn’t qualify for them, but if you are chasing one, good luck.

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  4. I hope too! They don’t know what to do. I’ve done their jobs for them for the most part. Thinking immunotherapy but not definite. I don’t want his last time to be sicker than he already is!!

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  5. Thanks for the meaty post. Always a pleasure to read and think about. (As Samuel Johnson said, When a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”) Each day is a struggle and a gift of sorts. I once asked author and book collector Jack Matthews when he was 84 whether he was depressed at not having enough time to read the various books he’d accumulated over the years. He replied, “I take pleasure in living amidst so many microcosms, each one of which bears witness to its own slice of the world. Without such amplitude, the spirit would wither and desiccate like a demoralized walnut. I like to think of a personal collection as the creation of one’s own, symbolically charged environment. In one of my books I bounce off Candide’s famous conclusion, pointing out that a personal library is an intellectual’s garden. What could we cultivate that is more interesting, meaningful and telling?”

    I realize that your present predicament is first priority. Settling your affairs is very important. I hope there is time enough to talk about moments from your life which you have cherished. It’s humanly impossible to write about most of a person’s life; at best one could describe only a few key moments (and alas… only the ones that I can easily recall) . In a way a writer can only write about his past — even if in this post for instance you are writing about a future.

    PS, Enjoying the Hook.

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  6. Pingback: Turning two lives into one, or, things that worry me about Bess, after I’m gone « The Story's Story

  7. Jake, as someone who isn’t actively dying but has mental health issues that tell me that I need to, I needed to read this today. It has me sitting here reflecting on a world without me and the pain that it would cause those closest to me. Thank you for sharing your journey with me. Although some drug trials are be slow to save some lives, this post saved me from considering taking mine

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