The Book of Love

Jake died ten weeks ago. Our daughter Athena is due to be born in two days. She became real for Jake before his life ended. How do I make him real for Athena as her life begins?

The Book of Love is long and boring
No one can lift the damn thing.
It’s full of charts and facts, and figures
and instructions for dancing.
But I… I love it when you read to me.
And you… you can read me anything.
-      The Book of Love by the Magnetic Fields

i.                           

Before my husband Jake died, before his cancerous tongue was cut out and replaced with an inert flap of muscle that made speaking slow and painful, before he was constantly interrupted by spitting or choking fits caused by the unrelenting mucous produced by both the treatment and disease, he told a hell of a bedtime story.

I’ve never been a good sleeper. I’d lie down and existential anxieties­, anxieties which would turn out to be feeble compared to what awaited Jake and I, would agitate me awake. He’d open a copy of Lord of the Rings, then the Depford Triology, Cryptonomicon— hefty, weapons-weight books— and start to read. In daily life he didn’t vocally modulate much (I’m told this is the Seattle accent). But when he read aloud he gave every character a unique voice, inserting absurdities that would yank me out of a twilight snooze: Pippin the Hobbit had an over-the-top lisp, Davies’s Leisl sounded like a man pretending to be a female phone sex operator, Cowboy Augustus McCrae’s southern drawl would, without warning, become Irish, Scottish, Spanish or some strange guttural mashup mangled with aplomb. I’d sit up and laugh for Jake to stop and he would ask, straight-faced: “Why are you awake? You’re supposed to be asleep.” Then he’d smirk, shrug at the book as if it would agree I was acting crazy and keep right on doing the voice.

ii.                   

Jake and I built our life on stories. On our first meeting, we talked about books. Then we spent the next 15 years sitting side by side reading. During the final year of his life, after being diagnosed with terminal head and neck cancer, we moved our desks into the same office so we didn’t have to be apart. We started writing our memoir-in-essays during the day and edited each other’s work at night. So much of the story of our lives—of any life—lies less in the stringing together of facts and more on where the narrator chooses their focus. We wanted to share the blunt truths of Jake’s aggressive cancer, while at the same time telling the story of our vital present amidst the more obvious story of loss and deprivation. We chose to focus on a plot of living for one another, generating art, and continuing toward our goal of building a family; we’d keep creating and living even as Jake was dying. Otherwise, what was the suffering part of the story for?

It seemed apt that Jake got his first dose of the clinical trial drug Petosemtamab—the drug that would help extend his life far past what doctors predicted—on Yom Kippur of 2023, the Jewish holy day on which his name would, or wouldn’t, be inscribed for another year into the ultimate book: The Book of Life.

As Jake got his infusion I wrote

Though I’m not religious, my family is Jewish—big emphasis on “ish”— and I can’t help but notice a peculiar coincidence: Jake’s acceptance into the clinical trial, and the timing of his first dose of the experimental drug, coincides with Rosh Hashana and Yom Kippur, the Jewish High Holidays. During Rosh Hashana, God supposedly writes your name in the Book of Life or of Death, or remains undecided (don’t worry: there will be an opportunity to haggle). Then, on Yom Kippur, the book is sealed. It seems fitting, too, since Jake and I spend our days writing together, that the High Holy days are an entreaty to the ultimate author: the first draft written on Rosh Hashanah, the opportunity to ask God to make some edits during the Days of Awe and Repentance, and then finally, God hits “publish” on Yom Kippur. Though we want to go on living each year, this is the first time the High Holy days have felt so immediate and relevant, even if we fundamentally believe that we’re the creators of our own story.

…I take Jake’s hand as the final drops of the Petosemtamab enter his vein. I think about how I’ll get to tell our story later: Will the tumors shrink? Will we get more time? More life? Will Jake get what he deserves? I’m like a child at bedtime, not wanting to close my eyes, asking:

Can we make the Jake story last just a little longer?”

I repeated that question as we searched for new clinical trials after the Petosemtamab stopped working, as we conceived our daughter, and as we improvised at the edges of available medical science.

Can we make the Jake story last just a little longer?

I repeated it as we tried to figure out where the fine line between too much suffering and a life still worth living was drawn. I didn’t stop repeating the question even as he took his last breath. 

Can we make the Jake story last just a little longer?

This year on Yom Kippur 2024, even though Jake’s dead, I’m still asking.

iii.                         

Our daughter Athena is due to be born in two days.

Although Jews don’t practice ancestor veneration, I feel a kinship with cultures who feel that their dead, so long as they’re remembered, are still an integral presence. Not written into the Book of Life, but maybe transcribed instead into a Book of Love, like a companion text that I can refer to whenever Athena or I need Jake.  I have the task of somehow making the story of Jake more than just a story. I need to keep him alive for her. And for me. As Carlos Ruiz Zafon wrote in Shadow of the Wind, one of Jake’s and my favorite novels: “So long as we are remembered, we remain alive.” 

But what I want is a Jake who plays an active role in Athena’s life, a Jake more vital than secondhand memories. I know logically (or at least I think I know), that I can’t write or remember Jake back into being. And yet I can’t help but wonder how close I can get by thinking of him not as a passive past, but as an active present. A verb in our lives. Without trying, I still feel his influence and anticipate his thoughts and opinions as if he were here. I can’t give him this essay to read, but I can imagine how he’d edit, which words he’d cut, what he’d take out for use in a future essay. I know how he’d comfort me when I’m anxious, how he’d make me laugh, and how he'd talk about needing to cull the books on his bookshelf while ordering a dozen more. When I read an article about a niche interest of his: bicycle infrastructure or urban zoning laws or bean recipes, I know how he’d respond and can’t help but have half of the conversation aloud, as if he were still beside me sharing ideas.   

We spent so long primarily focused on keeping Jake alive that the impulse doesn’t simply vanish.  Part of that is shock. Although Jake’s illness was prolonged, the end, when it came, still felt sudden. Jake was here and then he wasn’t. Don’t I need to be sending e-mails to clinical trial investigators looking for a new spot? Don’t I need to update the word document containing Jake’s medical history and course of treatment? Shouldn’t I research novel therapies for mucous hyperproduction? Keeping Jake corporeal consumed so much of our time. It’s felt so strange that for the last ten weeks the only body I’ve had to attend to is my own, and by extension Athena’s. When I look at my heavily pregnant belly that, too, is a shock. Athena was growing without requiring my attention. She isn’t yet here. In a few days she will be.  

Both Jake’s absence and Athena’s presence feel like fictions until I write about them. The essay writing Jake and I did while he was alive was our way of asserting his name into the Book of Life without waiting for a God neither of us really believe in to do it. It was our way of creating meaning—and so creating our life—out of what frequently felt like meaningless suffering. The essay writing I do now both keeps pieces of Jake near me while also reminding me of the truth that he isn’t away on a business trip waiting for me to pick him up at the airport, and he won’t be standing at the kitchen counter chopping vegetables for a curry when I get home from my OB appointment. Writing about Athena also makes her a reality, although so does the way she presses relentlessly on my bladder.  

I’m grateful that Athena was able to become more than just a story for Jake and I before his death. Even though he conceived of her months before we actually conceived her, there’s nothing that turns a potential plot line into a real human being like watching her heartbeat or feeling her kick. Jake said the same thing about writing: it doesn’t matter what’s in your head, only what you can get onto the page to interact with. And Athena and Jake had that chance to interact. When he pressed on my belly, Athena would push back against him. He’d move his hand to another location and one of her limbs would follow.  It was their first exchange of ideas. Her brain developed hearing the sound of his voice, her nervous system responded to the touch of his hand. She became real for Jake before his life ended. How do I make him real for Athena as her life begins?

iv.                         

The irony of trying to keep Jake’s story alive is that it’s also my job to erase him.  As his wife, it’s been up to me to call to report his death to the government, to HR at my job so he can be removed from benefits, provide death certificates to banks and to inform the many hospitals at which he established care. Because I’m a physician, Jake’s removal from an active medical record and into the “archives” feels particularly jarring. I’ve written before about how, in medical practice, you don’t really exist as a person until you have a medical record. Deactivating Jake’s accounts—especially being suddenly locked out of his inactive Mayo clinic records (although they haven’t deactivated the bills)— makes him feel extra gone. This past week, I received an influx of confirmation letters from various agencies that he’s been deleted from the system, along with instructions for me to keep a copy of the letter as proof, as if I’d forget. Two days ago, I was surprised by a new medical insurance card that arrived in the mail without his name on it as the secondary beneficiary. It’s as if I’m scrubbing  the record clean of him.

To counter this effect, I’ve made a point to surrounded myself with his name. There are hundreds of books— not the Book of Life but certainly the books that made up our lives— on the shelves with “Jake Seliger” written on the inside flap of each, beside the date of acquisition. The books  are filled with Jake’s marginalia in his signature thin-nibbed purple ink.

There are also dozens of pocket-sized Field and Moleskine notebooks containing snapshots from the inside of his mind, novel ideas, emails, to-do’s, reminders, and even more ideas. He was never without a notebook. On our first date, I said something that made Jake laugh. He stopped mid-walk, pulled out a Moleskine and jotted down a note. Was it what I’d said? He teasingly wouldn’t tell me, and I never found out. That note is in one of his Moleskines. The start of us is written somewhere in those pages.

Even though Jake left a video library for me to watch after he died, heavy on reassurance, love and the kind of words I’d miss hearing from him, it’s in his notes that he comes alive. Instead of feeling suspended in time as he does in the videos, his marginalia feels like eavesdropping on an active conversation; the open-ended nature of his commentary invites a response. When he was alive, Jake always loved when I’d reply in the margins so he could reply back during a re-read. Since his death, imagined conversations with Jake require that I create his response in my mind. But since I’ve started reading some annotated books that I’ve never read before, Jake’s notes feel like a fresh conversation with him.

The marginalia conjures Jake’s mind so fully that I took some of the books down from the shelf and scattered them on his side of the bed, along with his most recent notebooks, and a few of the Micron Pigma purple pens he favored. They’re strewn idly like limbs I can reach out for in Jake’s absence. When I awaken at 3am and throw my arm instinctively to his side of the bed, now I grasp one of the books, turn on the light and spend a few minutes reading and replying to his notes, as if sending a message across space and time.

Jake once told me that Richard Feynman wrote letters to his wife Arelene after she died, as a way of feeling a continued connection to her. Jake said I should do that. He assured me that if I write to him after he died, and he was able to, he’d read it and find a way to reply. And if he couldn’t, maybe I’d at least feel better and get an idea for an essay. His promise to try and keep up our daily habit of responding to each other’s work, even with the complication of his being dead, is so appealing, and so like Jake, that I feel a reflexive pang of disappointment when I open one of the bed books the morning after writing a comment and don’t see a new reply developing as if from invisible ink. Proof that he’s still somehow with me.

vi.

As Athena’s collection of baby books grows in anticipation of her arrival, I can’t help but think about all the stories Jake will never tell her, and all the stories he’ll never make with her. He’s going to miss all the great milestones of her life, but the one thought that keeps breaking my heart is that he will never read her to sleep.

In the days before he died, we ordered copies of his favorites: The Hobbit and the complete Lord of the Rings, which Jake inscribed to Athena for future birthdays. She’ll have the books, and she’ll have his notes and his “Love, Dad” on the inside of each book jacket. But Jake would have read aloud to her with so much excitement, riling her up with fantastical tales instead of soothing her to bed, the voices he would have still found a way to do making her giggle echo throughout the house.

I’ll tell her the stories that Jake loved, just as I’ll tell her stories of Jake.  But it won’t—it can’t—be the same.

And yet, even though Jake may not have been inscribed into the Book of Life for another year, I will be sure to tell Athena how we got unbelievable amount of what Jake called our “bonus time.”  Ten months we were never supposed to have. Ten months we wrested from one of the most aggressive head and neck cancers his doctors had ever seen.

When I hold the compiled essays we wrote over those ten months, words that make up the book of our life, and when I feel the person we created in that time preparing to be born, I’m certain that the overdue fees and penalties we paid for refusing to return the book of Jake when it was originally due were worth it. We filled every page, left notes in every margin, wrote so quickly and so completely that I still find ink smears on our desks in that shared office. We didn’t stop writing even as the book was wrenched mid-sentence from our hands. It’s why I can’t stop writing now.

The story that I’ll tell Athena is how her dad and I were lucky to have lived so fully and so generatively on borrowed time. In the end, isn’t that the most any of us can hope to get?

If you’ve gotten this far, consider the Go Fund Me that is supporting our daughter Athena’s care and future.

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