How the light gets in: a solstice at the border of life and death

The fire in each of us, on the shortest day of the year

I once traveled unexpectedly to Newgrange in County Meath, Ireland.¹ It’s an ancient passage tomb that has marked the solstices accurately for over 5,200 years, and I’ve thought a lot about tombs and transitions in the year leading up to this winter solstice, both because I didn’t expect my husband, Jake, to survive to see it, and because it marks the tenth year I’ve spent as an attending emergency physician. My work patrolling the border between life and death is unusual, and I’ve borne witness to nearly a hundred patients’ last moments on Earth.

Humans have been grieving for our dead and building monuments to their lives for as long as we’ve been human, and Newgrange is one instantiation of the life-death process. The Newgrange webpage describes it:

Newgrange is a Stone Age (Neolithic) monument…Above the entrance to the passage at Newgrange there is an opening called a roof-box. Its purpose is to allow sunlight to penetrate the chamber on the shortest days of the year, around December 21st, the winter solstice. At dawn, from December 19th to 23rd, a narrow beam of light penetrates the roof-box and reaches the floor of the chamber, gradually extending to the rear of the chamber.

As the sun rises higher, the beam widens within the chamber so that the whole room becomes dramatically illuminated. This event lasts for 17 minutes, beginning around 9am. The accuracy of Newgrange as a time-telling device is remarkable when one considers that it was built 500 years before the Great Pyramids and more than 1,000 years before Stonehenge.

The passage tomb was dark inside when I visited, and I imagined a fire flickering in the large, blackened stone bowl on the ground, which guides speculated was used for burning: perhaps the cremation of remains, or of symbolic offerings. Maybe the fire illuminated faces performing a rite. Runes are carved on almost every surface of the structure, and if you look for meaning in the writing there, you’re likely to find signs of whatever it is you want to find. Those symbols meant something to someone standing there 5200 years before. The people who lived here are now part of the data set of “those who once lived here during [insert era here]”, just as my unique life will become part of a data set one day. All places hold the stories of ghosts, and we are connected, knowing that our own stories will probably disappear in the same way—unless we master the technology to live in space, build a Dyson sphere, and become as gods.

Jake and I have been spending the last five months writing so furiously in part because we’re a tiny part of the greater story of the human experience, one that someone might imagine in a thousand years. Writing connects us to the other people now, but writing might preserve us for the future, too; many of Shakespeare’s sonnets address this quality, as when he writes to a woman:

“But were some child of yours alive that time [in the deep future] \ You should live twice—in it and in my rhyme.”

Perhaps we’ll manage to print our writing on acid-free paper that resists time’s ravages. The voices that emerge from the past are the recorded ones. Twenty-six letters are the symbols we have right now (our runes?), and we’ve made a ritual of writing every day.

I think about all the other rituals that’ve been part of our year: twice daily trache tube site cleanings, peg tube care, daily bulleted lists of medications and the time they’re administered, scheduled infusions of Liquid Hope—but also walks around the block, sharing ice cream at the kitchen counter that Jake drinks as a slurry and I nibble off a spoon, reading side by side on the couch that we bought years ago with money from an improbable side gig. Those rituals are all to preserve Jake’s (and my) life. People don’t have to stand where we are standing to understand that something powerful is happening to us. People can read our essays and stand with us, whether we’re in the hospital, or our apartment, or at a clinical trial site (and some people are reading us from hospital beds; we know because they’ve told us so). The Internet links us to them—us to you, really. We’ve been trying to shine our own light on the darkness in the hope that it might connect us to other people who feel like they’re in the void.

In First Light: The Origins of Newgrange, Robert Hensley proposes that the concept of an otherworld, which could be embodied by and accessed through passage tombs was a central motivator in passage tomb construction from its earliest beginnings. The tomb would alight on the solstice, throwing light on the connection between the living and the dead.

I’ve never been to another passage tomb, though as I write this I wonder if that’s not exactly right. It’s true I haven’t visited other places with the anthropologic label of “passage tomb.” But I step into other liminal spaces connecting the worlds of the living and the dead every time I go to work in the ER. The ER may not be as architecturally ancient as Newgrange: the lights are always on no matter the time of year, the structure probably isn’t built to last 5,000 years, and the incinerator is located somewhere else in the hospital. But clusters of doctors, shamans of modernity, perform our rituals with stethoscopes and lab tests, frequently bearing witness to the passage of patients from living to dead. As I mentioned above, I’ve presided over that transition for so many, and that is strange not only to friends, but to many other doctors, who lose patients, yes, but don’t witness it.

The hospital is a transitory place: sometimes you enter and never leave, like it’s the Hotel California. Sometimes, though, you enter, and you pass through and out, returning to your home even when you never expected to. When Jake went into the hospital for his May 25^th surgery that removed his tongue, we didn’t know if he’d survive the operation, let alone return to our apartment. Without him, I’d feel homeless. When his tumors recurred and metastasized on July 21, each round of chemo and each ER visit might’ve been his last. Sometimes, I do everything right in the ER and I still can’t save my patient, and I have the horrible task of delivering that news to their family. I see patients whose decades of unfortunate lifestyle choices have caught up with them, and I often can’t fix decades of lifestyle choices in the ER. I also see patients whose time is simply up. Sometimes, another doctor, whose patient is the person I love, succeeds in saving Jake, or prolonging his life, and we get bonus time.

On December 12^th we celebrated Jake’s 40^th birthday, a milestone that in July neither of us expected him to reach. As I’m writing this, his tumors have shrunk an overall 12.5% in response to the petosemtamab. According to study guidelines, he’s not technically achieved “partial response,” since the definition of response is a 30% reduction in tumor size. Instead, he presently is classified as having “stable disease.” Whatever the official trial position, last night he stood at the kitchen counter and made lentil soup for dinner, then we went on a walk, and edited each other’s writing and held each other in bed. Holding the line against such an aggressive tumor feels like a solid response to me. It’s more than a response, it’s an unexpected doorway opening. He’s still hurting and suffering in many ways, but his energy has improved a little, since petosemtamab is easier than chemo, and he’s still alive and making art (and soup).

We prepared so much for Jake’s death by what we anticipated would be year’s end. Jake said goodbye to friends and family, and we’ve been saying a long goodbye to each other. We’re not fools, we know his current treatment is borrowed time—the median length of response to petosemtamab is six months, and he’s been on it for three—and though borrowed time is in a way all any of us get, the realization of how much less time Jake gets to borrow than his peers is acute. For so many months, each day has been about planning for a future with a man who won’t be in it. But now, we get to ask another question: What if he lives?

Jake could stop responding to petosemtamab and not find another trial that works, but there’s a seeming renaissance in R&D for head and neck cancer, and consequently he could hop from clinical trial to clinical trial for years. A cure is unlikely, but managing his disease is possible. If we can keep him alive long enough for Moderna to complete their mRNA factory (scheduled for 2025), which precludes requesting FDA approval, and, maybe, offer the Moderna mRNA-4157 vaccine to HNSCC patients, could the mRNA-4157 vaccine cause remission? That’s like staring at the sun, so I’m not willing to look just yet—I can’t let that much light in without blinding myself to reason. But I can see that remission is not impossible, merely improbable, which are greater odds than I’d chanced before. Jake’s 40^th birthday had felt impossible, too. What I can do is look around and suddenly see more than just the faint shadows of the next year. Jake just wrote an essay about this, “What if things go right with the carcinoma treatment? How long we expect to live affects how we live,” in which he asks: What might his place in the world be if he lives five months or five years? What will our place be? How do we plan? As Jake likes to say, this is a high-quality problem.

This year, thankfully, the solstice light isn’t so much a great transition as a seeping awareness of what has been preserved and deepened, when it seemed that those things would be lost. Jake didn’t die, nor did we fling open the windows to reveal a complete remission, flooding our lives with daylight, like we’d just turned on one of the dragon light corn bulbs Jake bought me to solve my grumbliness at early sunsets and a low-light apartment. Even now, Jake hears me and tries to fix my problems. This year, the illumination has crept in slowly, its gentle light suffusing everything when we got the news that Jake’s tumors were shrinking in reaction to petosemtamab. Every bonus hour has become the golden hour. We haven’t been around as long as Newgrange, but it feels like, just by getting to this solstice, we’re a monument to something. Maybe a monument to how much love can do. We’re beautiful in this light.

I’m reminded of a line I love from a Ram Das speech (set to music by East Forest)

“In each of us there was once a fire. And for some of us there seem as if there are only ashes now. But when we dig in the ashes we find one ember. And very gently we fan that ember. Blow on it, it gets brighter. And from that ember we rebuild the fire. Only thing that’s important is that ember. That’s what you and I are here to celebrate.”

Winter solstice is the shortest day of the year, a time to pause quietly, wrapped in the dark, and ask yourself how you want to let the light back in: through one deliberate passage, or through all the cracks in the foundation that the long year has formed? Winter solstice feels like the real New Year’s Eve, because the process of rediscovery and regeneration begins again, with each day offering more time with the sun. Little by little, the light reenters our lives. Not with a single flash, but slowly, cautiously, until we are illuminated.

This solstice, I celebrate a way forward that wasn’t there before, a soft glow to tend to like an ember, to enjoy longer than we expected, before we all return our stories to the dark. 

If you’ve gotten this far, consider the Go Fund Me that’s funding my husband Jake’s ongoing cancer treatment.

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Readers: How will you be letting the light back into your life as the days grow longer? What will you illuminate in this coming year? Let me know in the comments.

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A video of the winter solstice at Newgrange:

The passage:

My last-minute travel companions (who did not murder me and who are very nice people!) and I in front of the opening to Newgrange. Stairs are a modern addition. Photo from July 2018:

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1. I was able to purchase a last-minute ticket to Newgrange (you can only go inside the tomb in small groups on tour) by hitching a ride with some people I met off an Irish Burning Man community Facebook page, who were themselves not Irish, but were also looking to connect to other Irish Burners. Instead, we connected with each other and I joined them for a day of traveling “North.” This is not to condone the safety of randomly getting into cars with people you meet on vacation, reassured by some four or five degrees of separation via mutual friendships, but I will say that the entire trip was highlighted by doing this repeatedly, and once, even hitching a ride at 5am on a small fishing boat between two Aran Islands. Moderate disregard for personal safety in this and other ways (see: spending the night I was marooned on Inishmaan, where the two inns were full, in one of the stronghold ruins) was responsible for every trip highlight. I remain close friends with two of the people I met along the way. I loved it so much I would have moved to Galway for a job in 2020 except for, well, the pandemic. No one was murdered. It was great. Go forth at your own peril.