I'm homeless if Jake is not my home

If the place I belong is beside a man who's dying, where will I belong after he's gone?

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Jake and I have, for years, lived in tiny urban apartments—an effect of inefficient zoning laws that mean cities can’t provide enough units to meet demand—squeezing our lives together first in a 320-square-foot studio in Manhattan, where I did my medical residency, then a slightly, but not by much, larger one-bedroom apartment down the street. We lived on First Avenue near the L train, where the water was brown, the squirrels would sometimes try to jump in through the kitchen window[1], and the kitchen didn’t have the space to adequately accommodate two adults. Small kitchens didn’t stop me from joining Jake beside the stove when I got home from work. The apartment often smelled of zucchini parm or roasting vegetables or chana masala—all the scents of Jake’s cooking that’ve always signaled to me: “I’m home.”

In the nights after the horrific total glossectomy that was supposed to cure Jake’s cancer, we again reduced ourselves to a single room, this time on the fifth floor surgical ICU: Instead of books and sit-stand desks and cooking gadgets, the stuff of our life became the IV through which Jake’s antibiotics and pain medications flowed, the suction canister and tubing needed to remove mucous plus from Jake’s tracheostomy tube, the piles of gauze to wipe the excretions from around Jake’s mouth, and the myriad of other tubes keeping him technically alive. I’d wake in the middle of the night and creep to the bathroom, trying not to wake him, in the same sneaking way I’d leave for a midnight shift in the ER during my intern year, attempting to avoid a loud click from our studio apartment’s door.

As Jake lay in his hospital bed, trying to recover from surgery while drugged and swollen beneath the liminal half-light, I wondered if we were inhabiting the last room we’d ever share. Tubes were running into his leg, his neck, his arm, his nose, and his penis. A scar traveled from knee to hip on his anterior left thigh, where Dr. Nagle, one of the ENTs who’d worked to save his life, had removed a section of muscle, fat and skin to create the “flap” which replaced Jake’s tongue. I wondered: “Where can Jake get the strength to be able to stand and walk out of the hospital?” And: “Will his flap lose blood supply, become necrotic and require another surgery? Could Jake survive another?” As an ER doc, I know better than most that plenty of people who come to the hospital never get to go home.

The social worker suggested Jake might be more comfortable if I made things “Homey.” Home-esque? Home-ish? Home-adjacent? I was tasked with bringing in familiar items. Apparently, the books and pictures and the fuzzy red blanket Jake sleeps with might convince a man half-gorked on opiates that he wasn’t in a fresh hellscape but his nice, familiar, soothing bedroom—or at least a very poor facsimile. That’s asking inanimate objects to do a lot of heavy lifting. Despite my skepticism, I picked some things and brought them on the second day of Jake’s recovery. I’m not sure Jake noticed. Much later, he told me that he didn’t remember many details about the hospital. Although he forgot details, there was rarely a time, except for during some of the exceedingly strange waking dreams the combo of heavy-duty Dilaudid and extensive physical trauma elicited, that he didn’t know exactly where he was. If anything, the small pile of books and pictures and the fuzzy red blanket highlighted the wrongness of where we were, and of his sudden tragic fragility.

The weirdly sterile room remained weirdly sterile; Jake didn’t belong in this room. What were we doing here? How had this happened? Why was there an annotated copy of Lord of the Rings beside a urinal filled with wilting blue hydrangeas? That one I can answer: I brought in the copy of Tolkien, but the wilting blue hydrangeas were only partially due to me. You see, every day around five p.m., an employee from a nearby Trader Joe’s would bring the store’s flowers that were about to die to the Mayo emergency room. I guess they figured that it doesn’t matter if the flowers are going to expire in a few hours, because so are some of the patients. The desiccated blooms weren’t always great for morale as delivered, but if you put them in sugar water and gave them an hour, they’d often perk right up (the same mechanism of action perks me up when I have a piece of candy at work). I don’t want to sound churlish: the Trader Joe’s people were very nice and my colleagues and I appreciated the gesture. I brought some flowers in their urinal vase to Jake’s room with me after a shift; I work at the Mayo ER and was commuting from Jake’s fifth-floor room to the first-floor ER and back. It wasn’t an optimal scenario for my sanity, but the commute time was unbeatable. Jake didn’t appreciate the hydrangeas, perhaps because he doesn’t believe in the benefits of plants he can’t eat, but no one was bringing avocado trees to the ER.

Despite the efforts of me, and Jake’s family, and Mayo, nothing seemed to make Jake comfortable.

Jake described the days after his surgery as feeling like he “should be dead.” Nothing felt right. He didn’t feel like he should exist. The flap of tissue in his mouth felt alien, his leg felt strange, the tubes coming out of his body through iatrogenic holes were disconcerting. Nothing was where it was supposed to be, especially Jake. He didn’t feel like he belonged anywhere. He didn’t feel like he should “be here:” in the hospital room, in the building, in the world. I feared that, if he remained suspended and unsure where to exist, Jake might be lost to me.

I tried to bring home to Jake by simply being present myself. Forget the stuff and the things, I was his common denominator within all the walls we’ve shared. I was the comfort item. I hoped that the one place he still felt like he belonged was next to me.

I didn’t feel like I belonged anywhere, either, unless I was next to Jake. The place we both belonged had remained unchanged—it was with each other. Being together made the hospital room somehow ours, or as “ours” as we could make it.

His lead surgeon, Dr. Hinni, told me that I needed to go home, and that I needed to stop sleeping in the uncomfortable hospital recliner that doesn’t fully recline, whose design is loosely based on the medieval Iron Chair (this is different than the Iron Maiden, I have to tell Jake when he’s editing this). The “family chair,” as the nurses called it, almost fully reclines into a brutalist architect’s imagining of a bed, and it had a single, unpadded panel positioned exactly where my hip landed if I tried sleeping on my side. But the one night, early in Jake’s hospitalization, when I tried to go home, everything in our apartment seemed foreign to me.

Technically, not that much had changed, and what had changed had been changed by me, with help from our friend Smetana, in order to prep the space in anticipation of Jake’s homecoming: clear plastic organization bins on the dresser for medical equipment, a rolling desktop for his bedside, and a five-piece wedge pillow[2] contraption that took up half the bed. Yet I felt like a gremlin, no, a troop of gremlins, or tiny Icelandic elves (otherwise known as huldufólk), had surreptitiously rearranged things without telling me in the night. I slept poorly without Jake, like you do the first night in a hotel room. Jake’s absence was more distressing than waking to see him in the hospital. I lost my sense of object permanence, because there was no guarantee Jake would be alive when I returned to Mayo, given his tenuous clinical condition. The night he had to dangerously self-disimpact, for example, I wasn’t there, and no one would help him. He might’ve passed out, hit his head, and torn his sutures. The uncomfortable recliner was the only spot that gave me any comfort, due to one outstanding feature: it was within two feet of Jake.

Though I got to bring Jake back home to our apartment from the hospital, homecoming didn’t feel like a homecoming. Not only because it was uncanny to see the myriad of physical healthcare objects needed to care for Jake next to our book collections and favorite Alex Grey prints (though I hoped he wouldn’t associate the altered state caused by pain medications with the more appealing altered states during which the art was meant to be enjoyed), but because we could never again access the life we used to live. A door had shut behind us when Jake went under sedation for his surgery, and it can never be reopened.

Cancer has shut so many doors for Jake and me, both literal and figurative. We’ll probably never buy the house we planned to share. We’ll never hang the “do not disturb” sign from the doorknob of a room at the East Village Standard hotel on a visit to our old neighborhood. We can’t sit down at the bar for a vermouth at Huertas or share a falafel pita from Taïm. We’ll never grow old together.

Dying has a way of not only narrowing external focus, but of limiting the physical radius of Jake’s world and robbing him of his energy. Now, our most frequent adventure is a walk, talking about ideas. Intellectually, we’re as unfettered as we’ve always been. We’ve retreated into our minds to find space: reading, writing. It’s been fortunate that talking and thinking have been major interests for us, since what we love to do together can be done almost as well from a hospital bed as the three rooms of our apartment. We can talk and think every day, even on a jungle vacation in Belize—we’ve brought books on vacations, and laptops, in case an idea that strikes must be immediately, violently executed.

Jake tends to prefer his own space to the exotic trip, although the quotidian activities of life, like hikes, dinners out, or cooking for friends, feel exotic these days. Jake is a creature of habit. He likes his room, his desk, his computer setup, his space. His mind seems to work best that way. And I’m ultimately a creature of Jake. Although I love to travel, and it doesn’t take much to convince me to go to a Costa Rican waterfall or an Icelandic hot spring, I was wrong to think that the urge to wander would always be a primary impetus driving my life. The primary impetus driving my life right now is being with Jake.

I don’t miss those places that belong to the “out there” that drops away when we’re together. As I wrote in “It Only Takes 200 Joules To Restart A Heart”

“Nothing is as compelling as the world Jake and I have been creating: we wake up together, walk together, read together, write together and sleep together. The geographic radius of my world is smaller, too. I follow him to further shrink the distance. It’s always been easier to exist in the world when Jake’s lying next to me. …Our world is narrowed by cancer, but it's down to the absolute essentials: here I am, next to Jake. Here we are, together. Wherever he is, that’s where I want to be.”

Maybe we’re so good at sharing space because we’ve had fifteen years to practice, though some people never seem to work it out. We weren’t always this good at sharing: I leave Amazon boxes in a pile by the door and wait till almost all my clothes have been worn before I do laundry. He lets garlic dry on the cutting board, which transfers the taste to any apple you’re unwise enough to slice on it. He thinks I’m cluttered. I think he’s cluttered, too, which he denies and will likely deny when he reads this. We’re nominally better about these things now, because we’ve tried to adapt for each other. We still do them, though. We’re still happy to come home to each other.

Maybe relationships are less about practice, and more about learning that most nitpicky things won’t change, and learning not to care, or focusing on other matters. That we ever cared is a marvel to me now. I’m not really a person who likes to give advice, but if I had to, this would be it: Care less about these things. So much less. The essential compatibility, love, and communication skills matter. Be selective about annoying things you remember about your spouse or lover. One friend says he “doesn’t hear” everything his wife says, especially if those things are said when tired or hungry, and that’s the key to a happy relationship. He listens intently to the important feedback, the deep conversations and the loving exchanges. We’d all do better to focus our attention on that.

So much of the particular clutter of our lives is really proof of life. On our first date, while Jake and I were walking on what turned out to be our first walk (of how many thousands?), I said something that made Jake laugh and, without saying a word, he stopped, pulled a notebook out of his back pocket, and silently wrote down…something. What I’d said, I presumed and continue to presume. He still won’t confirm or deny. When he was done writing, he tucked the notebook back in his pocket as if nothing had happened. We kept walking. He just smirked the Jake smirk. To this day, I find notebooks scattered throughout the apartment. Pens, too, on every surface, in case he needs to jot an emergency note. Until writing tools cover an apartment, it hasn’t fully turned into our home. It needs pens, and also kitchen gadgets. Jake can rhapsodize about the Instant Pot and his Zojirushi neurofuzzy rice cooker and his stockpile of Rancho Gordo beans, but it’s the pens and notebooks that sprout everywhere. If we were ever lost in the woods, I’d search for discarded pens to track Jake—like following animal scat.

From Sept. 25 to October 15, we made another, albeit temporary, home in San Diego to start a clinical trial. The clinical trial is a bi-specific antibody called petosemtamab, or MCLA-158, and it’s Jake’s last decent chance. With time being so short, one oncologist we spoke with advised against moving for a trial, arguing that “there’s a lot to be said for waking up in your own bed,” as opposed to moving to a new city to receive an experimental drug that’s unlikely to work. “Unlikely” is key: it leaves open the possibility that the drug might work. Is it better to wake up in your own bed and give up the possibility? Is home as a physical space worth so much? Jake didn’t think so. I concur. I was ready to move anywhere; fortunately, what appears to be the best shot for his cancer is in nearby San Diego, not Chicago or New York or Boston, as lovely as those cities are, outside of deep winter.

As we packed up the electric car in preparation to drive to San Diego, I threw in a few of the comfort items I’d brought to the hospital, even though it mattered less what we brought with us or even where we were, than that we were still able to take walks together in the evening. We stayed in the La Jolla Family Houses, hospital-owned apartments nestled in with the graduate student housing. I stacked our books by the window in the living room. We brought the key components with us: the Vitamix to blend food, a cast-iron skillet, books, our laptops. A temporary place to live meant a temporary place to write, so we even stopped by a used furniture store and bought an extra desk for the apartment. The weather and the beautifully landscaped UCSD campus turned out to be the perfect setting to feel hopeful for the first time in months.

On days Jake wasn’t receiving treatment, we sat at our respective desks in the living room and wrote, taking breaks to walk the pretty campus, enjoying the bustle of grad student life around us, then returning to write some more. We fell into a rhythm. Some mornings, when Jake was feeling more energetic—usually the day after receiving a steroid dose—we walked along La Jolla Cove, watching the seals snuggle against each other on the rocks, and the waves slip around them. Instead of feeling like we’d been taken away from our lives, it felt like the trial was giving us at least the possibility of more life together. I wanted to call that oncologist back and let him know that the beds here were, in fact, quite comfortable, and I felt so lucky that we could wake up in them, together. 

The apartment we currently share in Scottsdale, Arizona has been a nice-enough place to live. Our physical stuff shows life being lived. But the apartment has also been filling up with signs that Jake’s life is being taken from us: mortars and pestles to prepare meds for his peg tube, clear plastic drawers filled with drugs, syringes and various kinds of plastic tubing (always more tubing), pouches of “Liquid Hope” medical nutrition.

The building itself, Camden Old Town Scottsdale, is a transient place. No one stays long. Many move here like we did, from out of state, not realizing that the building is embedded in a bunch of bars and night clubs. We nicknamed the neighborhood “the boom-boom,” for the sound of the collective bass, though our apartment faces the internal pool and is thus minimally impacted by noise. Could be that the new residents are more aware than us and realize that they’re moving into the bar and club district, and it’s really us who are out of place, even if we do enjoy, on our nighttime walks, watching the bachelorette parties running in packs and the drunken mating dances. We’d been planning to leave the Camden: the morning before we learned of Jake’s second recurrence, we were looking at buying a house closer to Mayo, with rooms to fill with a couple kids, and a small backyard for a beehive (for him) and chickens (for me). I could imagine the chickens’ indignant squawks when I reached under them to collect eggs.

Instead, we shelved the property purchase idea and re-signed our lease a few days ago, even though we outgrew this building six months after moving in. The Camden might be, as I mentioned, nice enough, but it’s not where we should be living at this stage in our lives. Still, re-signing was easier than wasting our scarce time packing and setting up a new place. If Jake has months to live, we want to spend that time talking to each other, not movers.

Re-signing was the logical decision, but after we sent back the legally binding Docu-Sign to the landlord, I cried. The lease is for 12 months—longer than Jake’s life expectancy. The Kaplan-Meier curve for recurrent / metastatic HNSCC is brutal. It felt wrong that this transitional space has accidentally become our last. We didn’t intentionally stay. So many things that define a life aren’t deliberate. The thought that the rooms we’re in now are going to be the final ones we share fills me with dread. I want us to have more: more space to fill, more doors to open, more walks to take around the block, just more, more, more. 

When we were making the decision to stay at the Camden, we sat on the couch that had traveled with us through three NYC apartments, and then cross country to our current living room. Jake held me and said it’s okay that we’re here, because everywhere we’ve ever lived, I’ve made a home:

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.

 I can’t help but think of all the rooms Jake and I won’t inhabit together. The housing unit we’ll never settle into. There will be so many more rooms in my life after Jake dies, and I won’t belong in any of them, because Jake won’t be in them with me.

Jake has written about a recurrent image he has of me, after he dies, that he can’t seem to shake:

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.

When Jake is gone I’ll have to complete the task of discarding and packing and moving. Jake’s clothes and electronics, his notes and books will be packed into storage, though I’ll keep his annotated copy of The Lord of the Rings with me (he’s read it out loud to me, giving most of the characters distinct and sometimes ridiculous voices), a few notebooks, and some pens. Maybe one or two of the black t-shirts he favors. Most of the physical stuff will go away. I won’t miss the rooms of our apartment because Jake won’t be there; I’ll only miss him. I’ll stay with my parents, some friends maybe, and then I’ll have to find a new place to live, I guess.

I have to live somewhere, but wherever I find, in whatever city or state or country, Jake won’t be there. I’ll put art on the walls, and maybe a cheerful blue rug on the floor, but Jake won’t be there. I’ll put books on the shelves and gadgets in the kitchen and my own ergonomic clicky keyboard on my sit-stand desk, but Jake won’t be there. I’ll put curtains over the windows and a comforter on the bed and magnets on the refrigerator, but Jake won’t be there. I’ll hang my keys on a hook by the front door, but Jake won’t be there. I’ll have walls, and a roof and a place filled with the physical stuff that enables my life, and yet I’ll be homeless, because Jake is my home.

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If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care. You can also read Jake’s perspective (and I highly recommend that you do!) at JakeSeliger.com

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[1] Don’t feed the squirrels. They’ll remember. You think elephants have long memories? Let me tell you about the time I tossed a single nut to Barry the pervert squirrel. For the next two years Barry, who had a few very distinct markings so I knew it was him, however much Jake scoffs at that notion and tells me I’m crazy, would scamper after me, trying to follow me into the building. He’d also hang out in the tree branch that abutted our window, holding perfectly still, except for the wind causing his tail to sway. And he’d stare. He’s stare and stare, waiting. Once I caught him staring while I was closing the window shades naked and he didn’t look away. That’s how he got his name. Moving on.

[2] If you are having ANY sort of head/neck surgery or have broken a facial bone, I can’t recommend enough this wedge pillow, which has a much better ergonomic support than a basic model, as well as a higher lift. Two pillows won’t work. A normal wedge pillow won’t work. You will feel SO MUCH better with this thing. I recommend it to so many patients coming through my ER. I don’t get any money for recommending it, nor do I even get any kickbacks if you buy it through the link.