It Only Takes 200 Joules To Restart A Heart

Where Jake's going, I can't follow.

I follow Jake around our apartment like I’ll lose him if I don’t have eyes on him at all times, or, preferably, an arm or a leg or both. I watch him as if he’ll disappear during a blink. I cling to him like I don’t believe in object permanence. I hold onto him like he’s dying, because he is dying of metastatic squamous cell carcinoma of the tongue, and a part of me superstitiously believes I can physically lay more of a claim to him than entropy or cancer if I just hold on tightly enough.

I’ve been an ER doctor for twelve years, and I know there are limits to what medical science can (or should) do, but I’ve yet to accept limits on love. Why can’t I keep Jake running on the energy supplied by how much I love him, the amount of which would only have to equal a measly 200 Joules on a biphasic defibrillator in order to restart his heart? Hell, I’ve shocked hearts back into beating at work using less. I could defend myself by claiming to follow so I can  spring into quick medical action should he have an emergency, but our apartment is only three rooms, all with thin doors, and I can always reach him in seconds. But why justify a need as basic as air?

Jake’s told me he finds my preference to follow him around charming, as if I’m an imprinted duckling. To be fair, I do sometimes make a small quacking noise to indicate happiness, displeasure or simple presence. Sometimes, he quacks back. Though I long-ago nicknamed him, “my duck,” perhaps I’m really his.

Jake encourages me, announcing when he is about to relocate from office, to living room, to bedroom. I’m not a barbarian and do skip the bathroom, although during chemo weeks Jake leaves the door unlocked; after his first round of chemo he half-fainted before a shower. I heard a “thud” and in response to my inquiry if everything was okay he produced an unconvincing, but loud “Yes!” followed by a pause and a quieter, defeated “help.” Dehydration was the culprit, but even mild dehydration can be dangerous during cancer treatment. On days he’s feeling particularly terrible, the  bathroom door stays open a crack. While romance does enjoy a little mystery, illness has a way of superseding shyness.

Constantly being in the same space doesn’t require constant, continuous attention.  Jake and I have, for years, engaged in the parallel play of happy toddlers: Jake at the stove, me putting away the eggs and cauliflower I’d picked up from Sprouts next door. Jake writing in a notebook while I play the guitar. Both of us on the couch, reading our books—or me reading over his shoulder, since whatever he’s reading seems to hold an almost instant appeal that it wouldn’t otherwise. I’m pretty sure Jake also finds my fascination with whatever he’s reading endearing or he wouldn’t angle his Kindle into my line of sight when I scoot closer. My corgi (RIP) used to want most to eat whatever happened to be in my hand, and I imagine my impulse to peer over Jake’s shoulder is the same. It’s fun to consume the same media, leading to a shared crankiness about certain topics like: “why is housing for cars plentiful and housing for people scarce?”, or “why do we build infrastructure so much more slowly than we used to?” Maybe one secret to a lasting relationship is finding ways to spend time with each other without demanding more than the other person’s presence. His presence, which—especially now— I can’t bear not to be present for. Which, soon, I’ll have no choice but to be without.

Jake likes to say that an eternal golden braid connects us. I’ve always imagined it going from heart center to heart center, but recently, he’s said that it comes from the back of both of our heads, a bit like a pair of cyborgs might be connected in an SF novel when they want to download each other’s knowledge packets (I’m not sure what ethernet cables are made of, but I’m pretty sure they’re not gold). This vision of our eternal golden braid doesn’t surprise me, since we share our thoughts and ideas so freely it’s pointless to wonder where they originated, or how, or why. As Jake would say, we double our processing power together. We’re inseparable, not only because we’ve come to share an external space but an internal space as well; this is how we’ve come to share a life.

But Jake is dying, and soon he’ll be too far away for me to see, or to touch, or talk with, and I can’t bear for that separation to come faster than it must. To make the most of our time together, and because Jake excels even now at solving tech and office-furniture-related complications, last week we drove to a nearby used office-supply store and bought a sturdy, basic desk, then set up a workstation for me beside his, in his office.

Our apartment in Arizona is the first two-bedroom we’ve ever had. But instead of enjoying some extra distance, in the three years since we moved here, even before Jake got sick, I’ve found myriad excuses to end up in that office, lying on the extra mattress we keep for guests while Jake writes, watching the back of his head bob in a “yes” motion whenever he comes up with an idea that entertains him. I’ve spent hours on that bed, curled up in a fuzzy blanket with a book, watching the gentle movement of clouds sprawling across the wide blue sky through the windows in front of Jake, lulled by the rhythmic clack of his Kinesis “clicky” keyboard, which he purchased  from Upgrade Keyboards, after consulting with a key switch sommelier (This is a very Jake thing to do).

Sometimes, because Jake concentrates so intently, he’ll turn and be surprised to see me, looking at me as if I’m an unexpected book he’s found on the bookshelves, the one he thought he’d lost, the one containing the purple-ink marginalia he needs for his writing. I love being looked at like I’m something he’s been trying to remember all afternoon, as if I’d crawled inside his mind and found refuge amongst his thoughts.

The more Jake’s tumors grow, and the closer they get to vital structures in his neck and lungs, the closer I need to be. He’s my vital structure. These days, I don’t like spending time outside the apartment: running errands alone, going on walks alone, or taking calls alone, despite friends’ encouragement that I “take care of myself.” That’s time without him I’ll never get back. I’ll have plenty of time to be alone, and sooner than I’d like. It’s not that I’m not independent. For most of my life I’ve tended towards “I’ll do it myself,” and yet now that I don’t want to “do it myself,” I’ll have to.  But the universe doesn’t care what I want.

While Jake is still corporeal, I’m trying to mystically absorb him: the feel of his now-bald head under my hand, the smell of him, warm and musky at the end of a long day, the feel of his arm around me. I want to be able to close my eyes and feel his presence after he’s gone, so close I can conjure him from within me at will.  

Cancer makes your world smaller, placing limitations on how far Jake can travel, walk, or stay awake. But nothing is as compelling as the world Jake and I are 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 easier to exist when Jake’s next to me. I’m an anxious person. I come from a long line of naturally anxious women (what can I say, the talent is genetic, and the stoic philosophy Jake tries to impart runs up against what I think is an inborn propensity towards worry about things outside my control). But, though I’ve not been as influenced by Marcus Aurelius as Jake has been, Jake’s stoic nature calms me. In bed, at night, I’m not just a small, conscious animal terrified to be hurtling through the vast unfeeling void of space. I’m that and I’m warm, under the covers, beside another (less) small, conscious animal who holds my hand while we hurtle through the vast unfeeling void of space,  feeling love for one another. Our world is narrowed by cancer, but down to the absolute essentials: here I am, next to Jake. Here he is, next to me.  Here we are, together. Wherever he is, that’s where I want to be.

It’s been easy to stay physically close to Jake, because he’s also been sticking close to me: the tickle of his hand resting on the back of my neck, his head leaning companionably against mine when we sit beside each other, following me outside to the balcony to watch (and smell) the monsoon rains. We’re making the most of what he calls our “bonus time”— all the time between the horrific May 25^th surgery that  initially removed his cancer (and also his entire tongue), and the time he dies; time he never expected to have, because he never expected to wake up from the operation.

On July 21^st, when we found out that there were already eight new tumors in his neck and lungs, we thought that bonus time would be over within a few weeks. I held him even harder, then, trying to squeeze out more: more days, more months, more years, more walks, more late nights in bed, more talks, more time, like trying to wring out the last bits of juice from a dehydrated orange. My nails dug into the flesh of his arm with a mounting, barbarous panic. He loosened my grip, looked me in the eye and said, “Remember, I should be dead. We weren’t supposed to have this time at all. Whatever we get is great.”

Barring a miracle from an upcoming clinical trial, we don’t have much more time. Neither of us know how long the bonus time will last, but the median survival from time of recurrence is about 12 months for head and neck squamous cell carcinoma (HNSCC), and the chemo isn’t working as we’d hoped. The path to Jake getting even modestly more time is tightening uncomfortably, like the tumors taking up space in his neck, making it hard for him to move; if his clinical trial drug fails, as is probable, he’ll be at the true end. In the meantime, we’ve promised each other through tears that we’ll leave nothing unsaid, and we won’t leave each other alone.

 “I’ll follow you from the other side, if I can,” Jake tells me. We’re not religious. But if we’ve found each other in the vastness of space and time once, it seems conceivable to imagine we could somehow do it again. Jake wraps his left arm around me, drawing my head to lie on his left chest, the side opposite of his chemo power port. I let myself be soothed by the fantasy of forever. When we’re close, instead of “invading each other’s space,” we expand the possibilities of what space can hold.

I pick up the laptop I’m writing this essay on and follow Jake from the bedroom into the common room, curling up beside him on the couch, my hand idly tracing the scar on his thigh where a long strip of muscle was removed to make the flap in his mouth that replaces his tongue. I close my eyes and I focus on the feeling of his warmth beside me, and the sound of his voice telling me about what he’s been writing and will be writing tomorrow. He puts his hand on my arm, and a tiny shock of static electricity zaps me. I wonder: when Jake dies, where will I find the energy to restart my own heart? How many Joules will that take? I squeeze myself closer, closing the distance between us as much as I can, for as long as I can. Because no matter how much I want to, where Jake’s going, I can’t follow.

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

If you enjoyed reading, let me know by giving the heart button below a tap, sharing, and subscribing, if you don’t already.