What's it like being married to a dying man?

Jake is sitting on the couch beside me when he asks, “What’s it like being married to a dying man?”

At first, I think I’ll be able to answer easily. I’ve been answering it implicitly for the last seven months, although I didn’t really know he was going to die, soon, until Friday, July 21—three days ago. I’ve been keeping a journal, so I’ve had a place to record the difficult, confusing, and sometimes banal details, like the pitch of the feeding tube beep, the smell of the hospital rooms, the myriad of administrative frustrations. But when Jake asks me what it’s like being married to a man who won’t be here in six months, for his 40^th birthday, I’m speechless. I open and close my mouth a few times, because “what’s it like?” isn’t just about loss, although it partially concerns that, and it isn’t about regret, although that’s part of it too—and many other intrusive thoughts find their way unbidden into my stream of consciousness.

“What it’s like” is: it’s like gaining enormous, terrifying clarity. The moment when you realize the right path, the yes or no answer, the end of the debate. Clarity might sound great— don’t we all want clarity? But clarity is cruel, too. We’re fond of illusions, and we’re fond of fictions, which are themselves a sort of illusion. We lie to ourselves about how attractive, capable, intelligent we are. Staring into the face of what matters means reconciling with all the time you spent focusing on what didn’t. And it turns out, that was a lot of time. Why was I watching TV? Browsing Instagram? Holding my phone instead of a person? Fighting the silly fights? Prosecuting pointless arguments? Clarity shows that love matters, as does recognizing love, so that you can nurture it and appreciate it. Romantic love matters, but also friendship love. And yet so many of our daily behaviors and practices are antithetical to these clear, high-level principles.

With clarity came the realization that I’d done a lot wrong—time spent, for example, not recognizing love because I was nursing my own wounds and chasing some kind of made-up ideal, would be the great regret of my life, if I chose to carry it.

I’m an ER doctor, so I’m used to delivering existentially bad news, but no one I’ve given a life-threatening diagnosis to has turned to me and said: “I wish I’d held onto my grudges. Maybe one will come visit me in the hospital.” I’ve seen a lot of people die, or learn how close they are to death. The things they say and regret tend to be similar: not being kinder or more loving, not mending broken friendships and family ties, spending so much time at work (where I am, when they tell me these things). No one says: “Doc, I should’ve spent more time pursuing petty grievances.”

Clarity removes the opaqueness that leads to misunderstandings. How do we ever know another person? How can we? One woman in a Facebook group reported that, after a five-year cancer bout, her husband was dying and she’d never really loved him and he didn’t know (she didn’t think he knew).  What do you do with that? What was her life like? How did it take her so long to reach that conclusion?

My perspective is the opposite of that woman on Facebook: I really really love Jake, and now he’s being taken from me. For 15 years he’s been the greater part of my world. I used to think we couldn’t know another person. But in the last few days, I realized that much of what I have come to believe about both Jake and myself are true. We are human. So we’re petty and small and easily irritated. We too often resemble gerbils or hamsters in too small or too befouled a cage. We too often choose the wheel instead of the larger universe.

But we are also capable of profound intimacy and love and awe at another person. And I realize that, when I look at the measure of our almost 15 years together, it’s the angels of our better nature that’ve won. It’s a gift to sit with your regrets, and realize that they are not important. You can put them down. The future I’m walking into will be heavy enough without the extra baggage. And anyway, I don’t believe in checking bags.

Clarity after someone dies isn’t, I think, all that uncommon. Innumerable TV shows and novels explore what people do when faced with an unexpected loss that causes them to take stock, usually as it applies to their own life moving forward. Posthumous clarity focused only on yourself is like holding a bag you can never truly unpack, and the person motivating your change is gone, and only half the contents really belong to you.  It’s a story with only one real hero, the person left behind.

But clarity when someone is still alive, when you have the gift of some time, is the most difficult and incredible gift I have ever received. You’re not looking at yourself. You’re looking into the eyes of the other person, and seeing them, as well as yourself. And if you’re really lucky, you find that there isn’t much of a difference anymore.

So when Jake says to me “I don’t want to leave you,” I tell him, “You can never leave me, because I have parts of you that I will never give up, and that is what fills the spaces left by the parts of me you have taken.”

I don’t want those parts back, because they don’t belong to me anyway. Those, he takes.

I’m not the hero of my own story. He is. So are my parents, my friends, and the people who are going to make sure that I am carried forward into a future I cannot actually imagine and don’t yet know how to navigate.  It’s not about me, it’s about the network I’m embedded in. Trying to look into that future feels like looking into a haboob—a dust storm that we get here in Arizona, that turns everything from earth to sky into one solid, brown, inviolable wall. I don’t know how to find a path through that storm in a world where Jake isn’t here. Mostly because I can’t find my way out of a paper bag, having no sense of direction or geography, and still rely on Jake to guide me when we walk to the same corner drug store we have been going to for the last three years.

He is still sitting next to me while I type this, typing on his own computer, and we are reading over each others’ shoulders the way we have done for the last 15 years. The present is hard, but the path is clear: wake up, spend time with Jake, sleep, repeat. Past that? In the future? Who knows. 

Being married to a dying man inevitably, cruelly, means that one day soon he will be dead. I don’t really believe it, but he won’t be here beside me to edit another essay and run ideas by, go on walks at night and try to catch the lizards that hang out on the stucco walls of our apartment building, read to me before bed, pet my head when I’m anxious, and smack me on the ass when I’m climbing stairs in front of him, and yet, somehow, impossibly, I’ll still be here. Jake won’t be. The world will keep moving whether or not I feel like screaming for everything to stop. When that time comes, I will have help. My friends, my family, my network, my people: I’ve learned to quit being stubbornly independent and let people help me. But mostly, I will look inside myself, and find Jake still there, and once again he will help guide me to find my way.

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

Thanks for reading Bess’s Substack! Subscribe for free to receive new posts and support my work.