What It's Like To Watch Your Partner Die

Illustrated by Louisa Cannell.
Last summer, I was reading one of my interchangeable brain-candy British thrillers in my in-laws’ bedroom, leaning back in the off-white leather easy chair, when I looked to my right. And on their bookshelf crammed with family photos and paperbacks, was a box. On the side, there was a sticker: Justin C. Williams.
For a second, I assumed the carton contained mementos of some kind. But then I saw the return label — an undertaker in Manhattan — and I realised: That’s my husband. Forty-one years of a life teeming with downhill skiing and Tuscan wine and a love of architecture and penne Arrabbiata, smushed into a carton now filled with his ashes. I can’t bear to touch it, to acknowledge that it’s real, or to spread his remains — something we’ll do once our 6-year-old son is older and can grasp that his daddy no longer exists in human form. “Mummy, I wish daddy was here. I wish he could come back,” Alex still says to me. “So do I, baby, so do I,” I tell him.
They say your brain can squash memories of pure pain to help ensure your survival. If we remembered the agony of childbirth — in my case, 17 hours of induced labor with no progress, ending in an emergency C-section — the human race would cease to exist, because no sane person would go through it again. But the day my husband died remains as fresh to me as greenmarket peppers.
In the blurry weeks leading up to his death, in April 2012 from a particularly aggressive form of brain cancer, I finally somehow grasped that things would not get better. That as dismal as each day was, it was the best it would be from that day forth. That I should be documenting every lucid minute Justin had with Alex, because it might be the last one.
We had a child, and a house in Texas, but no powers of attorney, no wills, no documents transferring ownership of anything to me. We had no one appointed as a guardian for our son. It was left to me to handle that paperwork. And trust me when I say this: The only paperwork I had ever handled before was the packaging that arrived with a Saks Fifth Avenue delivery. I asked around and found a friend was married to an estate attorney, whom I hired to draft everything up in hours; Justin was awake enough to sign. I scoured his emails to find banking information so I could pay the mortgage, the property taxes, the homeowner's insurance. Did we even have it? Yes, we did.
Photo: Courtesy of Donna Freydkin.
In one absolutely glaring bit of dimwitted myopia, I’d never signed Justin up for my company’s very generous spousal life insurance policy because he’d always been so maddeningly fit and healthy. And he'd never gotten his own because, well, he was fit and healthy, and we had so much time and we’d have so many kids and see them grow up and travel the world together. And when we realised the fallacy in that fatal shortsightedness, it was too late. No insurance provider would cover anyone with terminal brain cancer because medical records don’t lie. Ignorance, my friends, is the opposite of bliss.
And it was up to me to inform those closest to us that we’d hit the end of the road. There was no easy way to do it, so I didn't. Imagine a Facebook post: What's on your mind? Oh you know, watching my husband shrivel up and die after a terminal brain cancer diagnosis. Feeling: sad.
I don't think so. So I parsed info out sparingly, and only when asked. The flip side of that, of course, was that most people in my life had no idea how much help I desperately needed.
Our friend Debbie had flown in from Los Angeles to say her goodbyes that final Friday. She arrived on the red-eye and was visibly appalled at Justin’s appearance — he’d gone from ruggedly handsome and athletic to emaciated and atrophied, his hair snarled, his nails gnarly and dirty. She decided to trim them, and gently took each finger into her her hand, murmuring to him. Justin had been prescribed anti-seizure medication, to stave off the inevitable as his glioblastoma devoured his brain, and thus far, they’d worked. He was off the chemo; none of it had been even slightly effective. And he was on Fentanyl (the same drug that had killed Prince) to help manage the pain as part of his at-home palliative care.
This is what the spiral into death looks like. At least, to me.
Debbie and I were in our bedroom; Alex, who had turned 1 a few months before, was napping in his crib in the next room. And just like that, the anti-seizure drugs tendered their resignation. Justin’s body began convulsing and shaking; his head thrusting back and forth, teeth bared. Debbie screamed at me to help her turn him on his side, so he wouldn’t bite his tongue. I stood, frozen. The sheer horror of the situation, of seeing a once virile man reduced to a quaking sack of flesh — I can’t begin to quantify it. He writhed and moaned, his eyes rolling backward. Like a stupid wax figure, I froze. “Call 911!” screamed Debbie, so I finally did. Even then, my first thought was a kind of shame, that I was making such a big fuss and drawing so much attention to us in our otherwise staid midtown building.
Within minutes, the fire department barged into our apartment, followed by EMTs. They were kind and decent and calming, and loaded Justin on a stretcher and rolled him out, taking him to St. Luke’s hospital. I sat in the ambulance with him, attempting to hold his hand even though he was unconscious, only twitching once every while. When we arrived at the E.R., I told the beleaguered attending physician that we had a Do Not Resuscitate document, and that it was our intent to let Justin die naturally of his terminal brain disease. The medical staff glared at me. Was I sure? Was I absolutely sure? Yes. Yes I was. In that moment, I felt like a murderer.
From there, per my request, Justin was transferred to the hospice centre at Bellevue Hospital. It’s a soothing cocoon of a space where people go to die, and where each staff member deserves a presidential medal of honour for the decency they show to patients in no condition to acknowledge it. A man in the next room groaned for hours, surrounded by his family. Justin, as a nurse sponge-bathed him, kept whispering, “Fuck, fuck, fuck,” to himself. Somewhere, I thought, his sardonic and intensely wry sense of humour must have remained intact. He never woke up. Never opened his eyes.
But just in case, I’d brought photos of us as a family to keep him company. I spent most of Saturday with him, telling him idiotic stories about work, and how our son was on a weird hunger strike because my aunt, who was watching him, couldn’t locate the bizarre Icelandic yogurt he would eat for every meal at that time.
I went home to have dinner with friends, and we toasted Justin over his favourite Italian food and wine and strived for some sense of normalcy, whatever that looked like now. None of it seemed real. It still doesn’t. That night, at 3 a.m., my phone rang. I knew what the news would be before the nurse uttered a single word. She said I could pick up his belongings the following day. I couldn’t bring myself to come back. The hospice transferred his corpse to the funeral home.
It’s at times like these that you don’t need prayers or uplifting emails teeming with phoney positivity, nor notes telling you that god only gives you what can handle (spoiler: That’s in fact incorrect). You need people like my friend Suzanne, an executive at a major financial corporation who knows her way through morasses of paperwork and asked me for the name of the funeral home that Justin’s doctor at Memorial Sloan-Kettering had given me. She’d gone with me to hear Alex’s first heartbeat at six weeks. And she was there for the end of a life, too. By choice. “I’m taking care of everything,” she told me. “You don’t need to make a single call. It’s the least I can do.” So she and my mother-in-law did.

The less I can visualise him, the more it shatters me.

It cost roughly $750 (£560) to have my husband cremated — cheaper than a ticket to his beloved Chianti region in Italy. My mother-in-law arranged for the ashes to be shipped to Texas, where they still sit in their sturdy box. You need people like my cousin Olga, who showed up at my apartment the day after Justin’s death with enough food to feed a small country, the grilled salmon and my beloved potato salad lovingly cooked from scratch. My parents flew in from Germany, just to hang out, and be there, and make me feel less alone.
Loss, despite what inspirational cross-stitches or Instagrams will tell you, doesn’t get easier with time. You don't miss someone any less just because they’re not around. You only get slightly more used to their absence. It’s like a searing burn that throbs the first day, but a little less as time goes on, until you only have the discoloured skin to remind you that you scalded yourself in the first place. But the scar never disappears. And if you think about it you can still feel it burning, even if that part is only in your head. What does go away? The sound of Justin’s voice. His Texas drawl. The way he lovingly called me Bilo, after a character in one of our favourite films, Borat (don’t ask — it was said with love). And the less I can visualise him, the more it shatters me.
And there’s still stuff I haven’t quite figured out or mastered, because I simply lack the energy to do it all. It’s draining. How to get my son a new passport, given that both mum and dad signed off for the first one but one-half of that puzzle is now dead, yet the application asks for two signatures. How every standard piece of school and camp paperwork requires the names of both parents, even when only one exists. How to coolly and unflinchingly tell people, should they ask, that I’m a widow, without then contorting myself to make them feel comfortable with my reality: “Really, it’s fine, it was five years ago, it is what it is; bad things happen to everyone.” Only no, they don’t, not on this scale.
And then there’s Father’s Day, when all the kids at school make cards and trinkets, and my son meticulously crafted something that said: "I love you daddy forever and ever." That night, I hugged him so tight and tried to celebrate what can only be a raging void inside him.
I wake up at least five times a month with a smile on my face, suffused in the warmth of a happy, cozy dream. Justin and I had had a squabble, maybe about my prolific spending on shoes, or his pressing need to buy a new bike and ride it over the Brooklyn Bridge instead of having dinner with me, but we’d made up and were meeting for breakfast. He was here. He was breathing. And he was mine. And then, it hits me. The man I married is in a cardboard box. And he’s never coming back.

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