The title of this article is a lie. I don’t actually know how to survive. I don’t even know if I have.
As of this writing, my mom died less than three months ago. I found out she was sick on the first of April; she got her cancer diagnosis twenty days later. She lived for five weeks after that.
At one point — after diagnosis but before death — I sat in the bathtub after a long day keeping vigil by my mom’s bedside, noticing the chipped remnants of pink nail polish on my toes. When I had put that polish on, I didn’t even know she was sick.
In some ways, my mom was old-New-England stoic. She used to be a runner; the family lore says she ran ten miles every day up until the day she had me. She had all three of her kids without epidurals, and she didn’t like to mention when she was sick or in pain. She just got up in the morning and kept moving forward, no matter how she felt.
That’s how she handled the first three months of her illness. She’d always had minor, recurring stomach issues like acid reflux; for a while she thought she had a very bad case of it. Then one morning she woke up and couldn’t keep anything down.
Sometimes it was nausea. Often it was a hard gag, a full-body gag. Noisy and horrifying. She used to send us out of the room when it started; she didn’t want us to see.
What was happening was that her tumor was obstructing her intestine. Nothing could get past. Her diagnosis was a long time coming, and my dad and I did plenty of second-guessing about the interim after she died.
But the truth was that once she started feeling it, the end was inevitable.
My mom was a gourmet cook. Spicy tacos and rich Thai curries; fresh Vietnamese summer rolls and baked salmon rich as butter. Holiday feasts that were absolutely not to be missed. Pickles and dill beans that were the stuff of legend.
That was one of the things the tumor took, before it took her life. It wouldn’t let her eat.
At the hospital, they threaded a PICC line — a soft plastic tube — through her arm, up through a vein, and into the vicinity of her heart. Then they set up a machine that pumped liquid nutrition directly into her veins. The machine made a vaguely pleading, grinding noise as it did its work.
In this way we kept her from starving. But we also fed the tumor. It grew daily, bloating in her stomach, eating what she ate.
The tumor made her susceptible to blood clots. There were large clots in her legs and one, an ominous shadow lurking in her lungs.
We knew the clots were there because the day she was supposed to get her first round of chemo, she lost her breath just walking into the living room. I went upstairs to find my shoes, and saw my dad’s car peeling out of the driveway from my bedroom window.
At the hospital, my mom seized up on a gurney. They put sieves in her veins to keep the clots in her legs from wandering, but there was nothing they could do about the one in her lungs. Her heart was straining so hard to beat against it that one of her ventricles was enlarged.
I sat in the hospital room with the news on mute. In some far-away world Donald Trump was also president and a broader apocalypse, beyond my private one, seemed very nigh. I didn’t care. I was numb from the outside in. I stared at the floor and thought maybe it’s better if it just happens now.
Before this happened, I couldn’t imagine telling a parent I was OK with their dying. I would stand stalwart in the face of reality and refuse to make my peace. In this way I believed I could anchor them to the world.
My dad and I spent a week sitting by her bedside, holding her arms down so she wouldn’t rip her PICC line out. She writhed and made sad little keening noises and asked for more painkillers with jaw-clenching composure.
When I knew there could be no recovery, I begged — quiet, in my head where nobody could hear — for the end. Like a trapped animal. I didn’t think about how it would be after, when I’d have to contend with myself. When I’d wonder why I didn’t stay strong and exhort her to fight, or whether it would have made a difference.
I didn’t think of the future at all. I could barely see beyond my next footstep.
Not long after my mom’s diagnosis, I spent an entire night weeping for her. Mourning her. Then I went into the hospital and saw her in her bed. She seemed so small and vulnerable. She held on to my hand so tight.
My mom was still alive. And she needed us to know it; to not put her in the grave before the tumor did. When my dad started to unravel about her death, I’d remind him — she’s still alive. She needs us with her now. We don’t mourn the living in this house.
Instead of anchoring my mom in this world, I anchored my dad in the present. We weren’t religious. We didn’t pray. We took one step, then we took another.
At the end, my mom was in a twilight between rehabilitative care and hospice. People kept bringing up the option of caring for my mom at home. They would not shut up about it. I wished they would.
If my mom went home, it would mean my dad and I would be solely responsible for the job it now took an army of nurses to do. There would be a visiting hospice nurse once a week or so; and a hotline we could call at any time. “We’ll come out to help you whenever you need it,” the hospice lady reassured us.
I interpreted that to be roughly equivalent to when your spouse promises to “help with the housework.”
I didn’t want us to be the ones administering painkillers and turning her every two hours and cleaning her bedpan and giving her suppositories; keeping vigil all day and listening in the night for calamity. It was all I could do to sit by her bedside and be present while trained professionals did that.
My dad has an emergency response background and basic medical training — he looked this possibility right in the face and didn’t flinch. It was me who cracked.
But it wasn’t the high-stakes meat-grinder of daily caretaking that scared me the most. It was taking death home with us and installing it where we slept. With my mom in hospice care, we could leave and come back. Taking her home meant no escape.
On a deeper level — and I couldn’t look straight at this until later — I couldn’t stand the thought of her dying in our childhood home. I didn’t want the terrible sounds of her dying to haunt that place, or to imagine my poor father alone at the end of this, trying to sleep in the room she died in.
How could I ever leave him there? How could I go back to my life? I wanted to be able to go back to my life.
When she was lucid, Mom wanted to stay in the hospice facility. If she told us she wanted to go, I’d say yes, I said to everyone. Of course I’d say yes. I think it was true.
I compared notes with my sister and brother: it had happened at the worst possible time for all of us. My sister had just gotten a promotion; my brother, a new job. I’d just made some major changes to my life and thrown myself into a huge new project.
It felt wrong to care about anything other than her. But if we weren’t careful, we’d lose the lives we were building as a side effect of losing our mom. There was no one to prevent this but ourselves. I had also to think of my own health, my mental wellbeing. How to survive when a loved one does not.
People said I’d be in my bed for months. I don’t know how you keep going. Only those who hadn’t lost someone said this. My unspoken thought was: you’ll find out. Nobody gets a pass on loss.
You do what you do not because you’re strong, but because you have no choice.
I was both stronger and weaker than I thought. When my mom was being swallowed alive in her hospital bed — my whole life casually imploding in the background — the world shrank down from its broad horizons until all I could see was one foot in front of the other.
I lived through this moment, then the next one. I told myself I will survive this. I couldn’t save my mom. But I tried to save myself. I don’t know if that makes me a terrible person. I don’t care. I’m still here.
I don’t know how to survive a loved one’s death. There are no maps here. You can only keep going.