Dying on Your Own Terms
During the last horrible month of my pregnancy, when my hands and wrist swelled and became largely useless, I became temporarily convinced that the best thing for my unborn daughter would be to swap me out with an able-bodied mother. It’s easy during pregnancy when you’re just an incubator, and in the immediate aftermath, when you’re just breasts with arms and legs, to believe that you’re interchangeable. It seems absurd now that my daughter is a full-fledged human, but at the time, according to the distorted logic of perinatal and postpartum depression, it seemed inevitable, even kind. The kernel of my novel, Unfinished Acts of Wild Creation, emerged out of that chaotic, confusing, terrible moment.
Unfinished Acts follows three generations of women who all have a terminal genetic illness. Louise, the main character, watched her mother die of this unnamed disease, and when she begins to get sick, she starts to think about leaving. She decides to go so that her daughter Lydia doesn’t have to watch her decline, and because she wants the freedom to die on her own terms without worrying about how other people feel about it. Before my pregnancy, when I first conceptualized Louise, she was not a monster exactly, but she was definitely an unlikable narcissist. Her decision to leave was at best misguided and at worst, cruel and selfish. But now I see it as a rare and surprising act of generosity. I came to that conclusion, not just because of my experience as a mother, but because of my experience as a daughter.
While I was writing this book, my mother began a precipitous decline. She had a severe head injury in her mid-60s, and as she approached eighty, her systems began failing inexplicably. She would lapse into comatose states for two, three, four days with no known cause, and then wake up, also with no known cause. This happened so many times it became a ritualized play, and my sister and I dutifully fulfilled our roles.
The pattern was the same. She would lapse into unconsciousness. We would sit by her bedside, holding her hand and singing and saying goodbye. She would wake up. There would be a moment of joy at seeing us by her bedside. We would explain what had happened. She would be amazed and relieved to be alive. We would cry, we would hug each other, and then we would be forced to explain her new limitations—that she was in assisted living, that she could no longer walk, that she could no longer read, that she could no longer go to the bathroom without supervision, and so forth and so on.
At first, my sister and I would greet her return with overwhelming relief, but by the third, fourth, fifth time, it became harder and harder to summon it. Each time she was more diminished, more enfeebled, more disabled, more confused, more delusional. Frequently, before she went into one of these coma-like states, she would have a series of inexplicable convulsion-like movements. They weren’t seizures in a literal, neurological sense, but they presented in a similar fashion. She experienced involuntary movements that began in her abdomen and would move up to her arms and legs, a rhythmic beating of her limbs against the sheets.
One of the most disturbing aspects of this was that a few years prior, I had experienced the same movements. It was after my car accident when my neck pain was extreme and my central nervous system severely impacted. I beat my limbs against the sheets in the exact same rhythmic pattern as if we had the same choreographer. Watching my mother engage in the same series of movements, I became aware of the terrifyingly literal connection between our two biologies. From that point on, her fate felt like watching a preview of my own, and it haunted me. I would flash back to her body arching and beating against the bed at random times while making breakfast, putting my daughter to bed, stepping out of the shower. “This is why Louise left,” I would think in those moments, “to spare Lydia this.”
Don’t get me wrong. I wanted to be there for my mother. I wanted—needed—her to know that she was truly loved, but I also felt like I could never do enough, was never a good enough daughter because her needs were enormous and never-ending. She was frightened, alone, trapped in her room all day, and even though I talked to her multiple times a day, I saw her as much as I could, I sang to her, I got people to read to her, I argued with the nurses, I argued with the doctors, I went to every single appointment—it still never felt sufficient.
Once when she woke up from one of her comas, my sister and I sat with her for two or three hours and then told her we had to go home.
“But I never see you. You never spend any time with me,” my mother said.
We explained that we’d been there for days by her side saying goodbye, singing to her.
“That doesn’t count. I wasn’t conscious,” she said, like some sort of Borscht Belt caricature.
“When did you become such a stereotypical old Jewish lady?” we teased her.
But later that night, lying awake at two in the morning, I was overtaken with guilt.
When she did finally die, it was brutal and extended. Hospice is anything but peaceful. My sister and I sat there for close to a week watching her die slowly of thirst, rattling with each breath, her skin mottling and her body beginning to smell. On the ride home from this interminable death watch, I said to my sister, “Louise was right. She was right to leave.”
My sister argued with me. I didn’t even really mean what I was saying, but also part of me did. Part of me wished my mother had spared me this, that like my father, she had dropped dead instantaneously, instead of drawing it out. The thing is, I know that I’m not as brave as Louise. I won’t be able to spare my daughter when I’m dying, hopefully many decades from now. I’ll want her next to me. I’ll want to sniff her head one last time. I’ll want to hear her sing to me. The thing is, I know I won’t have enough courage to die alone.
