His gravity

Yesterday I was talking to a friend on the phone—a friend far away who’s left her city and her home to be with her dad while he slowly succumbs to brain cancer. She’s been watching him die for months. We often say “watching him die”—although when we’re with our dying parent, we talk to him, hold his hand, kiss him, spoon the small portions of pudding he can tolerate—but as “healthy” people we relegate ourselves and each other to the helpless role of spectator. Our actions feel small. Because there’s nothing we can do to change the outcome, it seems that there’s nothing we can do at all. We watch. We observe someone we love going through something. It’s his experience.

What are we bystanders going through? Thomas Bernhard’s harsh criticism of his own reaction to his friend’s decline reminds me of the way some of my mom’s friends and family reacted to her illness. As my mom’s dementia progressed, people visited her less and less. Too disturbed by what they witnessed as the person they had known faded away and was replaced by a stranger. My ill, demented mom could be brutal, abusive, and many who had been close to her when she was healthy simply couldn’t withstand the change. They would explain, “I don’t visit because it does her no good.” Really, it was themselves they were protecting. In Tangles, Sarah Leavitt exposes the disgust and aversion friends displayed as Leavitt’s mother wasted away to Alzheimer’s. Even when illness isn’t contagious, quarantine nevertheless asserts itself, becoming more and more restrictive as the illness wears on.

But aren’t I guilty too? As soon as I was able, I moved far away from my family, leaving the day-to-day care of my mother to my dad and brother. For years they looked after her in the house, and then for years after that they visited her multiple times a week at the nursing home. I saw her Christmases. I visited the home when I could. But I felt ashamed that I wasn’t able (or willing) to do more. I am not a good character. I am quite simply not a good person.

My friend is with her dying father every day. Rather than disassociate herself from him, rather than avoid him, she finds that she and her brother gravitate toward him, moving unconsciously to his side throughout the day to touch him, a cosmic force. His body now a beacon, a buoy marking the site of his spirit, the locus of his soul that’s submerged somewhere deep. No longer visible. No longer available to those who love him. Brain illnesses, despite how vastly different cancer might be from dementia, present as surprisingly similar disasters. My friend and I repeat to each other the brain. The Brain. Whatever personalities our brains house, however magical and profound our consciousness, our ability to be is at the mercy of hardware. The destroyed brain doesn’t leave behind a pristine shell. Instead the entire body morphs into a cypher of the inner storm—a distortion of the figure we thought we knew that presents us with an obvious message, but one impossible to interpret beyond the cold prognosis.

Interpreting responsibility in the face of death is even more confusing. We might not understand what kind of “end” death signifies, but the ongoing life that’s granted in the wake of someone else’s death is enough to fuel despair—what should we do with this time? How can we account for ourselves? And the same applies to the time leading up to death, the care required, the immense demands on energy and time. Will we know how to do what’s right? Are we courageous enough to fulfill what our inner voices demand of us?

My friend isn’t with her dad now because of obligation but because of gravity, his pull, the magnitude of their bond. And even so she worries, in the small moments she thinks about herself—when she contemplates what this experience is like for her, the toll it’s taking—that she’s not a good character. I’m so moved by her struggle, by her tenderness, by her generosity, by her grief. I may not know quite how to forgive myself for the ways I failed my mother, but I do know there’s a feeling of remedy, redemption in this sympathy, this shared mourning, this facing fear in the face of death.

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