Should a medical diagnosis reshape the past? (2025)

This essay was published in the Kenyon Review in 2025. I’m sharing it here because I’m tired of emailing people the PDF, plus the re-publishing restriction period lifted. Though it came out fairly recently, it was written a long time ago1; only with great self-control did I ban myself from rewriting completely while formatting in the CMS.

It’s fundamentally a personal story about a relative, but it also circles questions I’ve been asking for a decade now: How much should a medical diagnosis reshape the past? How much does biology require reconciliation?

For hours, my mother talks to the dolls. She’s lined the three of them up on the couch in the living room, the way a child might before lecturing inanimate guests about proper behavior at the afternoon’s make-believe tea party. Each time I walk by on my way to grab a glass of water from the kitchen or do laundry in the garage, I can hear her babbling.

Lindsay was mine: round hazel eyes and coarse brown hair, the only one lucky enough to be named. Nameless Doll #1 wears the oddly realistic, cranky face of a newborn. Nameless Doll #2, given to my sister, Jess, is big enough that my mother has dressed it in a child’s pink velour jacket, the miniature version of the Juicy Couture monstrosities popular at the turn of the millennium.

Are you OK? she asks them. From what I can catch, sometimes she tells them stories, but I try not to linger or listen. At lunchtime, she resists coming to the table and asks my father whether her daughters—the dolls—know that it is time to eat. Without his reassurance, she will be agitated. They have already eaten, he says. Consoled, she sits down. I sit next to her. She ignores me completely.

Before my mother was diagnosed with dementia, I had little curiosity about my upbringing. Jess and I were distant from her; our father barely seemed to acknowledge why. Any discussion of this topic looped and looped because we could not make him understand what we were upset about. That she seemed to either sulk or sleepwalk? That she looked straight through us when she wasn’t yelling at us to leave her alone?

After the diagnosis, our father presented an idea, a pair of facts that would become my obsession. One: Your mother’s level of neurological degeneration was already past “moderate” when she was diagnosed at the beginning of her fifties. Two: The symptoms of Alzheimer’s—including personality changes—can begin twenty years before diagnosis.

Embedded within these facts is our father’s plea: Can’t you understand that you were unknowingly living with someone who was sick? You’d never truly known your mom—don’t you see that if you’d been with the real her, it all would have been different? Twenty years ago, I was a small child, newly arrived in the United States after a three-year separation from my parents. Twenty years ago, my sister had not even been born.

Possibility has opened; the past has become something bright and beautiful that never existed. In this new story, my mother’s absence and anger are pathology instead of choice. In this new story, my sister and I are meant to reevaluate our judgment of our mother and then forgive.

In a well-known Zen parable, a man in a boat sees another boat on the horizon. It is drifting toward him, closer, ever closer now, and he yells at the idiot steering it to stop and correct course.

He yells louder and louder, his cries faster and more frantic, but instead of turning, the oncoming boat accelerates. The boat smashes into his. After recovering from the impact, the man stands up, ready to give the other sailor a piece of his mind. Then he sees that the boat is empty. It was the wind all along. Would you be mad at the wind?

I start playing a game called “disease or disposition?” Our mother had zero friends. (Social withdrawal can be caused by dementia. And many other things.) She was apathetic to the point of nonresponsive at times, volatile at others. (Apathy and irritability are symptoms of dementia too.) She was unhappy, almost always (this was probably just depression though).

She spoke to us too honestly. Often, she told me I was “selfish to the bone” and that she’d known since I was five and didn’t offer to give up my seat on a bus to an old woman. Once she said that if she hadn’t spent so much time arranging to bring me to the States, she would still have a career. Unceasing bitterness over how her life had turned out manifested itself in periodic bursts of energy flavored with the desperate hope that this tweak would prove to be a cure-all. During one period, she became fixated on picking a new English name and constantly drew the entire family into lengthy discussions over the merits of Kayla versus Jacqueline, those two selected because she’d read that K and J were “strong” letters. New email addresses were created, then abandoned. Nothing was ever settled. (Inability to make decisions.) (Or maybe just indecisiveness.)

She did not say hello when I came home from school. Or know the names of my friends. She could have told you almost nothing about what I said, did, thought, or felt. Her ghostliness made me feel like a ghost. Hindsight suggests that some of her statements might have been jokes, but one stands out as closer to truth: that she liked us until we grew old enough to have our own thoughts and opinions. (This symptom is called “insensitivity to others.”)

Disease or disposition? I could go in circles forever, and still I’d never know. The science of how and at what rate these personality changes appear is not settled, and Dad said little about what she was like when she was younger, except that she was less melancholy. In college she’d read both War and Peace and The Red and the Black “because she was bored”; this was a shocking thing to hear about a person I had never seen pick up a book. Did she stop reading because of cognitive decline, age, sadness? Each behavior can have multiple threads of motivation.

The game presents a false binary, a false precision, yet it feels necessary because I do not fully believe my dad’s story that it was the disease that made Mom a woman who said she would stop loving me if I “did something bad.” Surely, it can’t have been the wind the entire time. But I also fear that my skepticism is self-serving resentment in disguise.

I cannot remember ever liking my mother. When I was younger, I primarily felt guilt for the absence of warm feelings or desire to be close. After I grew up and left the house, rancor and blame emerged as I began finding the fingerprints of her parenting style all over my life. I glimpsed her influence each time I rolled my eyes at the people who promised they’d keep loving me.

Jess and I agreed that our striving—our frenzied motion and frenetic collections of accomplishments—was in large part because we didn’t want to be like her, helpless in misery. We strove to be verbs, not nouns; active, not passive, lest we be left behind.

There was another way I tried to be different. Our mother often erupted at us for behavior like talking to her when she happened to be in a bad mood; even as a kid, it struck me as unjust that she would scream for no good reason. I swore to be different and became devoted to emotional fairness—to not only doing the right thing but to feeling the right thing.

This last vow haunts me. If my father is right about the disease, then my once-justified coolness and contempt are instead cruelty. Such feelings had been acceptable so long as I attributed to my mother the full responsibility of being a healthy adult and parent. Such feelings would no longer be acceptable.

I am a woman in a boat, and I am furious that another boat is heading toward mine. No, that’s not right. I am a child in a boat, and I am panicked because I am alone and the person in the boat in the distance is not coming. She never comes, but with the help of others I eventually learn to sail.

Three years after the diagnosis, I move back home during the pandemic. In the house, every blind is drawn. Bits of (clean) toilet paper are everywhere. Some part of my mother believes that she lives in 1980s China, where public bathrooms leave you on your own as far as wiping materials. Her pockets overflow with wads that crinkle and disintegrate and fall out and then make trails like Hansel and Gretel’s breadcrumbs. My father and I constantly pick these up from the lawn, the floor, every bedroom.

Most days, I lock myself in my sister’s room, which I use as an office. Outside, my mother wanders the hallway or crouches in the living room, rearranging shoes on the rack until all the pairs are jumbled and one of my heels is matched with a running sneaker. She is fifty-five and cannot answer a question. She is in perfect physical health and doesn’t know how to brush her teeth. She talks to those dolls, and I try not to see. The dolls, the jumbled shoes, the blankness, every part of what goes on strikes me as unheimlich—German for “unhomelike.” The word has also been translated as “uncanny.”

My father works full time and takes care of her almost all the rest of the hours. His patience astounds. Then again: He has known her since they were in first grade and has many years of buoyant memories. One day, he forgets to lock the office door while he’s on an important Zoom meeting. I try to keep my mom from going in, and she grabs me, hits me, yells at me. I welcome it. The only time these feelings of frustration and rage are appropriate is when I am being physically attacked.

Here, the game suffuses every interaction, and more often, every time I decline to interact.

If disease: I am a bad person.

If disposition: Well, what did she expect?

“I don’t know why the dolls bother you,” my dad says. “I think this shows that your mom’s real nature is very caring.”

“I don’t think so,” I say. “I’ve read lots of case studies where Alzheimer’s makes people become predators, but I don’t think that means people’s ‘real nature’ were sexual predators all along.”

I make plans to return to New York City. On one of my last nights at home, my dad sits with me in the backyard and tells me quietly of his disappointment. He wants to feel tenderness and love and concern emanating from me, but what he feels is my reserve and what he sees is my closed door.

There’s a breeze, but the sky is cloudless, that eerie California perfection that feels incongruous with the darkness and disarray inside. My mother was the one who bothered with the yard, and so every once-living thing is now not merely dead but bleached to a yellow crisp. If I squint I can pretend it’s a plot of prairie. The wicker chair feels cool under my thighs.

“I don’t need you to take care of her,” he says. “I know you’ll do it if I ask. But I don’t feel care for her from you.”

If only I had a well of happy memories to draw on for strength. If only I had a bank of goodwill from which to make withdrawals, to fortify me to be a better person toward one who deserves compassion. He wants me to treat my mother like the mother she would have been if not for this illness, but that mother does not exist in our timeline. I want to forgive too, and if my dad is correct, then there is at once nothing to forgive and yet nothing to draw upon for strength. The mother she would have been is in some other universe, hanging out with the daughter she didn’t ignore.

“Well, she took care of me,” I said, “but I never felt care from her either.”

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Each winter, I go home for Christmas and notice how my mother has lost yet another skill; then I return to New York and try not to think about it anymore. Five years after my last stint in that house, my mother requires full-time care. While caregivers help for a few hours during the day, my dad is now essentially the single father of an ever-regressing toddler. He can’t shower for more than five minutes because of what she might get up to without supervision. When Jess and I hear that our dad is considering a China trip before his ten-year visa expires—his own father has died, and he wants to say goodbye to his family—we seize this opportunity to ease his burden. Let us come home and take care of Mom so you can go on this farewell tour, we say. Let us help you with this, at least.

Somehow, the house is darker than before. Every corner has a cobweb, and the cutting board sports an enormous hole that resembles the knot of an ancient tree. Ants and flies swarm. The dolls live permanently in my parents’ bedroom. Each day, my sister and I discover an object out of place. There’s my tennis shoe alongside a tube of toothpaste on the bathroom counter. There’s a pillow on the gnarled cutting board, under a rack of knives. “Magritte could never,” Jess says.

I studied German literature in college; my sister lived in Germany for a year. I joke that we could curate a photography exhibit called Unheimliches Haus, a “meditation on repetition and a mind in decline” aka the weird shit that our mom moves around. A few days later, an iPhone notification pops up: Jess has started Unheimliches Haus, a shared album. Now the sight of toilet paper pouring like a waterfall and pooling on the bathroom floor makes us rush to add to the collection. A sponge resting among legal pads and textbooks is documented. Look, a newspaper in the dishwasher! Ah, a bag of someone else’s pills that Mom picked up from god-knows-where. We glide from dusty fossilized room to dusty fossilized room, but at least the prospect of curating our exhibit makes us laugh.

At noon, my sister cooks lunch and we eat it with the caregiver.

“She must have been really nice and sweet before she got sick,” the caregiver says one day as we sit at the table. By now, our mother either talks nonsense or tells you to go away and that she hates you. A while back, even our father stopped trying to get us to feel care. He just needs us to keep her from peeing on the floor, a task at which we are only moderately successful.

“No,” I say.

“Her personality was worse before she got sick,” my sister says.

The caregiver tries again.

“Did she take very good care of you two when you were growing up?”

“No,” I say.

“We took care of ourselves,” my sister says.

Everyone wants to offer compassion to the girls who have lost their mother. Nobody wants to hear the story that she was not pleasant and kind before. Nobody wants to hear that the less lucid she is, the easier she is to interact with, because you simply can’t take things personally anymore. I have imposter syndrome caused by other people’s misplaced compassion.

The philosopher P. F. Strawson differentiated between two modes of engaging with others: the objective stance and the reactive stance. The reactive stance brings with it emotions like resentment and blame but also respect for the autonomy and free will of the other. The objective stance is a position of cool detachment. It is the moment of enlightenment for the man who notices that the other boat is empty. It is Unheimliches Haus as a source of amusement instead of agony. I have passed into the objective stance. It’s much nicer here.

I was a negligent older sister, as uninterested in Jess as our mother was in us. In our twenties Jess and I began tentatively talking as equals, but it was the diagnosis that forced us together. Now, when we are confined in the same space for most of every day, our conversations move beyond the drumbeat of family-focused anxiety characteristic of our usual texts. We spend some time trying to think of positive memories of Mom. She must have done so much for us—our entire American existence is due to her stubbornness—yet I can come up with only two recollections. When I was in high school, she occasionally picked me up in the car when I got lazy and didn’t want to walk the couple miles home, and she sometimes made audio recordings of Chinese phrases for me for language class. Jess comes up with one. Mom helped her pick cross-country as a sport.

We talk over dinner, our mom eating real food while we flank her and inhale the wafer cubes called Quadratini. We talk on morning walks, while we bathe her, during the moments we spend begging her to go to the bathroom, in the evenings when we need to do something for her every hour. I feel great swells of gratitude toward my sister, camaraderie in teamwork and the absurd humor of our art project. I feel the desperation of need and relief at the corroboration of a shared past.

Every night, one of us shares the bed with our mom to keep her safe. We set an alarm for 3 a.m. to take her to the bathroom. One week in, I try to coax her, but she fights me and refuses and then pees all over the bedroom floor. I look at those dolls again and imagine twisting their heads off and throwing them out the French doors that lead to the backyard. Exhaustion-fueled fury grows in my chest, but it does not arrive with an eruption of guilt. The anger is purified because nobody wants to clean up pee in the middle of the night. My feelings are acceptable again.

Last time, I was asked to be the crying daughter, free to come and go as I pleased but entreated always to have a place for my mother in my heart. This time, I am asked merely to be the caregiver, little different from the women who come to our house and are paid to do what I do during their off hours. I am physically trapped by my obligations but free in my heart. I will gladly take this trade. I am here, and I am trying to be kind, even if it is the same kindness I would extend to anyone I was obligated to help and not a form of care that grows from a special connection from having once been in her house or in her body.

I am caregiving, but in another sense I do not care. She is a mother, but she didn’t mother.

I clean up the pee with a roll of paper towels and a Swiffer and bring her back to bed, only for her to wake up at 5:45 a.m. and start pacing incessantly. It’s wretched and tiring and yet, yes, still this physical protection is easier to give, yes, I will take this trade.

It was a common refrain from my mother, a middle child: “I never felt loved or good enough. I failed at everything and wasted my life.” This belief could be another explanation for her way of being, in a world without the buildup of amyloid plaques that caused her to stop recognizing me. I will never know how much of my mother’s behavior was “her” and how much was the disease and how much was her family or moving to America or anything else. The answer is not zero—but isn’t that the case also for parents afflicted with addiction, hurt by their own imperfect parents, struggling with anything that makes any of us different, worse, than we might have been? None of us is a pure essence unpolluted by the experiences of this world.

That didn’t keep me from spinning into a realm of endless possibility and con- templating a thousand different versions of my mother, each of them leading to a thousand different versions of me. So long as I played my game and puzzled over how to apportion the exact amount of blame and feel the ethical amount of animosity, I was distracted from facing reality. Reality is not those thousand different versions. Reality is this timeline in which we all exist. Reality is the mother I experienced and the person I became.

I’m a woman in a boat, and I receive a long-delayed report. The boat in the distance could not arrive because at some point, through no fault of its own, it had been anchored by a monstrous weight.

I spend years circling, wondering how much I should trust this news, both attracted to and repelled by what could have been. Then I sail back and see that the other boat is sinking. There is no question; regardless of when the weight might have begun to exert its force, the process is almost finished. The passenger has been punished enough. She can’t even save herself.

She’s so far gone, no longer the woman who raised me, in some ways finally blameless. Yet the past is the same, and I am the same, and my sister confirms the childhood circumstances my father did not acknowledge and that I had been afraid to declare on my own. I can say now: I am a woman in a boat and I am mad. I am mad at the wind—at the forces of reality outside our control—and I am mad at the other passenger. I am mad that I was a child alone in a boat who didn’t get what she needed.

I am angry if it turns out the person in the other boat could have made it but didn’t try. And I am angry even if the other boat could never have defeated the gales.

Every life is steered by an undisclosed combination of the wind and our own manpower. It was futile to wrestle with the probabilities of an imagined past or try to alchemize resentment into a gentler form. The anger itself rarely troubled me; it was the resistance to anger that snagged my mind. When I surrendered, I could finally notice that the rage I so feared had not corrupted me. As a child, I had been unable to separate my mother’s feelings from her expressions of them, and became preoccupied with the necessity of controlling my own feelings lest I also lash out. As an adult, this mistaken obsession with emotional fairness, with inner experience instead of action, made me fail to look around and see: There’s wind pushing me too, but I am still trying. When I chose to take care of my mother, I was sailing against its force.