by Laura Lee
We buy fresh chickpeas and shell them, sauté them in spices, collaborating and taking turns as we cook. Certain things I’ve learned over time—how to layer flavors, and which flavors I love. I’ve introduced her to kaffir lime leaf, something I add in thin strips to pancakes, or use to season fish or shrimp or soup.
She cooks with ginger-garlic paste, an ingredient I’ve never used for its negative associations. For a bit my mother kept large plastic jars of minced garlic on hand; she never learned to cook the rawness out of it, used it only as a shortcut for dishes she didn’t want to cook and didn’t derive joy from—which translated to largely raw or burnt, inedible food. Now I learn to appreciate those ingredients anew.
I’m learning how little I know of spices and blends. I knew before to begin cooking by tempering spices in warmed oil—this technique is common in Italian and South Asian cuisine. I’ve learned from her to finish dishes by pouring over tarka—the oil slick in which aromatics like garlic, ginger, and red chili have been sautéed. I’ve urged her to salt every addition to a pan as she goes, to coax more flavor from what we do agree to use.
Garam masala has always intimidated me—I still don’t know what, exactly, is in it. Pot roast was a totally foreign concept when I first started cooking it. Now I update the all-American pot roast I used to make with my midwestern ex-boyfriend, as we cook together out of a slow cooker in a summer basement rental in Chicago. This new version of pot roast, in which garam masala and dried chilis replace oregano and rosemary, cinnamon-y from the masala and sweet from cubed sweet potatoes, tastes like the dish I’ve wanted all along, without knowing it.
I take a chance on nostalgia one day. For her, mangos are something she rarely buys here, because they fall so short of Pakistani mangos. I understand. So often when I palm mangos in grocery stores here, whether hard or puckered, they smell of nothing. After watching other customers buy cans of mango pulp at Patel Brothers, I purchase the same, despite her skepticism. I open the can, sniff the sweet, fruity ripeness, and know I’ve won.
“Ooh, that’s a mango from back home!” she says. “That’s what real mango smells like.” We make mango lassi by mixing the pulp with Greek yogurt, drink it greedily, glad for the discovery.
We grab a quick meal in a Korean grocery store, too. You learn more of what others might like to eat by going to grocery stores than restaurants—that’s where you’ll find the ingredients of home cooking: the fruits and vegetables, the grains, the snacks. As I excitedly share foods with which I do have positive associations—yellow Korean melon, Japanese Botan candy—I realize the dishes we’ve shared before haven’t been Korean or East Asian. It’s exciting that we have more to share, more to explore.
She knows I value food—that I couldn’t date someone who doesn’t appreciate flavor, in all its manifestations. She’s the same way. She knows I can cook only a few Korean recipes I’ve taught myself. She’s able to tease me because she knows me as an individual, and because even though our cultural inheritances are separate, they’re still somehow linked. We’re able to tease each other.
9 POETRY OF THE WORLD
These days I carry with me a purple crystal necklace, handmade. The man who gave it to me reminds me of a character out of an Agnès Varda film, always foraging and collecting. He buys cashews in fifty-pound increments, fills his rusted white pickup with dumpster-dive hauls. Morels, bike frames, it’s all the same.
A world traveler told me once that he kept everything others gave him, for good luck and safe passage. I understand. I carry the black string with me as a talisman, of sorts. It was innocently given, with no expectations attached. Such generosity is rare.
* * *
“Why would I ever go back?” my mother used to say, about returning to Korea. Now she’s in a nursing home, a train ride away from Seoul. I’ve asked my oldest sister, a decade older than me, for details, so I can picture it: what sorts of food she eats, what it looks like. I learn only that it doesn’t smell of hospital stink, the way nursing homes do here.
I haven’t been to Korea in decades, since I was ten. The country is an abstraction to me. My mother’s illness has spanned nearly the same length of time. Her illness is not an abstraction to me. Its various manifestations have dominated most of my life.
“You’ll regret it,” my oldest sister told me, about not returning to my childhood home before my mother departed for Korea. “You’ll regret not seeing her.”
The truth is, I didn’t. I don’t.
Our current chain of communication is confusing, stilted. My father, returned in recent years from Korea to Colorado, speaks with my oldest sister in New York, who sends emails to my middle sister, three years older than me, and myself.
He gets updates from Gomo, his sister in Korea, with whom he’s had strained relations, but who treks to visit my mother anyway. Gomo’s kindness has been variously attributed to religiosity, genuine goodness, or Korean familial values. Any or all could be true. I met Gomo decades ago, just as I did the rest of my extended family. I can’t even remember her face.
* * *
Nearly as soon as my mother arrived, she contracted aspiration pneumonia, caused from breathing in liquids and particles of food. Pneumonia is common in Alzheimer’s patients. In the later stages, the body begins to give out. Certain symptoms are disturbing. They’re graphic. The regression mimics a return to infancy, as certain reflexes return: the sucking reflex, and the Babinksi reflex, involving the feet’s reaction to touch. Limb rigidity, when one’s arm and hand become fixed in a claw-like position, is the one I most dreaded. These are the visceral manifestations of a slow death.
The hospital treated her for pneumonia and then, to our delayed surprise, placed a feeding tube. After she was returned to her nursing home, my mother pulled out the tube herself.
This act fits with her personality, or the bits unaffected by illness, anyway. She has always been stubborn and strong-willed. It was this determination that saw her rejecting traditional gender roles of her generation and country, in favor of a career—staying up to study by candlelight; programming the first computers in Korea via 0-1 punch cards, on modules the size of a room; relocating to the cornfields of the U.S. to further her education. Later it was this same stubbornness that saw her refusing to leave her job as a tenured professor in Colorado, insisting to my father and oldest sister her mental competency was fine, even as the university that employed her forced her into retirement.
This act fits with the profile of an Alzheimer’s patient, too, who responds to medical intervention with confusion. Parsing my mother’s personality aside from her illness is similar to sorting seeds from grains. The task is nearly impossible. They overlap.
Now we face decisions anew. The hospital wants to reinsert the feeding tube. If we say no, they will feed her thickened liquids instead, but they won’t treat any further instances of pneumonia. They will withhold care.
Relocating my mother back to Korea went against her express wishes. We debated for years. I don’t even remember, anymore, what I once believed was right. My arguments ceased mattering. My father, who’d been absent for most of my life, had returned. I was no longer the decision maker. At one point, once the decision was made, I offered to relocate my mother to Korea myself. My father wasn’t ready to see her go.
This fight might be easier. My sisters and I are unified in our belief that my mother would not want her life artificially prolonged, that she would not want unnecessary medical intervention. My father will most likely feel the same. This stance is medically endorsed here in the U.S., as a way of reducing patient suffering.
Having such certainty doesn’t render the situation less painful—that we’ve arrived at this juncture, in which the decisions we make dictate how my mother will die. We’ve reached a new low of lows.
* * *
I had a child’s belief, once, that if I could make my mother smile and laugh, if I could solve some of her worries, then she would get better. She hadn’t been diagnosed t
hen.
She had her yellow sticky notes scattered everywhere, little bits of mind and memory committed to ink. She had the articles she clipped back when papers were delivered in print alone, the ones she highlighted for their information on Alzheimer’s and gathered into bundles.
“What’s wrong with me? Am I going crazy?” my mother asked me in near-constant refrain, sometimes mourning mistakes she’d made, sometimes simply expressing her angst.
Even as others often explicitly told her she was too young to have the disease, including doctors, she feared she was developing it. She never received confirmation before it was too late.
I fought for her happiness. The more I gave, the more she took. The more she required.
She had the times when, as a child, I would find her crouched in her master bedroom closet, thick brown carpet as backdrop, crying with such intensity that I wondered if she might cause herself serious harm.
Later, in my teenage years, she took to pacing the basement, carrying on lengthy conversations with her brother who wasn’t there, rearranging her massive piles of toilet paper for comfort. At times she hoarded paper and other goods, which I periodically gathered for donation before she began rebuilding her supply. At times she purged, throwing out treasured belongings that couldn’t be reclaimed.
“We’re going to miss trash day!” she said urgently, angrily one day, a few months after I graduated college, when I’d flown home to file her Social Security benefits, as she scooped up garbage in armfuls from our kitchen trash can and carried it out to the front sidewalk, wild look in her eyes. I quickly realized I had better get out of her way. She had times when standing in the way of her obsessions meant facing physical harm. No obstacle would prevent her from getting that garbage to where she felt it belonged.
Always she had times when she was angry and scared, when she stormed in to wake me with her worst fears in the middle of the night, hoping I could solve them. When she pleaded for help. When the entire house was rocked by her tremors.
* * *
The first six stages of Alzheimer’s encompass psychological torment, the pain of which I witnessed without understanding its cause. Growing up I took care of the practical. I did this mainly because the emotional takes too great a toll. Because witnessing my mother’s decline, and being helpless in front of it, devastated.
As a teenager I managed her finances. Refiled her taxes, corrected errors in her mortgage refinance. Paid the bills, set up installment plans for my middle sister’s tuition. Drove her when she didn’t want to drive. Did household maintenance and tasks. In college I rebalanced her retirement accounts. Put together spreadsheet after spreadsheet, researched meticulously, when she needed help she couldn’t request and I couldn’t provide.
I took her worries and fears as my own. I lived with her lack of boundaries, with physical discomfort as she encroached on my body and my space. I still question—was it okay she did this thing, or that? Was that natural? Was that normal? Was that wrong? Some things I never speak of. Her shame is my own.
I missed most, but not all, of the seventh stage, in which physical degeneration takes primacy. This final stage is broken down into even more substeps, in which patients lose the ability to speak, use the toilet, and walk; to sit up, hold up their heads, smile, to swallow.
I wasn’t willing to change her adult diapers. I wasn’t willing to bathe her. I wasn’t willing to keep having avoidable emergencies thrust upon me, by those who hadn’t listened or granted assistance in caretaking when I needed it, who didn’t help enact methods of prevention for those emergencies, who hadn’t even believed she was ill until the proof was undeniable. I wasn’t willing to keep losing myself in grief. My mother’s decline isn’t something I can recount, in every agonizing detail. To do so would cost too much. I did what I could, for as long as I could.
So much of my life I thought only in terms of what my mother wanted or needed of me, rather than what I wanted or needed for myself. I served as a vessel for my mother’s desires, rather than as a creature of my own.
The best thing I did was finally to say no, to anger and guilt and invocation of duty, and to persist in saying it. The best thing I did was say yes, to taking those first steps toward carving a space for myself.
* * *
I’ve watched my oldest sister grapple with some of the same emotions I faced. I’ve seen that same letting go, in which she sends photographs of green sunflower seedlings in their small burlap sack on her windowsill and talks of new growth. I can’t speak for her journey, can only observe it. Grief is personal and private. We’ve lashed out along the way. We’ve found peace, too.
My mother had a similar trajectory. She had her days when she was plagued by doubts. She had her days when she lashed out. And then, too, she arrived, finally, eventually, at some sort of peace. When she sat docilely as I made her a simple dinner of chopped zucchini and yellow squash, white rice, and seasoned ground beef. When she happily ate leaf after leaf of dried seaweed, covered in sesame oil and sprinkled with salt. When horror at life’s possibilities had ceded, when recognition itself passed, replaced by the carnal pleasures of the everyday.
My father used to grow angry with my mother for eating entire packets of what’s meant to be eaten only as a vehicle for conveying rice, vegetables, and meat. After he became her caretaker, he was simply happy when she ate.
* * *
I know now what I didn’t know then: that the disease lasts long enough to exhaust us all of caretaking. Of loss. No one can withstand the strain alone. No one should have to. It’s not the effort that’s so defeating. It’s the inevitability of the outcome.
Early-onset Alzheimer’s demands surrender. The disease doesn’t leap up; it grinds you down slowly. The sadness you’re left with is more depression than shock. Whether for sufferer or bystander, the disease seems an endless process of remembering, resisting, and finally letting go.
I write from a primitive campsite I’ve returned to many times. In the weeks since I last visited someone has fashioned a crude bench, a wet plank balanced on two flat stones. The campsite is, in this way, improved. Litter fills the fire ring—an empty glass bottle, and an empty can of beer. Large insects fling themselves toward my headlamp’s illuminations as I type, buzzing against netting. A few find their way in, to rub their slender torsos against the light. A creature screams wild cacklings from the trees, in the dimly lit night. No other parties are here. The stream trickles, as it always does. The air is humid, as usual.
Sometimes the hardest thing is to do nothing. That I didn’t return before she left doesn’t undercut the ache I feel in being so physically far away, as she approaches death. I can’t attach poetic imagery to something that is so brutally unornamented and real. I can only look outward, at the poetry in the rest of the world.
10 WANT
Part One
My life felt like it truly began after I moved to New York City for college. In the city’s controlled chaos I could get lost, be anonymous. For the first time I felt I fit in.
I made friends who didn’t treat me as a cultural outsider, who weren’t white. Many were Asian-American. Those of us not raised on the East Coast bonded over having never had Asian-American friends before. Nearly all were well-off business-school kids, culturally conservative in comparison to writer or climber freaks. Nearly all came from tightly knit communities.
I didn’t come from similar wealth, though I became accustomed to rubbing shoulders with it. I was a scholarship kid, one raised on the quiet, open expanses of the West.
My mother had taught me how to take care of her, but she’d taught me next to none of the things most learned from their mothers. I’d paid little attention to what I wanted for myself.
My friends helped me learn the most basic of things—how to dress, how to be. They took pity on the feral creature I was. I was utterly oblivious. I’d shut off so much of myself emotionally, built myself into something hard and strong. Underneath that armor was a well of sensitiv
ity and vulnerability.
I fumbled when it came to the most basic of questions, because for so long, I’d sought to appease those around me. I’d been in reactive mode since I was a child, and unlearning that has never truly stopped. I made all sorts of mistakes, but they were mine to make.
Once I suggested meeting a friend at a bar in the Village because its location was convenient. I’d been there once before, when I’d met a group of acquaintances for a live music show. On the night I met my friend—my conservative, Christian, Asian-American friend—something seemed different.
A few minutes after showing up I excused myself to the bathroom, which was crowded with women talking about girlfriend drama. In my absence a woman at the bar struck up a conversation with my friend by saying something along the lines of “Is she not treating you right?”
After I returned, as I waited for my friend to wrap up what seemed a random friendly conversation, I chatted with an Australian tourist, a man I later realized was the only one in sight. It was only once she extricated herself and I mentioned the bathroom gossip that we realized something different was swirling around us. We were in a lesbian bar.
“I could never date a woman,” she said, looking disgusted. She’d often been mistaken as gay despite being entirely boy-obsessed, something she ascribed to her “athletic” build, square-shouldered and lean. “What about you?”