What I Heard When My Mother Was Dying
A personal essay about misophonia, grief, and the final hours of Mother’s Day, when the easy tributes are over and the complicated mothers remain.
This essay first appeared in Orange Blossom Review, Issue 15.
On Saturday morning I make breakfast for my toddler, set cloth napkins on the table, and put my noise-canceling headphones on. My husband sits next to me and sips his coffee. My three-year-old plops spoonfuls of oatmeal into her mouth. Río, our 12-year-old Anatolian shepherd, smacks his lips in anticipation of crumbs.
Without the headphones, I’d be screaming.
At lunchtime, I sit as far away from my husband as possible. He crunches tortilla chips and moistly licks salsa from his fingers. Our chihuahua, Isa, munches on bits of food that fall to the floor. On the other side of the room, I put on my headphones and try not to lash out.
I suffer from misophonia, a rare and little-understood disorder that causes intense feelings of rage or disgust in response to certain trigger sounds. I can be calmly enjoying a cup of coffee in a quiet cafe when the sound of gum-chewing one table over causes me to explode. In fact, quiet is usually the problem. I need background noise to drown out the ubiquitous mouth sounds that follow me from my bathroom sink to my neighborhood coffee shop to my best friend’s couch. It only takes something small for me to lose control of my emotions. I am so used to this constant precariousness that it is hard for me to remember that other people don’t even notice these sounds, or live their lives this way. I feel like a stack of China plates, perpetually balanced on the edge of the table.
Hours after lunch, my husband and I settle into our seats at the movie theater. We have finally planned a date night. He knows not to buy popcorn, but the stranger next to me didn’t get the memo. That guy shovels buttery fistfuls into his mouth, just inches from my ear. His molars do a number on the noisy kernels.
The noise is like a plane crash inside my skull, and all I can hear or think about. My back tenses. My pulse quickens. I’m approaching another outburst of mindless rage when my husband switches seats with me.
We finally make it home, where my in-laws are on the couch after an evening of babysitting. My father-in-law slurps up the last of his sparkling water and a few wayward drops run down his chin. I want to feel grateful for an evening of free childcare; to be relaxed after a much-needed night out, and feel happy, satisfied, and unhurried.
But these sounds, which would go unnoticed by almost anyone else, are scrambling my brain and playing havoc with my impulse control. I’m enraged and disgusted and on the verge of smacking my husband’s sweet father across the face.
In these moments I know what my mother told me was right: I’m rude, I’m controlling, I’m volatile and over-reactive. I’m not fit for company.
My mother and I grew up with the worst parts of each other, and some of them linger.
***
I always hated going out to eat with my mother, whose 350 pounds were sheathed in billowing floral moo-moos. But growing up it was the only court-approved way to see her during the school week.
Each Wednesday night, she drove to my father’s house to take my sister and I out to dinner. She didn’t make much money as a registered nurse, so our choices were limited to fast food restaurants.
My sister and I shared the decision of where we would go each week, and I had it all mapped out. Taco Bell had good spices in their meat, but soggy shells. Wendy’s burgers were boring, but their fries were the best: Hot, thick, and crispy, just as the commercial promised. Burger King had what we considered fancy sesame seed buns. And McDonald’s food was terrible, even to a teenager, but I always wanted to play the Monopoly game on the super-sized drinks.
My mother hated the nights we chose Taco Bueno, a Tex-Mex chain which served bastardized Mexican food. My sister and I wanted the same thing every time: “MexiDips ’n Chips, no lettuce, no beans, extra queso.” It was nothing but an oversized platter of chips, cheese, and guacamole—our favorite.
My mother would scold us: “Girls, you need to eat healthy for dinner. Come on! Let’s go across the street and order pizza.”
“Mom, pizza and nachos are the same thing.”
“No, Kelsey. Pizza has vegetables.”
It seems funny now, but my mom was serious.
A rare photograph of my mother and I in which both of us appear to be telling the truth.
Wherever we ended up, my mother would slip into a trance while eating, whether it was tortilla chips dripping with queso – the viscous, highly processed cheese sauce which is ubiquitous in Texas – or a french fry slathered in ketchup. Though she was never particularly talkative, she normally made an effort to ask about our lives. But when junk food was on the table, she became mute, so intensely focused as to almost be absent.
All my adolescent rage would zero in on her mechanical chewing. She smacked, she crunched, she swallowed loudly. And my blood boiled. I don’t know how many times I commanded her, “stop smacking!” or “stop crunching!” during each meal.
She cowered across the faux wood tabletop while I seethed, awash in teenage bitterness.
In time, she and my sister would learn to roll their eyes and shame me for these outbursts.
They’d laugh in my face at the absurdity.
Towards the end of high school, I remember sitting outside my father’s house, wondering what was taking her so long to pick me up. When she finally arrived, I asked: “Mom? Where were you?”
She looked away, started to speak, then stopped herself. “What?!” I demanded.
“Just a minute, Kelsey!” she said harshly, then paused. “It’s hard to say . . .”
Finally, she burst into tears and admitted she’d stopped so many times to buy candy bars that it made her late.
In a single year my mother was diagnosed with breast cancer, had her thyroid removed for fear of more cancer, discovered she had congestive heart failure as well as diabetes, and was hit with a bronchial super-virus unresponsive to pharmaceuticals.
Growing up, I often feared that she was going to suddenly die. But mostly I was just embarrassed: by her constant sweating, her flaming red cheeks, and the way her double chin jiggled when she laughed. I was embarrassed by her awkward questions, her meek attitude, and her perpetual discomfort. She took a high dose of lithium for most of her life, which steadied her mania and suicidal tendencies but made her hands shake and her mind foggy.
I hated introducing her to my well-off friends from the suburban high school I attended in my father’s neighborhood. They were children of doctors, lawyers, hospital administrators and company executives. I remember my mother stepping inside my friend’s million-dollar home and staring up at the second floor balcony. When my friend stepped away, she leaned over my shoulder and said, “does she know, Kelsey?”
I stared back at her, puzzled.
“I mean, did you tell her? Tell her family why I can’t take care of you. Tell them about my mental illness.”
It took twenty years of therapy to connect my lifelong misophonia to the feelings of anger, fear and abandonment that characterized my relationship with my mother.
***
There’s a photo of my mother that hangs on the bulletin board above my desk.
It was taken outdoors in the middle of a North Texas summer, and her brow is beaded with sweat. She sits in a chair that’s too small, wearing dirty overalls, visibly uncomfortable as the denim stretches against her belly. Nonetheless, the shade from the fireworks stand perfectly covers her body, and her wild graying hair is tamed by a red bandana. Through enormous, dark-rimmed glasses, over the fatty hump of her stomach, she reads the pages of a worn book.
We spent many summers in her home in Azle—a poor country town full of meth-heads, pecan trees and rusty mobile homes— where fireworks is an easy business. My sister and I hauled boxes of Black Cats and artillery shells in the heat, and rebuffed the leering drunks. My mother supervised. In her late 40s and obese, she didn’t do much physical labor. She mostly chatted with customers and restocked shelves.
On her breaks, she would often pull a chair beneath the shade of the stand’s wooden flaps and guzzle ice water while consuming her latest paperback.
The fireworks stand and accompanying trailer home were owned by Ben, her partner. Or boyfriend? I never knew what to call the man she lived with for over 20 years while he was still technically married to his first wife. He usually left town when we came to visit my mother on her court-approved weekends. When he was around, he liked to joke about taking off his belt when we refused to comply with my mother’s instructions. We hardly knew him, but became accustomed to his wife (whom we thought was his sister) leaving long, rambling messages on my mother’s answering machine.
I learned many years later that she had suffered brain damage in her early twenties after being hit by a speeding vehicle. Ben stayed married to her out of a sense of obligation, and my mother, the nurse, helped take care of her.
Though my own mother and father were married for fourteen years, I could never picture them together. Their lives were so different.
My parents on their wedding day, bravely embarking on what would become fourteen miserable years of marriage.
My mother’s life was one of progressivism, poverty and a sincere dedication to others. She brought home injured animals and stitched up wounds on children’s foreheads. She campaigned for city council candidates. She planted mint gardens and banana trees.
My father, on the other hand, was successful in the corporate world in that way tall white men can be — predictably. He drove expensive cars, played video games on a 65” TV and had a habit of calling me “shit for brains.” I never saw him read a book or water a plant, though he did have a framed photo of George W. Bush on the mantle. It’s no wonder my parents divorced shortly after I turned five.
A few months after my parents separated, my mother ingested a near-lethal dose of codeine. As far as I know, she was dating Ben and had recently been granted custody of my sister and me. Distraught at how she would manage to drive us both to school and also get to work on time, she succumbed to suicidal ideations.
I remember the horror of walking up to my mother’s apartment door, one hand clinging to my two-year-old sister and the other to my towering father. I can still see the handwritten note taped to the peephole. My father’s chest heaved and then he collapsed in tears — one of the only times in my life I saw him cry.
His balled fist banged on the neighbor’s door. A tense conversation, a portable phone, and then a long walk to the pond with a neighbor I’d never met.
The lights from the ambulance danced at the crest of the hill, and I wanted to run. My toddler sister chased ducks while I ate Goldfish — my brightest memory from that day. Crunchy golden crackers in my tiny, open palm. After that, I only saw my mother during occasional visits to a psychiatric ward.
This was not her first attempt.
She told me about the first time when I was in high school, in an old minivan barreling down the highway. She was twenty-five years old, she said, married but childless, and working in the ICU. With people dying all around her, she said she couldn’t handle the stress.
“So what did you do?” I asked.
“I stole a bunch of paralytics, the drugs they give patients in surgeries, and drove out to a park bench. I don’t know, honey, in Decatur somewhere.”
After many hours of lying unconscious in a public park, she said she woke up. With no more drugs to take, and a body reeling from the aftermath, she went to the local ER.
I have to wonder if my father was surprised when it happened, again, or if he expected it. My mother told me that she had been depressed since they met in their high school marching band. My father didn’t talk about such things, of course. He hardly talked at all.
For many months, we visited my mother in an industrial cafeteria on the bottom floor of a hospital. The court mandated that my sister and I live with my father. My mother agreed. She told me she wanted to be “the best part-time parent” she could, yet she never had time for rides to and from school. There was no space for us to sleep in her home. She always answered our frantic phone calls whenever our father went into one of his violent rages, but never felt the need to spare us from them all together.
My father’s drug of choice was always rage. He pushed us into walls, pinned us against the kitchen counter, yelled and screamed and threw things. I never saw him have more than a drink or two, but at least once a week he would terrorize us with insults and sudden violence. This was one of the reasons that we were always ready to go to mom’s house, even if it wasn’t ideal.
Thankfully, my mother loved books. Her extra bedroom was full of them. She had shelves of Toni Morrison, Barbara Kingsolver, and endless piles of National Geographics. When it wasn’t the peak of fireworks season, my mother worked long shifts at a family clinic over an hour away. My sister and I spent long summer days alone in her trailer, braving spiderwebs and piles of cat shit to get to those books.
I didn’t recognize it at the time, but the calm of reading was a silent retreat for a traumatized child in the early stages of misophonia. I could bury myself in a novel while the police sirens wailed after a murder at the barbeque joint across the street. Drug addicts wouldn’t bother me with their inane requests to barter refrigerator motors for fireworks. I could distract myself from the dead chickens and injured cats that often littered my mother’s front yard. Plus I could distance myself from my ineffectual mother and her increasing catalog of illnesses.
***
The call I’d been fearing since childhood finally came a few years after I finished graduate school.
My mother and I talked rarely by then, just a few times a year, and we almost never saw each other. I know she had started using a cane because she warned me shortly after graduation “not to be embarrassed” when she pulled out a walking stick.
In response, I furiously berated her for assuming my reaction would be shame instead of concern for her health. It seems she was fully aware of all my adolescent humiliation and unease, and I had not hidden it as well as I thought.
She assumed I would be embarrassed by her. And frankly, I usually was.
At the age of 60, my mother inhabited the body of someone much older. Though she had survived breast cancer and took an odd pleasure from pulling her shirt down and showing her scar to strangers, she was suffering. Her sciatic nerve was fried from radiofrequency treatment, and she drifted off and on her antidepressant meds. In addition to suffering from a litany of obesity-related diseases, she fell and sustained a serious concussion in her front yard. It was hours before the neighbors found her.
The circumstances around her next, and final, overdose are unclear.
By this stage she was managing many, many medications on her own. Her bedroom was stacked with dozens and dozens of pill bottles. At the time doctors couldn’t explain her condition, but I’ve since learned that she likely suffered from an overdose of Lithium — the antidepressant drug that had kept her bipolar disorder and suicidal tendencies at bay for decades.
In her concussion-induced haze, did she accidentally take too many pills in one sitting? Was her death caused by disorientation and misfortune? Or was this another intentional overdose? I’m not sure I’ll ever know the answers, but I am certain that many of my still-living family members will resent the questions.
My sister called and told me Mom had maybe 24 hours to live.
By the time I reached her bedside, she was in a coma and unable to breathe on her own. Though it was hard to see at the time, I’m grateful that the emotional and physical distance I had created between us allowed me to let go of some of the childhood heartbreak, and love her again at the end.
Hospice proceedings had begun, and an incongruously cheerful nurse administered hourly morphine injections in my mother’s low-income, county-funded hospital room. The tick of the machines was deafening and amidst the sorrow, the familiar fury of my misophonia surged.
As I left my house for the hospital, I grabbed something my mother had given me twelve years earlier during college. I had been leaving the country for the first time to spend a semester on an exchange program in West Africa. Through signature red cheeks and muffled sobs in the airport parking lot, she handed me an anthology of Pablo Neruda poems with the inscription:
“Kelsey Erin, I bought both of us this wonderful book of poems. When I read from it, I will think of you, and hopefully you will think of me. This will be a tangible link just between us; not just while you are in Ghana, but wherever we find ourselves in life.”
In the last hours of my mother’s life, I sat by her bedside, caressed her hand, and read to her from the book.
Everything except the poetry was too loud — the chaotic machines; the gurgling as her lungs filled with fluid; frantic discussions outside in the hallway; a portable radio blaring gravelly music. The overwhelming noise threatened to swamp me in inappropriate misophonia-fueled emotions: Rage, frustration, repulsion, and the deep pain of witnessing the end of my mother’s life.
Eventually, her breathing slowed. I prepared to say goodbye to her: The woman who read to me throughout my childhood; the woman who left me; the woman who tried and failed. The woman who loved me as she could. The woman who embarrassed and infuriated me. The woman who tried to change me. The woman who read my poems and came to my plays and listened to me cry after breakups. The woman I didn’t choose, and at times hated, but found a way to love again.
At the sound of her last, spastic gasps, I opened the book and read the last lines of “Keeping Quiet.”
“Now I will count to twelve and you keep quiet and I’ll go.”
***
I missed my mother’s funeral after my family moved the date at the last minute and I couldn’t get away from a new job. I felt guilty, of course. So for years, I kept a photo of her headstone on my fridge. I brought my newborn daughter to the cemetery and took smiling photos beside the family plot in 104-degree heat. I brought my dog to her gravesite, where he promptly slipped his collar, ran wild through the cemetery, and peed on fresh bouquets of flowers. Grief is strange.
It’s seven years later now, as I sit at the breakfast table with a husband and daughter of my own. I press the headphones tightly to my ears as she knocks her plastic cup of milk onto the tiled floor. It makes an apocalyptic noise, like the sound of dams bursting, bridges collapsing, which sears the nerves up and down my spine.
I’m old enough, now, to wonder about the noises in my mother’s head. And also to wonder whether, when the time comes, my daughter will be able to forgive me, too.
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May 11: I have one more spot open for book proposal consultations this month, in case your nonfiction book a needs a little structure, strategy, or loving-but-firm editorial attention.
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Thanks for being here.
My heart aches for you after reading this, and yet blown away by the courage to face the inevitable when it happened with beauty and Grace. As adults my hope is that we can embrace the flaws, imperfections and limitations for those that raised us and can be at peace. Happy Mother’s Day.
Wow. This was compelling and so sad and smart and forgiving all at once. Every daughter and mother should read it. Thanks for being brave enough to write it.