The remnants of my mother’s life fit neatly into the corner of a walk-in closet. They’re a modest inventory: five-mini cassettes, thirty-plus photo albums, a jewelry box containing a frustrated tangle of 14 karat gold chains and tennis bracelets, a couple of high school yearbooks, some salvaged Christmas ornaments and snow globes, a slim black book of poetry, a fat grey Day Planner containing doctor’s appointments, an assortment of sad crafts (broken handmade earrings, sloppily decoupaged boxes, glitter glued cards) intended for friends, neighbors, doctors, nurses, teachers, and anyone else she felt needed a token of appreciation. Her five journals take up the most psychic space. They are of varying size, length and legibility, detailing her struggles with illness, her reckoning with her own mortality, and her preoccupation with her weight and appearance. Her trembling hand haunts the page, the blue cursive snaking like veins into indecipherable patterns when she’s exhausted or overly medicated. Her thoughts on life, family, love and memory echo in the mind of the reader, her only reader. Me.
These are the words responsible for my mother’s death: Multiple Sclerosis, Rheumatoid Arthritis, Superior Venacava Syndrome, Adult Respiratory Distress Syndrome, and von Willebrand disease. Most of these diseases reside in the blood. From the time of my mother’s pregnancies, blood was a portent of death. When I was born, her blood was stubborn, forming into thick and dangerous clots. During my younger brother’s delivery, her blood gushed steadily, warranting a transfusion.
On every birthday, she would relish in telling the story of how we were born. For my brother and I, the ending was the same: “We almost died, but we didn’t. We’re too strong. We’ve always been fighters.”
In the summer of 1994, my mother died at age 40 in a small, nondescript room in the Intensive Care Unit of a Florida hospital. It was not a surprise. I’d been preparing to mourn the inevitable loss of her throughout my childhood. At 13, I was a model of stoicism and took the news wordlessly. I forced a few tears but felt nothing. My father stumbled through his choked explanation of life support and hard choices and DNR and gone, gone, gone. She was gone. I felt my feet not touching the carpet, awkwardly suspended while sitting on the edge of my grandmother’s guest bed as my father rambled on. The mattress trembled with the sounds of my brother’s sobs. And yet, there was silence. It was coming from inside me. I put my ear to it and kept it there. My body was a hard and scrawny shell, echoing the sounds of its own emptiness.
“I’m terminally ill,” my mother explained one summer afternoon in 1991. She’d recently returned from her first, but not last, stint in the Intensive Care Unit.
In April of that year, she was admitted to the local hospital for a hysterectomy, a relatively routine surgery. As she recovered, the mood in her hospital room was buoyant and light-hearted. No big deal. They’d removed her womb and soon she’d return home to us.
“Mom is singing us a tune,” I’d playfully observed while we gathered at her bedside with mylar balloons and fast food. But mom was not singing, she was desperately trying to breathe. A tracheotomy was immediately performed, a hole punctured through her windpipe. She couldn’t speak. Then, she slipped into a coma. We all feared she wouldn’t return.
Now, she felt the need to explain, but we already knew that sickness was the fifth member of our household. “Terminal means there’s no cure. It means I’m not going to get better.” She was fond of imparting the meaning of words to us from an early age, building our nascent vocabularies with words that held significance in our daily lives: “bedridden,” “Dilaudid,” “hospice,” “Demerol,” and, now, “terminal.”
I picture her holding the hole in her throat to muster a faint whisper. Her skin is sallow and ballooned, an expanse of bruised flesh obscuring the pretty face of the mother we’d known at school plays and on beach vacations. The room smells like moist skin and iodine. My younger brother, Justin, and I stand dutifully at our mother’s bedside, nodding politely while her eyes open and close, her words drifting and then returning like the waves we splashed in during better days. The hiss of the oxygen tank marks time. We stand, hovering, watching the rise and fall of her faded seafoam green comforter until we know she’s finished her last thought. We return to our rooms to play.
I envisioned my mother’s funeral often as a kid. What I came up with lacked imagination: black outfits, rain, somber faces. I’d force myself to stay in this moment, to rehearse mourning her absence from my life. I would hysterically cry in the black dress I wore during the Spelling Bee finals. Mom loved that dress. I would put my arms around my brother as he sobbed. For once, he would need me. And there were all the others whose lives she touched. They looked at the casket lowered into the ground, faces drawn, eyes tiny pools of sincere emotion. They were so sad, too.
I closed my eyes, trying to hit the rocky bottom of devastation, the dark pit of despair, digging deep for the incredible pain that would accompany my mother’s death and allow me to put it into incredibly affecting words. I clenched my fists, curled my toes, and tried to enter that nadir of unexplored misery. But I couldn’t will myself to feel differently, especially when she sat in the passenger seat in front of me as we drove to Dr. Greenberg’s office, whizzing by palm-lined curbs and commercial buildings the color of sunrises. Her face confronting me in the rear-view mirror, wan but beautiful, Liz Clairborne sunglasses and brick-red pout. I’d give up and stare out the window, exhausted by this morbid exercise. I sucked at imaginary grieving.
I thought I would only grieve for what was: the loving notes in lunch boxes, the impromptu living room dance parties, and the cool, gentle hand stroking my hair when my stomach hurt or my heart ached. Instead, I grieved for what was never to be. I would never know my mother as I would if she’d lived and grayed and grew to view me as an equal. I was too young when she died to understand her apart from her static role in my life as “Mom” with all of its accompanying stereotypical domestic tasks that she desperately tried to perform despite being unable to walk, to breathe without oxygen, to move without pain.
After she died, I tried to forget her. There was something to be said for moving on, for jettisoning the past and breezing through tragedy with fortitude. In high school, I buried my head in books and the heavy bend of boys’ arms who wanted to take care of me, who saw me as both wounded and strong. In the back of my closet, the journals and other keepsakes remained untouched while, in bed, I oscillated between feverishly writing poetry and fucking the first loves of my life.
When I left for college in 1999, I left all of her belongings in my father’s care. I knew neither he nor my brother would rummage through them. They were as adept at avoiding the past as I was. I didn’t want to bring any tangible reminders of her with me. It was her words in the pages of those journals I feared the most. My mother was a lover of words. She was an avid reader and had the unspoken hope of one day writing what she called “The Good American Novel.” She was a witty conversationalist, but an even better writer. She filled greeting cards and thank you notes with beautiful prose that could inspire or comfort an ailing neighbor, a depressed friend. Her words had the power to heal or to scar. There were times she could crudely rip you open with one phrase and then carefully sew you up with another, leaving you to wonder what vital parts of yourself were removed in the process.
Using words artfully was how I sought my mother’s attention, garnered her praise, and reassured myself of her love. I slipped letter after letter in my sprawling Crayola hand under her bedroom door apologizing for any wrongdoings that were met with condemnation, easily detected in her impatient sighs and gritted teeth. But I could repair with words, I could impress with my rudimentary handle on language. Words bridged distances. Words resulted in conciliatory morning hugs and a welcomed shift in perspective: Mommy did love me after all. Words were damage control.
I’d fold my construction paper messages of contrition into fours and carefully print: To Mom, or Mums, or Mommy. Love, Your Loving Daughter, or Jilly, or Jillian. I’d tiptoe to her bedroom door while she took a migraine-induced nap, slide it into the dark crack, and pray my words would bring out the light in her again. I was usually successful. Whatever spilled out of my mouth or onto the floor, I’d later clean up with simple but heartfelt sentences.
Ten years ago, I read my mother’s journals in their entirety for the first time. It was an unremarkable occasion. On a rare visit to my father’s home in Florida, I gathered them up along with other childhood mementoes, stuffing them into my suitcase. Once back in my Brooklyn apartment, I read one after the other. Life rarely unfolds like poetry. The act of reading my mother’s words was not revelatory. It was not traumatic or necessarily cathartic. Rather, it was the return to a familiar place that I could now see for what it truly was. Like returning to your childhood home and having the humble realization that it’s much smaller and plainer than you remembered.
The notebooks span from her early teen years until shortly before her passing. There are years missing, significant intervals of time unaccounted for. For the most part, the gaps coincide with those few years when the pain was minimal, and she looked her best. She wrote the most when she thought death was imminent. During this time, the medications eased her body but twisted her words. Mom was an unreliable narrator.
The journals’ aesthetics are in direct opposition to my mother’s modern and tasteful sensibilities. Apart from the childhood diary, these notebooks are pastel and tacky, most likely drugstore purchases by acquaintances or distant relatives. One that she started on her 34th birthday is an especially hideous lavender floral print with a countrified image of straw hats and baskets of flowers. My mother hated flowers.
There is a journal inscribed to me although I don’t remember ever being gifted it when she was alive. Each entry begins “Dear Jillian,” but, early on, there is a digression that conveys her hopelessness and frustration followed by: “I’m forgetting whose book I’m writing in.” The journal is slick and sky blue in color. On the front is a watercolor sketch of a young girl carrying a metal bucket through a quaint and pastoral setting. She is performing her daily chores. A dutiful daughter, a martyr.
“Oh, aren’t you just the littlest martyr,” she hissed at me, wheelchair-bound in the Sam’s Club checkout aisle. Bored and hungry, I was leaning over the shopping cart like it was my Victorian fainting couch, provoking my mother’s wrath. I looked at her dumbly. I was eleven and not familiar with this word.
She continued, “A martyr is someone who thinks that everything is so difficult for them and they have it the worst. Poor, poor Jillian. She has the meanest mommy in the world.”
“I don’t think I’m a martyr,” I mumbled while burning tears slid down my pouting cheeks.
“Then quit acting like one.”
Another vocabulary lesson. Another scar that would heal when I realized who the real martyr was.
On most pages of the journal dedicated to me, the truth is diluted because of her intended audience. She wants to protect me from those all-consuming thoughts brought on by depression, financial worry and bodily pain that comprise her other journals.
January 29, 1992
Today you won the spelling bee for the second time in two years. Last year I was in the hospital […] I remember (even though I was on a lot of drugs) I was so excited and begged the nurse to let you up and you and Justin came up.[…] I was so proud of you.
I know this has been a hard year for you; for all of us and you have tried very hard to help us all lead a normal life; and of course it was not normal; but maybe it shows all of us that there are more important [things] like having a healthy family and that families are different; not many people celebrate their birthdays in their mom’s hospital room or drink eggnog in bed on Thanksgiving, or give a fashion show in a hospital room.
I appreciate that you don’t act embarrassed by the way I look right now. You know I have always said you were a fighter when I was pregnant with you; only you and me knew that you would be born and you would be born beautiful and you would be born special[…]
This first entry is a warm testament to our halcyon days. Throughout my 5th grade year, my mother and I bonded over the Scripps National Spelling Bee word list as I prepared for county finals, then state. We’d both lay in her bed on Saturday afternoons in the dark, the TV humming in the background was the only source of light. She’d quiz me, choosing a word at random, and I’d confidently spell out each letter, awaiting the moment when her eyes glowed in the dim with pride.
Prior to each round of competition, my mother would tell me I was beautiful as she applied blush to my baby fat and tamed the ends of my fashionable bob with her curling iron. I’d kneel down in front of her as she sat in her wheelchair, my back to the vanity mirror but it didn’t matter because I only wanted to see myself through her eyes. Brandishing the mascara wand, she’d command me to raise my eyes to the ceiling like a saint. I wore a new dress and matching headband.
“Spell ‘corporal.’ Spell ‘whittle.’ Spell ‘Mississippi.’” I wanted to spell each and every word of the English language correctly so we could remain connected, so I could continue to feel her soft and delicate fingers on my face, around my shoulder as my father took photos after each win. This is what normal families did. They cheered on their daughters and had celebratory meals at chain restaurants.
At the state finals, I wore my lucky black dress and headband. After this round, I’d be on my way to Washington, D.C. for the National Spelling Bee. I would wheel mom around the Washington Monument, the White House. I spelled “pedagogist” with an “e” instead of an “a.” They rang the bell and it was all over.
My mother’s other journals are grim and painful reads. She refers to the last notebook she wrote in as “my sick well book, my listening ear, my shoulder to cry on.” While there are many quotidian details about errands to craft stores and doctor offices, most entries express a woman’s fury that her body has betrayed her and that others refuse to acknowledge this betrayal.
February 11, 1992
I am so angry I want to kill myself. I want to scream my fucking head off…I am fucking useless, a fat blob that vegetates for a year unable to help myself or anyone else. I don’t know how I can go on like this. What can I do?
I saw my mom in her darkest moments, moments that she never intended me to witness, similar to the moments in her notebooks that she never intended for me to read. Depressed and broken after my father’s departure just months before her passing, she’d prop up her pillow and put on her Estée Lauder while asking me repeatedly if I thought my dad would come back if she got off the steroids and lost some weight. Her moods were mercurial and she could be cruel if on a particularly potent dosage of medication. She depended on me for nearly everything and easily lost patience if I didn’t bring the right color of paint from the crafts supply bin or didn’t offer Nurse Leslie an iced tea upon her arrival. She had a bell she would ring whenever she needed something: her pills, Ritz crackers, a glue gun, her dayplanner, her pills. I cringed at the sound, dreading the caustic and slurred directives to come when in its presence.
The ghostly echo of that bell heralds shame now. I ignored its call on more than a few occasions. The sound of it was embarrassingly vulnerable, a reminder of how familial roles had inexorably shifted. Shortly before her death, I’d leave her alone for hours at a time while I entertained friends in my bedroom as if I was a seventh grader living on her own.
“Where’s that noise coming from?”
“Oh, that’s just my mom.”
My mother’s journals help me re-examine my complicated relationship with her with something approaching clarity and acceptance. I read on even when I come across sections that throw everything I’ve ever believed about her, myself and our relationship into total disarray and cutting relief: “It seems unbelievable I am going to have another child and sometimes it seems unbearable because Jillian has been so crappy lately. She probably senses it from me.” Or when she made this observation about eight-year-old-me: “I don’t think she ever needed me… Her shell grows harder to get threw [sic], I’m to blame I guess…” Had I always had a shell? Did I not need her then? I can’t remember.
I was forced to re-evaluate everything about my childhood in this raw and completely unromantic light. If I’d never had access to my mother’s inner thoughts, I could still do what most of us do when we lose someone: idealize them and the bond they shared with us. It’d be all cookies and care and can-do-no-wrong.
But there was a lot of wrong done. And I am grateful for the wrong as much as I am for the right. I am grateful to have access to multiple versions of the truth and, subsequently, multiple versions of Linda Crowther. The first few years after my mother’s death, there was a raging emptiness that I couldn’t fill because I didn’t have all the answers I wanted. Whenever I gathered the strength to pay tribute to her memory, I was confronted with the worn-out dichotomy: the beautiful and vibrant stay-at-home mother vs. the bedridden and bruised woman with oxygen tanks and comas in the ICU, who was nearly unrecognizable in those last few months. There was so much more to her, so much in between that I missed because of the particulars of our family situation. There hadn’t been time to ask about my mother’s hopes and dreams because to do so would be to rub salt in a festering wound. The gaps in her story left her incomplete in my mind.
It is her words that fill those gaps now, that resurrect her in all her sickness and vitality and vulnerability and strength and uncertainty and hope. I know her as a moony adolescent confronting mysterious headaches and crushing on her youth pastor’s son. I know her as a young mother and wife with dreams of becoming a writer deferred.
I know her as a woman with glaring insecurities: “I can handle the clots, the kidneys, the R.A. [Rheumatoid Arthritis] and the M.S. [Multiple Sclerosis]. I cannot handle my appearance. I know I should be grateful that I’m alive and I know I made various deals with God while I was in the hospital; but I look at myself and I gag.”
I know her as someone still trying to grow up: “I still feel like a child, a jerk, like I’m not in control. I was reading my old diary. I was such a nerd.” In her journals, she is a host of contradictions, a jumble of flaws and failures and fantasies that make her that much more authentic, that much more real.
In my journal, Mom edited our life, paring it down to the rare highlights–now free to shine as they were no longer surrounded by fear, prescription drug side effects, chaos, late-night ER visits, hopelessness and the other core themes of her life. She saved that for herself. Even if she did plan for me to read my journal while she was alive, she knew it would eventually become a posthumous read. She knew I’d eventually seek out her words after her death, looking for clues of who we both were to each other, searching for confirmation of those glimmers of love she showed me when I could make her proud. So, she rewrote the past to shape my future. She filled a whole book with the story of those sweet Spelling Bee days when we both willfully pretended that our lives were ordinary and happy. This effusive and tender tribute to me preserves the best version of herself. She wanted to be remembered as a mother, my mother.
My narration is just as self-serving. In 1992, at age 11, I wrote my mom a letter on the last page of the journal she’d written to me. I have no recollection of writing it or reading the parts she wrote before it:
I love you with all my heart and I enjoy talking with you, like today. I think that we’re getting closer every day. Today you and I ate marshmellow [sic] krispy [sic] treats and I wrote my story on the computer. I think today was a good day for us. You are getting better. I know it. Your self is coming back. You are gaining your memory back more and more. I know that you will one day be all well and everything will be back to normal…
I’m not certain who this “self” coming back was that I referred to, but I am certain that this excerpt makes me recoil in embarrassment. It’s achingly insincere. I have a vague recollection of this day. My mother showered my writing with attention and praised my baking skills as she bit into a brittle krispie treat. It could have been that I was the perfect caregiver. It could have been the perfect dosage of liquid morphine.
I was desperate to reassure her so I could reassure myself, so I could present a version of the truth that offered hope and the semblance of a normal and healthy mother-daughter relationship. If anyone were ever to peer into this notebook, they’d see a mother’s love reciprocated by a doting and supportive daughter. They’d detect the poetry in the mundane.
I didn’t believe my mom was getting better. I read the truth on her body–each stiff joint and bruised limb and glazed eye spelled out her suffering. She did not need me to echo what we could both hear so clearly in the strain of her movements and in the labor of her breath. The language of illness is unspoken but heavy with meaning.
Yet, I wrote her an encouraging letter brimming with unearned optimism. Our journal ends with a promise. Our journal ends with a lie. By reading my mother’s words, I’ve learned that sometimes the lies we tell each other say more about us than the truths we confess. I wish she were here to lie to me now.
Jillian shares the story behind the story:
I’d been trying to write this essay for most of my life, to begin to tell the story of caregiving for my terminally ill mother while honoring who she was apart from the tragedy of her body. Once in custody of her journals, I began to connect her words to mine and explore how language bonded us but also served as a barrier—a way to protect us from how her body failed us both. I wrote a version of this essay many years ago. After one personal rejection, I put it aside. Not because I didn’t believe in it but because I let life get in the way. During the pandemic, I returned to it and my writing in general. I was floored that Pithead Chapel accepted it.
Jillian Luft is a Florida native currently residing in Brooklyn. Her work has appeared in Hobart, X-R-A-Y, Booth, The Forge Literary Magazine and other publications. She is currently at work on a memoir. You can find her on Twitter @JillianLuft and read more of her writing at jillianluft.com.
“My Mother’s Only Reader” was first published in Pithead Chapel.