When she started hospice, my mother chose to go home rather than getting her care in the hospital. It sounded nicer, she said. Cozy. She was an optimist, even as her besieged body sunk her to the rude depths of these options. I was 27 and terrified and my mother had brain cancer. I was ready to throw myself at any shred of familiarity hiding in the bleak clinical narrative of her discharge paperwork. I convinced myself that we would be okay if we just went home. I tried to silence the insistent bleakness of words like malignant and terminal and palliative, because that is what she taught me to do.
I still had a lot to learn about the expert gaslighting of death, how it can use benign words and glossy pamphlets and fake smiles to lull you along. How tumors can grow slowly at first, and so can coups. But as mother and daughter, we soon found ourselves unsettled and bewildered, subjects of a strange new establishment. Home was no longer home.
Here is what I mean: Close your eyes and picture your bed. You know its shape and its place in your room, its small tactile histories. Feel your limbs weighting the mattress. Notice the particular scents of skin and sweat and sleep. Imagine the way your linens look when you wake in the morning, their customary jumble. See the way the light slants through your window. Now put on your most comfortable outfit. The touch of the fabric on your body, the way it knows you, how it outlines your place in the world, is perfect. Answer your everyday hunger and fill your mouth with your favorite food. The flavors dance. Delight in the textures, the pageant of spices and seasonings. Be there, in that sensory nest of bed and clothes and food.
Now rip the nest apart, piece by modest piece, and replace it with a clinical model pumped out by Big Med. When my mother came home, there was a huge sledge of a hospital bed with metal guardrails and a touchy remote for adjustments, stacks of adult diapers, a hoard of orange medicine bottles, and gowns with ties in the back. An oxygen tank hulked in the corner. For meals, there were big gray trays and children’s sippy cups. Staff began bustling through on their rounds, taking temperatures and scribbling notes about pain levels and possible UTIs.
I clung to the hope that none of it was real, like it was some peculiar game of Hospital. We would try out the accessories for a few days, buzz the bed up and down just for kicks, play nurse with the pills, and then my mother would become my mother again. She would ease up from the bed, pull on her customary jeans and tee shirt, and walk into the kitchen to make a cup of instant coffee and get back to normal. Her hair would grow back, her steroid-puffed limbs would smooth out, and the ugly tumors would slink from her skull and disappear. She would be 55, and healthy, and unremarkably alive. Everything would be fine.
That same day, I caught her gazing at me with the monk-like forbearance that was becoming so customary with her. Her eyes protruded from the steroids, but they weren’t manic. They were still calm and brown and warm. “It’s weird to think that I’ll never wear real clothes again,” she observed softly. And that was when I knew, with a sudden lurch in my stomach. None of this was a game. She was going spend the rest of her life lying in a hospital bed, swaddled in diapers.
Until she died.
Until she died, and I was left here. Without her. Without my tether to goodness and compassion and love, but somehow still here, floating in the world like a tiny piece of thread.
As much as I squirmed against this reality, I had no way of changing it. I was helpless to prevent the tumors from growing. But I knew from some fierce internal place of fundamental justice that I could not let her spend the rest of her life in the generic gowns from the hospital. No way in hell. The greenish one was the color of a swamp, and the other was coverall blue. Their pattern was essentially the textile equivalent of institutional linoleum floor tile, soured with the antiseptic smell of the hospital. They reminded me of a hostage huddling away from life. And that kind of apathy was simply not her.
My mother was an observer, a modern Hestia of the hearth minding the connection between home aesthetics and feelings. Color, texture, and form held meditative significance for her, especially in fabrics and furnishings. When she was growing up in Chicago her father owned an antiques shop. Some of her fondest memories, she told me, were of accompanying him on trips to track down new items for resale. Weekend treasure hunts, she called them.
She sewed most of her own clothes in high school, and in later years she made my Halloween costume dreams come true with the same rickety seventies Singer. I was Tinker Bell, Ariel, a medieval princess, and Laura Ingalls Wilder. My junior high years were stereotypically anguished, but she got onboard. She gamely stitched getups for a bloody bride, a mad butcher, and a dead Victorian maidservant. As labor-intensive as they were for the busy mother of two kids with disabilities, those costumes were also evidence of impressive skill, a sharp eye for detail, and genuine maternal love. They proved her belief that all of my feelings and fancies should be honored.
Our 1920s Tudor bungalow was my mother’s sphere, and she always honored its harmonious soul. One of her only personal indulgences was a pricy subscription to American Bungalow magazine. Issues came in the mail four times a year, and she spent hours wandering the rooms on their pages. I can still picture her in the comfy armchair in our living room. Sometimes she got excited and called me over, pointing out the turn of a stately wooden bureau or the pattern of a tablecloth. These things mattered to her. They spoke to some sense of balance in her own soul.
Making her face death in tasteless hospital garments seemed like a needlessly cruel cosmic joke. It was beyond the fraying edges of my tolerance.
I also suspect that, layered beneath my understanding of my mother’s sensibilities, a lot of my attitude toward the hospital gowns had to do with shoes.
See, on the first day of hospice, I was wearing blue and white running shoes with rubberized treads and soft mesh construction. They were the latest in the long line of similar shoes. I have a disability called cerebral palsy, and I wear orthotic braces for support and range of motion. Knee-high plastic supports with Velcro straps and metal buckles, they amp my shoe size from 6 to 10, and any shoes I wear have to accommodate their width and the inch of foam lifts boosting my shorter left leg. I have become adept at honing in on comfort and durability. I track down the grandma shoes sitting plush and quiet in the back of the store, while pointy stiletto heels and chic flats preen on the display shelves. I am a master of practicality.
And yet my shoe history is far from tragic. I can recall a long succession of well-loved footwear. I was the proud owner of baby pink high-tops with black trim, soft brown loafers with moccasin trim, classic saddle shoes, purple suede oxfords with a fun-to-rub embossed logo, and bright red leather pioneer-style boots. The boots were my personal favorite, and I felt invincible and sassy when I wore them.
All of those shoes were special to me not just because they were cute, but because they were an indication of my mother’s dedication to me, and what she knew I deserved. Finding those shoes was a monumental effort. Every new pair of orthotics was slightly, maddeningly, different than the last, and there was no easy way to find shoes to fit them.
So we pumped ourselves up for a trip to the shoe store, determined to find a good pair no matter how long it might take. We spent hours hunkering down in the aisles, wrestling with tongues and laces, taking wobbly test trips, squishing in lifts and taking them out, and remaining alert to any pressure or pinching.
Our trips were an anthropological study in the range of reactions to my braces, a constant and visible accessory in the outfitting of my life with a disability. Some salespeople were cheerily overzealous. Manufacturing caring expressions, they offered to help with adjusting my braces or wedging on a stubborn pair of shoes. They came from back rooms bearing measuring devices, shoe horns, and their own orthotic-friendly suggestions. Some pretended we didn’t exist, avoiding eye contact from the moment we walked through the door.
Other people wondered about my braces, too. Children stared and asked questions while their mothers vice-gripped their arms and answered with measured words. We either got strained smiles because it was “just so great” that we were there, or evil eyes for basically conducting grisly foot surgery next to the Keds.
Even staff sometimes asked us to move to a more secluded corner. This was for our own convenience, allegedly, but it was also a way to keep us hidden away. My mother always maintained that we were just fine where we were. When salespeople tentatively suggested that we might have better luck in stores carrying “special” shoes, she fired back that we wanted these shoes. I was entitled to the same shoes as everybody else, thank you very much.
She was talking about shoes, but she was also telling me something. You are important, she was saying, so take the time to find the things that feel like you. Remember, my daughter, that you are entitled to beauty and comfort every day. You deserve the same things as everybody else. Be persistent. Never be ashamed of who you are or the life that you live. If people have a problem with your disability, with your body, with you, then it is their problem, not yours. You do not have to hold their filth.
There is nothing wrong with you.
My perspective on these messages evolved over the years, but they shifted sharply into focus against the bland backdrop of those hospital gowns. That evening, after my mother had fallen asleep, I started Googling. After rejecting overpriced patterned options and depressingly tasteful neutral tones, I stumbled upon a cheery Etsy shop owned by a geriatric nursing assistant.
I smiled when I saw the cute fabrics and perky colors of the gowns, already thinking fondly of the owner making them for her clients. Whoever she was, she was using her time and energy to stitch together swathes of brightness against banality. She was a seamstress warrior fighting the encroachments of bedpans, medicine spoons, and Miralax. I silently thanked her for her courageous compassion and added two gowns to my cart – one in purple paisley and one in jewel-toned floral.
When the gowns arrived in the mail, the tingle of happy anticipation that came with simply touching the lumpy white package was almost startling, a fairy tale magic stone glinting up from the grit of our days. I watched my mother’s face as I tore it open and pulled out the gowns.
For one wild moment, the magic stone worked. The cancer was a beanstalk we could scale and the fear of her death was a giant we could slay. That moment was gold. Her eyes lit up, and her mouth made a small O. The fabric was beautiful. She loved the color. She would feel so much better wearing them. The next day, when her assistant, Dolly, came to change her into her freshly-washed new gown, she started up all over again.
When she was finally clothed in her purple paisley, she was radiant. She kept touching the edges with her cancer-clumsy fingers and a little smile hitched the corner of her lips. And even though her face was swollen and shiny and her hair was nothing more than baby bird fuzz, she was somehow much more like herself again.
In that color, I saw her on our front porch nestling purple mums into a pot of dirt. I saw her on Christmas Eve, the rainbow lights of our tree twinkling off her favorite amethyst pendant. I saw her settling a plum-colored chenille pillow against the back of the sofa, then stepping back to admire her tidy living room. I saw her. She was still there. I could tell that she felt it, too.
The gowns did not change everything, of course. They did not stop the uncontrollable seizures or loss of motor control or pain. They did not keep her from weeping on bad days. They did not vanquish the ugly words and exhaustion and resentment of a family rapidly losing its center. Some days I was not a giant killer. I was nothing more than a daughter-shaped pile of ash and shit and memories, the Little Match Girl with her desperate flares against the dark.
But those flares mattered, so I kept up my orders from Etsy. She watched as I scrolled through the listings and then she made the final pick.
Every few weeks, a new gown or two came in the mail. Those days were not perfect, but they had at least a frisson of magic. The gowns assured a smile, a moment of appraisal, and a sense that life could still be exciting. Sometimes, in the middle of reading to her or feeding her a snack or asking how she was feeling, I caught her gazing at her gown with that same little smile. When her nurses came, she asked for their advice about what to wear next, and she loved telling the story of how her daughter had ordered the gowns especially for her. “Aren’t they beautiful?” she asked. “Holly got those for me.”
New gowns sometimes garnered embarrassingly sentimental praise, especially as her illness and medication turned her into someone softer, more emotionally porous. One particular gown was white with a pattern of flowers, butterflies, hearts, and birds. When she saw it, tears came to her eyes, and she couldn’t stop touching it. “This is like a work of art, Holly,” she breathed. “You should frame this so that you can keep it nice.” When I tried to convince her that I didn’t need to frame it because she was going to wear it, she couldn’t stop saying how lucky she was. I told her I was the lucky one, but I don’t think she believed me. It was a touching and bittersweet moment, but it was quickly sucked into the ocean of her illness. Later, after she was gone, it would resurface.
If the beginning of hospice is a no-nonsense medical takeover, then the end is a beloved house falling to ruin. It goes like this: One day you wake up and the air is filled with the stench of spoiled milk and bad meat because the refrigerator went bust overnight. Moldy water makes the floor slick. You should care, you should get up and clean, but all your energy has sapped away. And besides, you aren’t even hungry.
The next day you discover that the toilet clogged up and sewage flooded everywhere. It’s brown and stinking in the bathroom, but also in the living room. There is something wormy and acid green wiggling on the couch. Plump gray bugs crawl out of your favorite armchair, the place where you always used to read, but you could never concentrate on a book now.
Maybe you are a little bit hungry? There are still some things in the kitchen cabinets. A can of tomato soup with a Best Before date from 1998. A re-jarred quantity of dark green dried herbs with the word “Sage” on the cap in black Sharpie. The handwriting is yours, from before your letters got shaky and misshapen. An open box of multigrain crackers with the corner chewed off. In the shadows you see strange, obese rats with elephant skin. No, not really hungry at all.
And then the power goes out altogether. You are left in the dark, and everything smells rotten, and you can’t see or move. What if something happens? How will you charge your phone? Where is your phone, anyway, and could you even manage the technical map of buttons and screens? You don’t even know who you would call, or why, so it doesn’t matter. You just want to sleep.
And then someone touches you, so gently. Someone pulls soft fabric over your body. Someone takes your hand, and someone begins to read. From very far away, you hear a story about a girl and a pig and a spider.
You don’t really understand the words, but you are sure that the story is about love.
Her last gown arrived just a few days before she died. She was starting to lose her appetite altogether and she spent more and more time sleeping. Talking was an effort. But she often rallied for Dolly and her nurses, as if she wanted to put all of her remaining energy toward being a good patient.
As usual, Dolly clucked over the new addition to her wardrobe. It was ocean blue, with an opulent array of Hawaiian hibiscus and vines. “I love it,” she said. “It makes me feel like I’m going on vacation.”
Maybe it was an innocent comment, but I suddenly remembered reading about how people nearing the end of life sometimes talk about going away on a trip, or needing to get ready to leave. A chill flickered up my spine even as I smiled and gripped her hand. “You’re right,” I said. “It does. You look gorgeous.” She smiled her trembly smile, the one that looked like a sideways J on the unparalyzed side of her face. “You know, Holly,” she said, “These gowns have made all the difference.” All I could do was protest dumbly and blink back the brine of tears.
She was the one who had made a difference for me. That old cliché. But of course she was.
She died a few days later, in the early morning hours of a Wednesday in late May. She was wearing her favorite lavender paisley gown. Her face in death was like a blurry photograph of a long-ago relative. She was a stranger until I looked closer, and then familiar features began to emerge. The slope of her nose. The curve of her eyelids. The shape of her lips. I kissed her and touched her face, echoing how we first knew each other. “Here is your nose. Here are your eyes. Here is your mouth.”
When her body was gone the nurse on duty said, “You did a great job, you know. You did the hardest job you will ever have to do.” I felt in my bones that she must be right. What could possibly be worse than watching the most loving and wonderful person in my life sicken and die?
The months after her death were barren, and I soon realized that their sterile drip was going to be worse than the months I had just survived. There was no more magic. It wasn’t that I was clinging to idealized nostalgia. I was simply stuck. If there is a place where nothing shines, I was there.
I woke up not knowing what to do without her presence in the world, and I longed for something – anything – to reconnect us. I wanted to make her toast with butter and jam and feed her Jell-O. I wanted to talk to her about what she was like in college. I wanted to bring her medicine. I wanted to read her Charlotte’s Web. I wanted to discuss her excrement, if it meant hearing her voice and seeing her chest rise and fall and touching her skin. I wanted to do anything to show her I cared. I just wanted her. Wanting, ferocious as a cauldron, still left me on the icy hill of the mourning and her in the deep forest of the dead.
I could no longer order new gowns for her, but I kept the old ones. I just couldn’t bring myself to throw them away. In purples and pinks and blues and greens, there she was, smiling at me. “Hello, my little pumpernickel,” I heard her say. “I love you.”
A family friend is a quilter, so now the gowns are stitched together and folded at the foot of my childhood bed. Deceased Mother Quilt has never been on my wish list, let me be clear. In some ways, I can’t help but think of it as a shroud. Those gowns clothed my mother’s body when it was aching and messy and ridden with the cells that would eventually take her away from me. Two of them clothed her body after death. But those gowns also clothed her in dignity. She taught me from childhood about maintaining grace and gratitude even when fear seems easier.
With plastic and metal on my legs and this soft quilt on my bed, I am living our shared history. I am the barest thread unfurling in the space between us. Most days I still falter.
But I am still here, tending that space, because that is what she taught me to do.
Holly Aldrich is a disability services professional working in higher education. She lives in Cambridge, Massachusetts with her amazing cat, Gracie. She is an introvert, a listener, and a disability rights advocate. Her mom, Meg Aldrich, died of brain cancer in 2014. She will always be her mother’s daughter. You can contact her at firstname.lastname@example.org.