I’d heard stories of how much waste a person’s intestines can hold, enough to add pounds to the scale. But I never imagined the sheer volume my own body would produce, especially since I was eating almost nothing. With no rectum to hold anything, waste poured through me the moment it was ready. A single trip to the toilet could last a few minutes, or forty-five, or longer.

By the fifth month, my thoughts ran on a loop: I’ll never have the life I used to live. I’ll never be healthy again. I’ll never have bowel control. I’ll live a life of embarrassment: the smells, the urgency, the loss of control.

One day I told a friend how frustrated I was, first the bag that kept leaking during my three weeks with the ileostomy, and now with the daily leaking without a functioning rectum. He told me about a man he’d once seen in a store whose bag had failed. Feces ran down the man’s leg, and the stench drifted far enough that my friend could smell it from across the aisle. He felt sorry for the man, he said, but couldn’t bring himself to tell him.

That story landed in my gut. I was that man now. Every outing held the threat of disaster: people staring, pitying me or sickened by me.

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My name is Allyne. Al-leen. If you’ve only seen it written, you probably said it wrong. Don’t worry. Most people do.

Mama was a storyteller, like most Deaf. In Deaf culture, storytelling is how we hold our lives together: our days, our history, each other. But unlike most Deaf, Mama was always the Shero of her stories. If she wasn’t at the center, it wasn’t worth telling.

So everything I know about my birth, I know from Mama’s telling. And it starts with my sisters.

Nine months pregnant and living in a cabin in the logging town of Grey Eagle, Mama headed to the tiny hospital with Daddy as her pains grew. There was no interpreter waiting for her. Back then family did the interpreting, and none of ours lived nearby. Someday we kids would be old enough to interpret for them. But not yet.

My sister Bonnie was born, and Mama thought she could rest at last. Then another wave hit. The doctor held up two fingers. A second baby! Mama hadn’t wanted any babies. Now she had two. That was Donna.

Then the contractions came again, and this time Mama screamed, terrified a third baby was coming. The doctor just shook his head. No one explained it was the placenta.

Three years later, she was pregnant with me. Another small town, another tiny hospital. Still no interpreter. Still no wish for a baby.

As soon as I was born, the pains started again, and Mama screamed, certain she was having twins all over again.

For the rest of my childhood, she reminded me, “Good thing you not the twin!” One set of twins was plenty.

In those days, new mothers stayed in the hospital five days. Mama treasured that time alone while Daddy watched the twins at home. But there was a problem. I didn’t have a name. She hadn’t wanted another baby, so she hadn’t bothered to choose one.

Daddy wanted to name me after his mother, Elizabeth. But Mama hated his mother, so she refused to agree.

Mama’s mother was Hester, and so was Mama. She wanted me to be Hester the Third. Daddy hated her mother, so he refused to agree.

Day after day, I remained nameless.

On the fourth day, Daddy, who loved Zane Grey westerns, arrived with one of his books. He opened it to a page about a young cowgirl named Allyne. “We give this name?”

Mama looked at it and loved it. Not for how it sounded. She couldn’t hear it. She loved how it looked spelled on her hands.

They couldn’t hear each other say it. But when they said it out loud, they both said it the same way. Al-leen.

Mama didn’t hear words. She saw them. I once asked her why my twin sisters’ names didn’t rhyme, the way twins’ names often did back then. She looked at me like I’d missed something obvious. “But they do. Both have O-N-N. So rhyme.”

To Mama, words weren’t sounds. They were shapes. And that’s what she saw in mine.

But outside our home, I lived in the hearing world, and there my name got butchered. Arlene. Aileen. Earlene. Elaine. Alynn. Allen.

We moved all the time, so every year meant a new school where nobody knew me. Every first day, we lined up against the wall and waited to be called to our seats alphabetically. With a first name starting with A and a last name starting with B, I was always among the first called.

“Alan Bennett,” the teacher’s flat voice echoed through the classroom.

“Here,” I’d whisper, stepping forward. And every teacher said the same thing: “Oh, you’re a girl. I was expecting a boy.”

The giggles swallowed my chance to say it right. Al-leen.

I grew up hating the sound of my name. I envied my sisters’ names, names nobody ever stumbled over. When your name is the first thing people get wrong, it becomes the first thing they misunderstand about you. My name made me an outsider before I’d said a word.

Little by little, I grew warm toward my name, then fond of it. Somewhere along the way, I understood why.

You see, most hearing I meet get my name wrong. But almost every Deaf I meet says it right, the very first time. They can’t hear it, just like my parents couldn’t. Yet in their Deaf voices, my name sounds the way it did at home.

Mama never heard my name. Neither did Daddy. They chose it with their eyes, for the way six letters looked on their hands.

For years I wished my name away. Now I know it was never meant for the hearing. It was meant for the people I come from.

So when the Deaf say my name as Mama and Daddy did, I don’t just hear my name.

I feel its vibration ripple through my culture, through my lineage, all the way home.

Allyne. My Deaf name.

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I believed in myself. I knew how to live with pain, loss, and suffering. Yet I had no idea how to get through these days without frustration, fear, and fury. My days faded into the background as I peered through veils that shadowed my path, while the nights swallowed me in a darkness that brought neither sleep nor ease. The urgency never let up. On lucky nights I slept ten or fifteen minutes.

Raymond refused to use the bathroom on the main floor, afraid he’d be in it when I needed to run to the toilet. The many small things he did for me each day propped me up enough to keep plodding through what had become a muddy stretch of road. His corny jokes and his teasing made me laugh and pulled me back from taking myself and my predicament too seriously. I still remember waking one morning to find a sticky note by the coffee maker, printed in his neat cursive letters: “Sometimes I wake up grumpy. Sometimes I let her sleep in.” I laughed. He always knew how to lift me.

Three weeks after the reversal surgery, I returned to the surgeon for my follow-up. By then my days were blotted with sorrow, with blame I kept swallowing, and with the bitterness of a life severed from the one I’d known. Tears came too many times a day. They spilled over the moment the doctor walked in and asked how I was doing.

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That dark, windowless room became my prison.

Every day for five days, I was told no rooms were available. The hospital was full of Covid patients. So I stayed in the dark, and the darkness settled over my emotions. It wasn’t depression, exactly. It was dread, a heavy knowing that my life had been permanently altered.

My body rejected every bite of food. The tiny room filled with the stench of my vomit. A saline IV was all that kept me going.

When a room finally opened up on my last day, I no longer cared where I was, or what was being done to me.

I relished coming home to my own bed and my own food. But comfort continued to elude me.

A rectal-colon resection requires a temporary ileostomy bag so the surgical site can heal. I had refused a permanent colostomy bag. This one I understood and accepted, knowing it would come off. What I did not understand was what living with it would mean. Mine left very little distance between the food I ate and the bag, and no one at the hospital had warned me what was coming.

My appetite had all but disappeared. When I did manage to eat, the food seemed to pass through me and into the bag in as little as an hour. The bag often filled so quickly that it leaked. Another thing no one explained: how painful it is when waste leaks onto your skin.

I could not keep up with the waste pouring out of my body. My days shrank to a cycle. Find something I could keep down. Change the bag every hour or two. Shower. Change my clothes. Wash them. Start again.

It was the first time I understood how much waste a body can produce.

It would not be the last.

Food is meant to travel the full length of the intestines, giving up its nutrition along the way. Mine had no time to. I was already thin after seven months of chemotherapy, and now I was losing a pound a day. Three weeks later, I weighed 120 pounds.

Raymond later confessed this was the one time he truly feared I might die.

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A ping came through on my phone. I checked the message and saw it was my daily Abraham-Hicks message. I don’t recall the exact words, but the message was something like: We don’t always know why the Universe directs us where we need to go. We only need to trust that the right things are happening.[1]

With a lifetime of experiences that were like roller-coasters, twists and turns I never expected, and insurmountable mountains of pain and agony, I had somehow always been led to where I needed to be. Maybe this was no different. I knew in that moment there was a reason I was headed to this surgery, whether or not I wanted it, agreed to it, or understood the purpose it held in my life. The choice was larger than me.

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They decided I must have surgery.

Despite my continued insistence that I could heal myself, nothing I said seemed to reach the ears of the surgeons. They continued to talk about surgery as though it was the only possible path forward, as though my agreement was insignificant. I kept insisting that I did not want the procedure, but my words seemed to disappear the moment they left my mouth.

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The photographer said, smile. I thought that meant show my teeth.

THEN…

Kindergarten scares me. I don’t want to go but Mama continues to grab my hand and drag me there every morning. One day, I’m too afraid to ask the teacher if I can go to the bathroom and keep hoping I can wait until I get home, but I don’t know when that will be because I can’t tell time. I wet myself. In front of the entire class, when the teacher discovers I’m wet, she says, “Well, Allyne, I can’t call your mother to come get you. She wouldn’t hear the phone because she’s deaf. You’re just going to have to walk home. Come back tomorrow.” The other kids are snickering now and pointing at my wet dress. I don’t know how to tell time, but I do know not to respond, either to the teacher or to the kids’ taunts.

I wonder why the teacher says that about Mama. I know she’s deaf.

Tears stream down my cheeks as I leave the schoolhouse. My sticky, wet dress clings to my body, forcing me to walk with my legs slightly separated. The short walk I take every morning to get to school now feels unending. My trek leads across the grass, a large bare field, across the street, and down the road. I arrive home, still crying, still wet. I know the side door will be unlocked. Mama can’t hear our knocks, so she always leaves the door unlatched.

Mama is home. We have one car, and Daddy drives it to work every day. He doesn’t want her to go out without him because he hates when she enjoys herself. A one-car family is a great arrangement for him, but prison for her. I enter through the side door leading into the kitchen. She isn’t there. I can hear her in the living room, banging a broom around the floor as she sweeps. I approach her from the side of the room, so she’ll see me coming up to her. If I tap her from behind when she thinks she’s alone, she might get startled. That makes her mad.

“Home why?” she signs. She doesn’t say hello.

“Dress wet.”

“Go toilet should.”

I nod my head. Of course I should go to the toilet.

“Teacher send you home why?”

“Yes. Teacher say you deaf. No call.”

Exasperation cloaks her face. “Dress change. Go.” She sends me to the bedroom without asking how I am, how I feel, or if I’m hungry. I’m used to her responses.

NOW…

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Memories from my childhood occasionally jump through the veils of time, frequently without warning, chords pulling the small child to the surface—the little girl sometimes allowed to be a child, often required to be the adult. Mama was not loving nor nurturing, and I learned early in life not to expect support from her. That day in kindergarten remains as vivid to me as yesterday’s events. The teacher’s lack of response to my needs because my mother was ‘disabled’ was normal. Daily life to manage the Hearing world persisted without Mama’s concern.

In time, I developed enough courage to use the toilet. Time, however, never brought me the wherewithal to stop hurting when Hearing criticized Mama or treated her like a child. That courage began to creep into my soul after I attended a CODA conference in 1997. I have unending gratitude to Millie Brother for her insight that we needed a place to belong.1

Some years ago, I accepted an interpreting assignment at a high school. Expecting the usual parent/teacher conference, I encountered a Deaf mother determined to educate the teacher about her (Kid of Deaf Adults) Koda daughter’s needs as a minority in her Deaf culture. Wow! Suddenly I found myself hurtling through space, all the stars and planets blurring around me, as though I was in the Millennium Falcon. Those stars and planets exposed my myriad experiences of negotiating the Hearing world; sometimes successfully, often not. Part of me wanted to cry, to grieve the help that never came. Part of me felt immense pride to be a part of that mother’s support for her Koda.

Although I experienced a range of emotions, my pride in the achievements of Codas worldwide—who have worked to share our Deaf heritage, cultural role, and family unity—ultimately outweighed the painful memories of loneliness and adult criticism toward my mother. Many Kodas may never know the sorrows of living in a world without access for their parents; many still will. Access has expanded, yet biases, absence of acceptance, still pollute our lives. Simple understanding that we are a minority culture goes a long way to healing, helping, and holding our strength.

Mama may not have been nurturing, but she gave me a unique place in life. For that, I am grateful.

By now, my daughter was driving up to our farm every other weekend to cook and freeze meals for us. As much as I enjoyed the company of my grandsons, I felt everyone was talking circles around me, as if I wasn’t even there.

The respite was short-lived when both the oncologists began diligently calling to schedule follow-up appointments to discuss the third cog in their treatment plans—surgery.

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It wasn’t lifting anymore. It was there when I woke, when I tried to think, when I lay down at night. It didn’t clear—it found a comfortable home in my brain.

Chemo moved forward on its rigid schedule—blood draws, approval, infusion—regardless of what was happening inside my body. As my mind dulled, I became aware of a shift that had nothing to do with healing. The less I argued, the less I questioned what they were doing to me, the more agreeable I became in their eyes. Compliance was mistaken for progress. My silence made their job easier.

But I never lost hold of what was happening. Even through the fog, I could feel it clearly: I was being reduced to a set of numbers, managed instead of heard, dismissed when I stepped outside their expectations. What I said did not matter—not because it lacked meaning, but because they had already decided it didn’t.

“Allyne presents with complaints of fatigue and inability to focus. She continues to deny accepting the prescribed levels of chemotherapy,” were common notes I discovered over one year later when I read my medical records.

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But my belief did not translate into full understanding of the experience. That kind of understanding only comes when you are the one sitting in the chair, feeling your own mind begin to slip somewhere you cannot follow. Cancer doesn’t just break the body. It begins removing the things you have always relied on to hold yourself together in front of other people.

As my mind started slipping into a place I couldn’t reach, I felt the shift around me. Patience shortened. Conversations moved forward without me. When I couldn’t find a word quickly enough, people filled the silence—or simply moved on.

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As the nurse led me to the chair that would be my home for the next six hours, she practically sang, “Have a seat right here, dear, and we’ll get you all set up.”

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Unlike them, she didn’t hesitate. “You had a severe allergic reaction to the chemo. You experienced immediate full-body neuropathy, which is why you couldn’t feel your lungs—and why you couldn’t feel yourself breathing. Your doctor needs to change the chemo cocktail immediately and lower the dosage.”

Illness, weakness, and fatigue were toxicities I anticipated. Extremity neuropathy was a symptom I thought might come later. Nothing prepared me for this--immediate full-body neuropathy. I’d never heard of it, never known anyone who had experienced it, and no one had warned me it was possible.

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During those four hours, thoughts, feelings, and reactions moved through me like the fluid in my veins: would it make me as sick as the radiation had? Was it worth taking in so much poison? And I hoped to hell I wouldn’t need the bathroom—the short walk to the back of the room felt like a marathon.

My veins cooperated that day, and Raymond and I were left to find ways to fill the hours. As he read and moved between his book and tablet, I mostly dozed.

Sometime around the halfway mark, I thought, “Oh, this isn’t so bad. I think I’ll be fine.” The last two hours passed just as easily.

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My resolve to heal this cancer was profoundly challenged between ending radiation and starting chemotherapy. After becoming violently ill from a treatment that was not supposed to make me sick, I could only speculate about what would happen to me with chemotherapy treatments, that are known to make people sick. Although I had agreed to chemo, I still did not want it. I felt I was facing treatment under duress.

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I had already met with the radiation oncologist to review the plan. I expected resistance to my decision to fast before each treatment, but surprisingly, she supported it. She told me that, as an Asian woman, she practiced intermittent fasting herself. My longest fast had been three days. Five days would test me.

The plan called for targeted radiation to my pelvic area, focused on the site of the cancer. Five consecutive treatments—Monday through Friday. Dr. R assured me the side effects would be mild. I should not expect severe illness or distress.

She was mistaken.

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“Because that’s what we do.” Identical to nearly everything I encountered from then on, this was a common response.

It reminded me of a parent saying, “Because I said so.”

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Overwhelming, because everyone has a story—and an opinion they are eager to share. They or someone they knew died because they didn’t try hard enough, didn’t follow doctors, didn’t eat right, didn’t care enough. Someone else survived because they did everything right—followed orders, fought hard, consumed the prescribed foods, medications and treatments.

Lonely, because I knew I had to find my own path. I would have to navigate the mountains and valleys according to what resonated with me—all while being criticized, corrected, and pressured. Well-meaning people added to my stress and uncertainty. I quickly learned to nod, conserve my energy, and keep moving forward.

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Either way, I depended on it.

Over time, I became less concerned with what others thought of me and more anchored in what I knew to be true.

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My gaze moved between him and the doctor. The air in the tiny room had not thinned, and I continued to gasp, trying to suck air into my lungs, unable to find any natural rhythm.

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It was loud and adamant. Demanding my immediate attention.

Some events, large and small, remain in my memory as clear as if they occurred a few minutes ago. This is one of those moments.

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