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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Hugs wilt in empty air
My feet touch the floor when I descend
The bottom of the stairs
You once climbed
My body pivots at the bend
Where your empty chair haunts
You are not there

I already know this
In the fullness of time
The defrauder of my days
Causing days to play tricks on my mind
Forgetful if the day is Monday or Saturday
They blend into weeks
Passing without control like a bandit
Stealing visions of my past
With you

Fair or not
A knot binds my existence as I
Fare through my day
Perceptions, breaths
Awareness an indeterminate
Piece is missing

Query evades me
My love paws the new mist
That has become my life
Daring to cling to
Existence formerly mine

Piling my sheets into the washer
I grasp a pillowcase that has
Lost your scent

Acquainted now with the missing piece
Your scent
I perch on a bare chair
Barren of your presence I’ve grown
Slightly accustomed to
Memories of laughter
Pictures of travel
Drives in the truck talking or silent
Are mine to cherish

Tears dribble down my aging face as
I reject, and rage, at the inevitable
Loss of your scent

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A dear friend of mine has started a GoFundMe page to support me through this first year.

https://gofund.me/4c611507

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Raymond made me laugh - every single day. His laughter is one thing I miss the most about him. Many people have asked me what they can do for me, how they can help me through this tunnel I’m crawling in. My response is “make me laugh.”

Raymond’s passing taught me to appreciate every moment I am with someone I love. Wishing you all creation of special memories with your loved ones.

Love, Allyne

As a creature of habit, each evening Raymond set his clothes on the bathroom counter, readying for his morning routine. I went outside to round up the chickens, and he called me on the radio, “Do you think you could come in here when you’re done?” I went to the house immediately, called 911, rushed him into the truck, and raced down the road to meet the ambulance halfway. When the ambulance went from 65 mph to 95-100 mph in one minute was the moment I saw uncertainty for the first time. I wanted to push the rewind button to the moments before I went out to round the chickens.

He never came back for those morning clothes. I left them on the counter for the next four weeks.

For years, Raymond would now and then write me a note on a scrap of paper and leave it by the coffee maker. Two years ago, I started collecting them. Now I put one in front of the coffee maker and switch it out weekly. When I make my morning coffee, and realize I’ll be having coffee alone- again, I read the note and remember how fortunate I am to love this man. He taught me a deep sense of unconditional love that had not graced my life before him. He believed in me more than I ever did.

This week’s note: “Yay - You did it!! You’re Amazing — Love, The Universe.”

OBITUARY

In Loving Memory of Raymond A. Betancourt Junior

August 1950 – May 2025

It is with heavy hearts and deep gratitude for a life well-lived that we announce the sudden passing of Raymond A. Betancourt Junior, at the age of 74. His death was unexpected, but the legacy he leaves behind is anything but.

Raymond was born in Chicago, Illinois to Raymond Senior and Juliana Betancourt. He was many things through the course of his life– a veteran, a scholar, a social worker, an honorary community servant, a son, husband, father, grandfather, brother, and a friend to many. In every role, he showed up with heart and soul. His sense of humor was something that could make anyone laugh, no matter the situation. His laugh was infectious. His love was unconditional. And his presence was profound.

He served in the U.S. Air Force with pride, and afterward, built a family and a career with the same sense of purpose. Raymond was the first in his family to receive a master’s degree. But titles and degrees weren’t what defined him. What stood out most was how he used those achievements to help others and built his career around compassion and empathy.

He is survived by his beloved wife, Allyne, their three children: Elijah, Nicole and Lenny– and six grandsons, (Christian, Gavin, Orion, Logan, Asher, and Josiah) who meant the world to him. He was blessed with his grandsons– but more than anything– they were blessed to know the most incredible man, their Papa. Raymond was endlessly entertained by his grandchildren, so much so, it was often debatable whether or not there was an adult present when left together.

He also leaves behind five sisters (Amy, Rosie, Norma, Barbara, Gisele), one brother (Eddy), and a long list of extended family, friends, and community who were lucky enough to cross his path. More than anything, he was the foundation that kept us stable, and the spirit that guided us to light when darkness wanted to conquer.

The world could use more Rays, and though our lives will be quieter without him, we are better because we knew him. He was one of the great ones and his spirit lives on– in each of us, and for all eternity.

Live every act fully, as if it were your last. - Buddha

CELEBRATION OF LIFE: August 30, 2025

Redemption Hill Church: 9517 Mount Airey Drive, Eagle Mountain, UT 84005

11:00 a.m. Arrival

11:30 a.m., Lunch

12:30 p.m.: Opening Song, Prayer, Eulogy - Lenny Betancourt

Speakers:

Closing Eulogy - Allyne Betancourt

Please RSVP for Lunch to Allyne, atozmust@gmail.com.

Donations to help Allyne with transition costs may be made to: @Ray-Betancourt

“Come, Deaf Club now,” Mommy signs after she hoots out loud to get my attention.

I’m sitting on our battered and worn couch holding my Dolly. I throw Dolly to the side, fly off the couch, and run to get my sweater. I’m used to Mommy never letting me know in advance when we are going out. Life is a series of “come.” I love going to Deaf Club. It is thrilling-better than the park. Maybe even better than going to the pool.

The other kids at Deaf Club are more fun than any kids at school. Best of all, there are no adults I must interpret for. Daddy used to say, “Heaven for you go if good girl.” I know I’ve been good when we go to Deaf Club.

The drive takes forever through the bowels of downtown Los Angeles. My sisters and I are bouncing on the back seat and can barely contain ourselves as Mommy parks on the dirty street. “Run away not,” she emphasizes ‘run away’ with excessive momentum shooting from between her fingers. The club is in a rundown neighborhood, lined with buildings of faded colors and peeling paint. We are regulars here and we know which door to run to. Mommy is behind us.

My sister throws open the door where the dark, narrow staircase looms in front of us. Our screaming starts the moment we hit the first hardwood step, squealing our delight to make noise no one upstairs will hear. Landing on the floor, we run into the back coat room and kitchen where we’ll find other kids. Mommy catches up with us. “Come,” a quarter windmill spinning in a storm. She’s mad, “Meet Deaf fist.”

We know that. That’s why we ran so fast. We’ll lose play time meeting all the Deaf we don’t know, and more time with the Deaf we do know as they tell us how much we’ve grown, how pretty my curly hair is, how jealous they are, and wish they had curly hair. Sometimes I hate my curly hair.

We’re finally free to play as Mommy’s Deaf friends move on to other topics, gossip, and storytelling. Chasing each other through the rooms, playing hide-n-seek, running up and down the stairs, we catch our breath in the kitchen. Incessant screams scratch our throats. Someone suggests we go out the back door and look at the Hobos in the alley. We all agree that’s a great idea. We don’t have to be quiet as we clomp down the back stairs, slip outside, and race into the alleyway. I’m the youngest kid here today and am quickly left behind as the others rush through the alley. Breathing hard, I switch to a walk. A Hobo who is curled up near a garbage can, lifts his head as I walk past him, “Hey girlie. You best get outta this alley. It ain’t safe here. Go home.”

The other kids are by the street now, laughing and having fun. I decide the Hobo is scary and turn to the stairs, returning to Mommy’s side.

“Where sisters?” She knows something is wrong.

“Go alley. Man tell me go home. Me scare.” I sign small, close to Mommy’s body, so the other parents don’t see me.

A Dad catches me signing to Mommy and lets out a howl as he stomps his foot. He runs down the stairs, out through the back door, and bellows out a blood-curdling screech when he gets to the bottom of the stairs. The kids are all inside in a couple of minutes. His hands fly so fast I can barely understand him, “Bad kids bad. Out safe not. Stay sit long time now, play no more, out again not.”

He turns away from us and returns to the Deaf group. As he joins the conversations, we are swiftly forgotten, and we take turns slipping away back into the coat closet.

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NOW…

I cling to countless fond memories of Deaf club life. We didn’t know we were Codas, we didn’t grasp why we had so much fun with each other. Our Deaf fiber wove its invisible threads between us. It did not demand our comprehension or even our loyalty. It just was.

As Deaf culture morphed through the years, I mourned the news of each club's closure as more Deaf children were mainstreamed and isolated. My heart ached for the loss of community for the Deaf, but also for the children of those Deaf. Where could they go to just be a kid? At Deaf Club we didn’t have to explain to anyone why our parents talked funny, why they were so loud, why they took two hours to say goodbye at the top and the bottom of the stairs.

Deaf Club closures didn’t just separate the Deaf, they separated the Kodas/Codas.

Utah is a rare State that maintains a Center for the Deaf and Hard of Hearing. Nostalgic for Deaf Club life, I attended many events there through years past. During one event I left the gymnasium and headed to the restroom. Every Koda in the place was running up and down the hallways, chasing, playing hide-n-seek, and shrieking like fishwives. The director of the Center stood at the end of a hallway and yelled at them, “Stop. Bad kids. Go your parents. No run in halls. No scream. No hide rooms.”

The Kodas stopped, turned away from her, and skulked back to the gym.

She spotted me watching her scold them. Throwing her hands in the air she knew they would return, and admonished me, “You hear. They come again play, you tell parents go get.”

My shallow smile was barely visible as I turned away, and thought, “Ha, that’s never going to happen.”

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P.S. Seems to me we could all use Deaf Club right now. A place

where we have bonds, belonging, and belief in each other. A place of inclusion.

She was raised by a mother who spent Mom’s early years outdoors, camping, traveling on horseback through the western United States collecting stones to polish and make into jewelry. Maurmee (as we called grandma) cooked simple meals on a campfire, and it turned out to be easier to prepare them all herself than take time to teach her daughters how to cook. And they never had to clean since everything around them was dirt.

Mom did attend Berkeley School for the Deaf for several years, but returned to outdoor living when Maurmee took the family to Tahiti to escape the depression. They lived off the land for another seven years.

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Thus, Mom journeyed into this marriage without the benefit of domestic training; a rarity for women of her age. Dad had no idea a woman would not know how to cook or clean. His expectation she develop skills made her angry. Her refusal to learn made him angry.

They collided from the beginning and never recovered from the crash. The mix of children into their lives served to escalate anger and resentment. My sisters and I were like oil poured into a frying pan to put out a fire; sizzle, spitting, and skirmish succeeded.

The marriage, and subsequent divorce, were a springboard Mom used to justify never learning to cook, “Hate cook. Daddy always mean, I don’t do.” As for cleaning she would say, “Dirt make it look like the antique.”

Hence, Mom did not teach us how to cook or clean. I’m not sure I missed it as I grew up. But she knew how to sign, she knew many Deaf, she knew she loved her world. I learned that from her. My fondest early memories are filled with Deaf surrounding me. I went everywhere I could with Mom because I knew there would be other wonderful Deaf women who did know how to cook, and who happily fed me.

Mom wanted to play.  She did not realize she connected me to Deaf family when she went to Deaf gatherings. Her play time became my family time. Hours of talking with her friends became my heart language. I was pulled into every event as part of the community. When we were at Deaf club, I was never on the fringe

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Those days, those Deaf friends, those clubs and picnics and parties created my Deaf self. For them all, I am eternally grateful.

Recently a friend asked me if I had been given the chance to be raised in a foster care family, would I have chosen to do so-to be away from all the abuse I experienced as a child.

Without delay I replied, “Absolutely not.”

Mom did not give me domestic skills, nor understanding about my hearing self. She wasn’t loving, and she rarely hugged me. Instead, she filled my life with signing, Deaf friends who enhanced the language she passed to me, and a community that accepted me as clan.

Love comes in many forms. Sometimes it is not easy to recognize. Mom gave me a place to belong. I love this place.

I have completed the ‘zero’ draft of my book. A major accomplishment since the challenges I faced to return to writing after a cancer diagnosis, treatments, and major surgery-which put me out of commission more than two years. (I will be starting the Curing Cancer Chronicles soon. Sometimes it’s difficult to turn back and look at those days. It’s in my heart, and pages will follow.)

Akin to those sprouts of green, seeds of words are calling me back to the page. I’m back; healthy within, heartily wiser, and happily writing.

As I return to these Substack pages I want to start on a positive note; angels seem appropriate. Myriad descriptions of Angels exist; divine messengers, spirit guides, Shoten Zenjin (a Buddhist referral), synchronicity, heavenly beings, supernatural beings, celestial beings-I could go on. I’ve had countless experiences through the years with angels and messages, as I’m sure you have too. I’ll start with one, move on to more later, and continue to expect these wonderful surprises in my life.

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Three days before New Year’s Eve, the temperature at our farm hovered at 3℉. Raymond set out to do the morning animal chores. After a mere five minutes, he called me on the phone, his voice suggestive of alarm, “Allyne, where are you?”

Immediately concerned something was wrong, I replied with a touch of panic, “The kitchen. Why, what’s wrong?”

“Hurry, get out here. You have to see this,” he replied without providing any clues.

The dish in my hands slipped into the water as I ran to the mud room, threw a coat around my shoulders, shoved my feet into my clogs, and darted out the back door. My heart was beating harder as I feared what I might see; Raymond on the ground, a trapped chicken, or worse, a dead goat. As I saw him standing by the goat pen, looking up, my fear altered-threatening to become anger.

“What?” I almost snapped.

“Look up, over there,” was all he said.

A sight I have never seen in my entire life loomed before me on the horizon of our small farm. I’m certain I gasped. All I could do was stand captivated by this glorious vision in front of me. “Is it a circle rainbow?” my feeble words reached Raymond.

“No, it’s three rainbows. Look closer.”

As our barn cats wove their bodies in and out of my frozen legs, I remained motionless. My brain searched for words that might come close to expressing the awe I felt of this view. None came to mind, so I simply continued to stand and stare. Fortunately, Raymond captured pictures; otherwise, who would have believed what we saw.

I’d never seen a rainbow like this, but it was all I could think to call it. For three months our triple rainbow has captivated us. Only this month have we discovered this was a type of rainbow, but not really - and what the hell does that mean? The event we saw is known as a Sundog.

The technical description according to meteorology, is a parhelion. A Wikipedia description1 revealed this information: “Itis an atmospheric optical phenomenon that consists of a bright spot to one or both sides of the Sun. Two sun dogs often flank the Sun within a 22° halo. The sun dog is a member of the family of halos caused by the refraction of sunlight by ice crystals in the atmosphere. Sun dogs typically appear as a pair of subtly colored patches of light, around 22° to the left and right of the Sun, and at the same altitude above the horizon as the Sun. They can be seen anywhere in the world during any season but are not always obvious or bright. Sun dogs are best seen and most conspicuous when the Sun is near the horizon.”

That is the technical, scientific description. I’ve since learned that the name Sundog comes from ancient Greece. When the Greeks saw this phenomenon they decided it was Zeus walking two dogs-since it appears as three circles. Hence the name, Sundog.

We saw this phenomenon shortly after sunrise on our very cold, flat pastures. The conditions of cold, reflection, and position need to be perfect to create a Sundog. Witnessing one of these events is considered a rare treat. We stood outside, freezing in the 3°F weather, until the circles had completely disappeared.

Months later I am still astonished at our perfect timing to witness this event.

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Sharing this incredible event, I sent pictures to my dear friend in Montana. Her response was perfect. “Oh Allyne, it’s like talking to Angels.”

I agree. Beholding this celestial event was categorically a message from Angels.