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My father’s hands

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Photos: Rebecca Dingwell

Photos: Rebecca Dingwell

“I have some bad news about family health,” my mother said.

Was her cancer back? Was Poppy Neil’s Alzheimer’s finally ending his life?

It was the evening of December 5, 2013, and the first semester of my third year at University of King’s College was ending. It was damp and cloudy, but there was no snow that night. I didn’t think it was odd for my mother to want to treat me to dinner at La Frasca; it’s one of my favourite restaurants.

I took a breath. “OK.”

“Your father has ALS,” she said.

ALS?

All I could think about was the commercial that aired several years back. It showed a man slowly deteriorating while a woman sang the children’s song “Head and Shoulders” in the background.

“ALS destroys your body one part at a time,” it said. That’s all I knew about the disease.

I started to sob. As the “walk” symbol lit up on the streetlights, Mom guided me across the road.

Mom explained they had known Dad was sick for a while, but waited to tell me until my classes were done for the semester.DSC_0562-resized

We reached the corner of Spring Garden and South Park. I needed a moment. I outstretched my arm and laid my hand flat on the window of the Eastlink store. I remember thinking if I moved that hand, I would collapse. Mom held my other hand and tried to comfort me. I wasn’t listening.

Head and shoulders, knees and toes…

But we had just biked together! I’d always struggled to keep up with him on the Sackville trail.

A man wandered up to us and asked for spare change. Mom shook her head and rolled her eyes.

…Eyes, ears, mouth and nose.

I managed to stop crying, and tried to be as light-hearted as I could in the restaurant. Mom said they’d told Nana. Dad’s siblings knew. My cousins knew. My brother Chris knew. They all found out before I did.

I ordered a glass of wine.

When I got home that night, I texted my dad that I loved him. Then, I did exactly what my mother told me not to do: I Googled ALS.

ALS stands for Amyotrophic lateral sclerosis. Many people still call it Lou Gehrig’s disease, after the New York Yankee who died of the illness in the ‘40s. Who would want to attach someone’s name to that?

The ALS Society of Canada defines ALS as “a disease in which nerve cells die and leave voluntary muscles paralyzed.”

There is no cure. There are no effective treatments.DSC_0281-resized

There are 946,759 people in Nova Scotia. Sixty-five to 85 of them have ALS. Somehow, one of those people is my dad, Ron Dingwell.

Dad’s diagnosis came about four months after his retirement party. It was so unfair. For 35 years, my Newfoundland-born father worked for the Royal Canadian Mounted Police. He did tech and communication work, and he did it well.

“If I can grow up to be half the man my dad is, that’s pretty damn good,” my brother Chris had said. Chris was studying Informatics at Dalhousie.

The year following the diagnosis was one of pain, but it wasn’t all bad. My year-long relationship ended. We had our last family vacation. My parents moved from the house they’d lived in since I was 12. The “ice-bucket challenge” became a trend. I finished my Honours Project.

One night at the Fireside restaurant, I leaned to my right. “Can I see your tattoos?” I asked.

It was a Sunday; my brother Chris was graduating the next day.

Chris pulled up his short sleeve to reveal his first tattoo. “Love, Mom,” it read in her small, curly handwriting. Dad’s signature on the opposite arm hardly looked like cursive. His letters were much more straight and choppy.

I smiled and glanced across the table at my new boyfriend, Alex. My family met him for the first time that night.

When the server placed my raspberry brie-stuffed chicken in front of me, my concern for Dad came back. I knew he couldn’t eat his salmon on his own. But as Mom helped him eat, none of the other customers stared.

Dad could walk on Chris’ convocation day. When I graduated a year later, Dad could barely walk at all.

I can still hug him, but he can’t hug me.

  • Judy McGarvey

    aLS is a terrible disease .The Ice Bucket raised lot of money and more research is being done. i,m living with it too and i fel we need legiislation to allow Candian ALS people get a diaphragmatic pacer that will keep a person off a ventilator longer. They do it in the US for ALS. People as well as quadraplegics. In Canada they only do it on quadrlegics i believe. well i would like to stay off a ventilator with a diaphragmatic pacer. I think persons with ALS are worth the investment. Good article you wrote.

  • Bonnie Jarvis-Lowe

    My brother, David Jarvis, is a friend of Ron Dingwells. He dearly loves his friend and they have a special relationship. We also have a good friend here in Newfoundland that has ALS. It is a cruel and heartbreaking disease, but both of these people, living with ALS, have shown strength of spirit and a desire for life, no matter what. Hopefully strides will be made in research, so that this disease will come to an abrupt end, and those afflicted can be helped greatly. It is my prayer and my wish and my hope that this happens soon.

  • Bonnie Lowe

    My brother, David Jarvis, is a friend of Ron Dingwells. He dearly loves his friend and they have a special relationship. We also have a good friend here in Newfoundland that has ALS. It is a cruel and heartbreaking disease, but both of these people, living with ALS, have shown strength of spirit and a desire for life, no matter what. Hopefully strides will be made in research, so that this disease will come to an abrupt end, and those afflicted can be helped greatly. It is my prayer and my wish and my hope that this happens soon.

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