This month marks twenty-five years since my sister died of ALS.
Eleven years older than me, she had all the powers of an adult [or so I thought] but was more fun.
I inherited her green two-wheeler—too big for me to sit on and pedal at the same time but otherwise perfect—and a yellow cardigan that I wore with yellow stove-pipe jeans and white go-go boots. I was ten and the sweater came to my knees. It made me invincible.
She worked at Diana Sweets where she let me watch her copy menus on a Gestetner machine and later she worked at a greasy spoon near the canal where, when I’d run over to meet her after a shift, she’d pick me up and carry me back like a monkey.
She made the best toast I have ever tasted.
When she moved out I got her room. It was a nice room but I liked it better when she was in it.
For a while I phoned her every day to read her a joke from some book I got at the library.
Of all the people waving at the train station when I left for Edmonton, it was her that I was waving back at.
And when I returned, she was the first person I called.
On summer nights we’d sit in her yard, have a beer and talk about everything we hated and everything we loved.
When the disease got worse, I’d take her shopping in a wheelchair. I noticed the way people looked at her.
One time we drove to the beach and just sat in the car and she said she missed walking. I didn’t know what to say. I think on some level I was still pretending she could walk, that she just chose not to.
Eventually she couldn’t move. This is what ALS does, traps the person inside their own body while their mind continues to function perfectly well. Her only means of communication was very laboured, slurred words, hard to understand. And the effort exhausted her. So we organized conversations around questions she could answer by blinking once for yes, twice for no. Of course I couldn’t always tell if she was ‘talking’ or just blinking and sometimes the confusion made us laugh so hard we’d cry. I’d wipe her tears away first, then mine.
The last time I saw her she was a skeleton in the hospital, on serious morphine. I don’t know if she knew I was there or if she heard what I said to her; in fact I have no idea if I said anything at all…
A few million years ago, when we’d do the dishes together, she washed, I dried. Except for the big knife, which she washed and dried.
She liked roses, carnation, lily of the valley soap, and garage sales, and on rainy days, for fun, she’d pile her kids in the car and head to the countryside to look for deserted roads and puddles big enough to plough through at speeds that would render the windows thoroughly sploshed and the kids thoroughly thrilled.
She read cheesy books in the bathtub while eating chips and salami and had coffee with my mum every Tuesday.
She liked the sound of laughter in her house more than the sound of a compliment for décor or tidiness.
She was a master of chicken wings, potato salad, and lemon meringue pie.
And there was always room at her table for anyone who dropped by unannounced.