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.
Her name was Mary.
Matilda Magtree 
Happy that you have such beautiful memories of your sister.
Thank you so much, Jeanne. She was the ultimate older sister. (:
Carin, this is a lovely remembering. Thanks for sharing your sister– and your missing her.
Thank you, Maureen. I’m grateful it was a good relationship, albeit too short. I think about sisters who can’t stand each other for decades…
Agreed–thank you for sharing your memories. She sounds like a wonderful person.
She was, Erin. But then being eleven years apart… there’s not a lot of sibling rivalry. (:
Lovely indeed. Warm thoughts to you.
Warm thoughts received. Thank you so much…
Sad and lovely. Life is hard and beautiful. Thank you for sharing this. xo
All the more reason to embrace it… Thank you for this.
So eloquent, so economically written: a whole life and so much love and laughter in these few short paragraphs. I recently lost a good friend to ALS so your piece – while utterly your own and your sister’s – was very moving for that reason as well.
I’m so sorry about your friend, Elizabeth. A terrible disease. I hope they had the benefit of some equipment, communication and other kinds. Years ago, there wasn’t much of anything, hence the invention of ‘blinking’…(: Not that one option is really any better than the other. Thanks for such kind words.
It went more quickly than I think ALS usually does and was not diagnosed until near the end. He was flown home from Quebec and the hospital here set up an Innu tent outside but near enough for him to be in the tent with his family and friends yet also connected to hospital equipment and care. I think it was actually quite remarkable that the hospital did that and it meant a lot to everyone.
Thank you for your kind words too.
Beautiful words and photo. Thank you for sharing.
Aw, thank you… (:
A moving, loving tribute, Carin. I can’t begin to imagine your pain or how painful it must have been to write this. How I wish you had had more years together.
Thank you, Cheryl. True enough, I miss her, but the memories are sweet and I’m grateful for that. xo
Thank you Carin.
And to you too… xo
what a vivid loving tribute.
Thank you. So much. (:
I did not want your story to end.
Neither did I…
Thanks, you.
You were fortunate to have had such a wonderful relationship with your sister–perhaps even more fortunate in knowing it. Thank you for writing about it.
“Perhaps even more fortunate in knowing it.” I never thought of it that way. Thank you…
An absolutely beautiful piece Carin. Clearly she would have delighted in and appreciated your companionship more than words can say. What a tribute.
Why thank you, Allison. It’s always a wonderful feeling to relieve those memories.
My whole life I’ve wanted an older sister, but I never imagined the potential heartbreak of losing her this way. I love the way you’ve captured the simple, everyday joys of your relationship with Mary – the hand-me-down sweater that made you invincible, her masterful toast. Memory eternal.
Leslie