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My sister lives in this world but isn't entirely here Add to ...

My sister is going to be 48 this year. She has hair the colour of straw, thick as a horse's mane and straight as a broom. It's going silver now, one strand at a time. She's not tall, maybe five feet, and she's got sky-blue eyes and lashes that go on forever.

She is an innocent, because of trauma at birth. My mother says the umbilical cord was wrapped around her throat, and she got too little oxygen to her brain. The doctor used forceps to get her out. Mom said he was in a hurry to have breakfast with his wife.

The hard fact of life is that my sister's fate was made by somebody who wasn't paying attention and just wanted her out of the way.

Now, she lives in this world, but not entirely here. She can't read or write. She is dependent on caregivers for her motivation to get up in the morning, to wash, dress, do chores and activities. She loves to eat, dance, listen to music and trace the shape of letters on paper. She will do that for hours. Or she'll simply sit quietly. She doesn't need a picture book or anything to distract her. She can sit there like a Buddhist. Wasps never land on her, insects never bite her.

When Dad died a year ago, she asked my mother, "Who's going to be my bodyguard?" She meant "guardian." My sister has many such words and phrases that are entirely her own. If she wants sparkling water, she'll ask for that "fuzzy" drink. When she's reminded to relax, she'll say, "Oh, we'll play it by record."

She doesn't understand what many words mean. During a recent visit, I took her to a community dance event and on the way home I praised her for doing so well. She had arrived frightened and stiff, but she loosened up and we did what we have always done together - danced in the mirror of the other.

After a while, strangers approached and danced with us. At one point, a beautiful Indian woman came along and she and my sister improvised a spirit dance, like a moving prayer of love and gratitude.

Driving home, I said, "You know, sis, all those people were dancing with you because you have such a beautiful soul."

She cast me a sideways glance, looked at the road, then cast the glance again.

"Do you know what that means? Soul?" I asked.

"Nope. I don't know what that word means."

"What do you think it means?"

Her eyes lit up. "Spiffy dance clothes?" She was wearing a new T-shirt for the occasion and a pair of black leggings we had bought that morning at a shop down the street.

"No, it means you, hon. Your beautiful person."

"Oh!" Recognition now. "You mean my self."

"That's right."

Herself. Beauty does live among us, believe me. But her vulnerability terrifies me. I have nightmares that she'll get lost in an airport when travelling. This time, we opted to fly her first-class. It cost a lot, but let's get our priorities straight. If she who cannot read or write is going to put her trust in the kindness of strangers, get on a plane and fly from Calgary to Toronto so she can visit her sister, she deserves a front-row seat, in the aisle, if you please, for easy access to the washroom.

And yes, you may have to wait 20 minutes for the bathroom while she gets her pants fitted just right, but that's the price we all pay to have royalty on board.

After five days with her, I was exhausted. I have infinite regard for people who do this for one another, for their sons and daughters, sisters and brothers, mothers and fathers, in our nuclear age. This is not a society that is organized to look after those who have special needs. We are not a village. Even extended families are extended all over space, with lives of their own and huge plate-loads of concerns. When I'm walking around the neighbourhood with my sister, going into shops and to the market, I am painfully aware of how few people are actually present to her - and I wonder if there isn't a relationship there, between her lack of presence and ours.

After the community dance, I came home and realized that I had been wearing the price tag on my own black leggings. While I was prancing around feeling quite an impressive dancer, I was wagging my little tail. I said to my sister, "Why didn't you tell me?"

She thought it was kind of funny. Her big sister had done something totally embarrassing. It doesn't happen every day. "Hey, what kind of sister are you?" I said. "Don't you think I would tell you if there was booger coming out of your nose?"

She chuckled. "Sorry, Michelle. Ha-ha."

Before my sister was born, when I was 8 and had only brothers, I wished for her on every first star. Now, I thank my lucky stars for her. She has done so much for our family. We're all such big egos, so full of opinions and arguments. My sister hasn't got any opinions about anything. She has no ideology or theology, no "ology" at all. It's all about the moment and how you're making her feel right now. She'll burst into tears like a spring if you're unkind to her, and she'll bloom like a rose if you're sweet.

I spent my childhood sitting in church listening to sermons about Christ our Saviour while the only real angel I've ever known sat beside me, in her Buddha silence. It's my sister who will ensure that I remain faithful and trustworthy, kind and compassionate - and, above all, fascinated by her innocence.

Michelle Tocher lives in Toronto.

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