The journal of Sophie Adler

September 20th

You already know me, Sophie, so I guess you want to know about the rest of my family. There are three others: my mother, my father, and my big sister, Elizabeth, who we all call Libby. Dad looks after Mum, Mum looks after Libby, and Libby just looks. Literally. Because all she can control properly are her eyes.

Libby’s paralyzed; has been from birth. But you’d be amazed how much a person can communicate just using her eyes if she’s as smart as my sister Libby.

Our parents say that even when she was a baby they could always tell what she was thinking because she would look at them so intently. Once she started going to school, Libby learned to communicate by blinking whenever the teacher pointed to pictures like a glass of water (meaning “I’m thirsty”), a book (meaning “I want a story”), or a clock (meaning “What time is it?”), or whatever. So Mom and Dad made their own symbol sheets at home with pictures like all her different sweaters, so she could choose which one she felt like wearing, or a bowl of soup, or the bathtub, or our dog, Baxter.

When she was older, Libby learned to write by blinking when you pointed to the correct letters, so she could send thank-you notes for birthday presents and letters to her pen pal in Japan. She did math the same way. But this method required another person to help her, so sometimes she got frustrated. Anyone would –imagine having to go through twenty-six letters each time you wanted to spell something! I get frustrated with how long it takes me to get my own thoughts out sometimes, even though I talk pretty quickly (too quickly, according to my Grandma Ruth, who can never understand anything I say to her on the telephone).

Conversations with Libby in the old days were really S L O W but things improved when her school got what they call “assistive technology”: these amazing devices that help you control a computer just by staring at the screen. We finally got one at home last year. I like using it myself; it’s fun in a trippy, space-age kind of way. I wouldn’t be surprised if in the future we control a lot of machines that way, or at least the lights and the TV and stuff like that. On and off at a glance. Pretty cool. So now Libby can write stories and poems on her own – currently she’s obsessed with a writing project she’s working on that she refuses to show us. And she can also go on Facebook and watch videos on YouTube like any other teenager. 

Of course, my sister isn’t really like other teenagers because she’s got cerebral palsy. According to Wikipedia, “Cerebral refers to the cerebrum, which is the affected area of the brain (although the disorder may involve connections between the cortex and other parts of the brain such as the cerebellum), and palsy refers to disorder of movement.” In other words, she has problems in her brain that affect her ability to move. Nobody knows what caused those problems or how to fix them. All we know is that they began either before, or during, or shortly after birth.

Which means that the major cause of cerebral palsy is being born. That’s the major cause of all of humanity’s problems, as far as I can tell.

A less polite term for Libby’s condition is that she’s spastic. Everyone knows what a “spaz” is, right? The girl with glasses who can’t shoot hoops gets called a spaz. The boy with asthma who can’t play hockey gets called a spaz. But genuinely spastic people would never find themselves on the basketball court or at the hockey rink in the first place. Genuinely spastic people can’t control their movements at all; they flail all over the place and waste a lot of energy trying to do simple things like putting on socks or lifting spoons to their mouths. Libby can’t do those basic things – even swallowing Jell-O is an Olympic event for her.

Also, people like my sister can’t speak clearly enough for other people to understand them, no matter how hard they try. Libby tries, she tries all the time, but she can only get out a few recognizable sounds. Like “Ba.” For Libby, “Ba” is a magical word. It can mean book, or ball, or bird, or boat. “Ba Ba,” is pretty obvious, right? Especially since she says it every day when the Wheel-Trans comes to take her to school. But “ba ba” also means pasta, and baby, and sheep, and bubble, and button, and butterfly.

It’s pretty cool to see how many words my sister can make with that one simple sound. My best friend Victoria Lee says that’s how the Chinese language works: one sound can mean a lot of different things depending upon how you say it. (Vickie speaks Chinese at home with her parents and also goes to Mandarin classes every Saturday and is pretty much an authority on everything anyway, which is to say that even if she didn’t speak the language herself, I would still believe what she said about it.) So maybe life would be easier for Libby in China.

I doubt it could be harder. Libby’s almost died a few times already and she’s only sixteen. One of my earliest memories is going to see her at the hospital when she had a bad lung infection from aspirating food, which means inhaling it instead of swallowing it down into your stomach. This is one of the worst things that can happen to people who don’t have good control of their muscles. I was four years old when my father tried to explain to me that my big sister might die. That was pretty hard for to understand, even though by then I had lost my grandpa as well as a couple of Siamese fighting fish, so I knew that “dying” meant that people disappeared and you never saw them again.

Kids don’t have much control over anything but still, someone going away forever doesn’t make sense when you’re little because everything else stays in its place: trees, houses, furniture. When flowers die in the winter, they come back the next spring. But dead people don’t come back. Not in the spring. Not ever.

The Discovery of Flight

A novel by Elizabeth Adler

Chapter one

Aya the hawk wakes when the first rays of the sun warm the treetops. Stretching her neck, she blinks her beautiful golden eyes and cocks her head to listen. The dawn chorus has begun, and a song of praise rises through the canopy.

This is how every day begins for Aya: heat, light, and music welcome her back to her community. She likes to rest quietly for several minutes on her perch, letting the outlines of the world fill in. Remaining motionless helps her to see and feel things clearly. Those who rush around, always busy, always anxious, miss so many variations of colour and smell and sound. The sky already blue at the horizon; leaves stroking each other like green feathers; the chatter of insects under bark; the rustling of small mammals in the grass far below about to assume their struggle to survive.

Life is not much of a struggle for her, having no predators but humans and the occasional berserk owl. But she respects the lives of every creature, even those she enjoys eating, and is fond of imagining their daily routines: a garter snake unfurling from an impossibly small crack between boulders to bask in the warmth of the sun; a mother mouse gently washing her babies’ faces with a tongue like a little pink caterpillar; fox kits scrambling out of their den, fur glowing red against the ferny undergrowth, their black-tipped ears twitching, the vivid white of their necks as they wrestle with each other. No one who lives in the forest is strange to her.

Then a new sound reaches her. An unfamiliar one. Many voices, confused, crying, frightened. Curious, she unlocks her talons from the branch they have clung to all night, preens her feathers and then shakes her wings. Her body thrills to know it will soon be in motion, freer and faster than anyone else.

The noises down below first increase and then stop altogether as smaller mammals and birds take shelter at the sight of her, but the hawk’s interest is elsewhere. Aya takes flight towards the distant houses of men: houses which are made of wood but strangely dense and leafless, square and flat.

What is the point of using wood – beautiful living wood – to imitate dead rocks? And why do humans insist on living together long years after their young have grown up? It seems that they are trappedin those houses, enclosures that stink of sweat and cooking food. Who would want to live like that instead of under the stars in the fresh night air?

But today, a different smell drifts up to her. Smoke! Smoke always signals danger to the creatures of the forest so her heart beats faster, in time to her powerful wings, as she seeks its source. Grey clouds billow up at the edge of the ploughed furrows where she sometimes finds nibbling rabbits and fat field mice. And in the fields she can see many people huddled together, sobbing, while their wooden houses burn to the ground.