thoughts that live in the hole in my brain

By Louise Kinross

Lexin Zhang is a 17-year-old student participating in Holland Bloorview’s Youth@Work program. This is a poem she wrote about having cerebral palsy. Following the poem are some questions we asked her.

thoughts that live in the hole in my brain

By Lexin Zhang

When I was a child, I’d fantasize a world of ‘what ifs,’

Like, ‘what if I was famous?’ ‘what if I could walk over lakes?’

‘What if the hole in my brain

Where the dead lay

Was no longer an empty grave

But littered pink with thousands of cherry blossoms?’ or,

‘What if doctors and nurses didn’t make mistakes?’

In a universe where that’s true

I’m a dancer, or maybe an athlete.

I don’t have thick strained words

That tumble down my tongue,

That I, and others, shy away from.

I hold drinks at parties, I don’t feel heavy.

What’s it like to not be balancing on a tightrope,

Knowing that the one thing I can do, for certain, is fall?

Painfully familiar with the word ‘almost.’

Instead of wishing that no string

Hung over the Atlantic, leading back east.

I’d call the country I was born into, home.

Live my life there. Love where I’m from.

What that’s like, I don’t really know

Because I can’t live in a country, attend an education system,

That would retch me up like mucus and bile,

As if I were something senile.

So, I stay parched, trembling in one cramped position,

And sometimes I wonder.

What would it be like to not worry

If I worked hard enough,

If my persistence was enough.

Hiding behind piles of compensation, for my body

To not be seen as a mirror of my mind.

When I was eight, I had a best friend.

The game we played every single day was ‘what if?’

We’d pretend to be vets, spies, superheroes, bakers…

We’d pretend to be mothers;

Though we could just be ‘pretend mothers,’

Because holding a baby with two hands doesn’t work

If you have one on a walker,

Or one outstretched to balance,

To anticipate the fall, the failure.

Looking back; I was silly,

Having spent my childhood worrying about

How people saw me,

How arms were supposed to wrap around a body of such complications.

How I was supposed to live alone.

Sometimes, I’m silly, and I still worry.

As a child, I once said, ‘I should have died at birth’

So my mother wouldn’t have to suffer

More than she already had.

If those nerves weren’t dead,

Would I feel less like lead?

Feel limitless, and not tie my failures to the misuse,

Abuse, of her hard work?

She’d be overseeing the constructions of skyscrapers,

Claiming her rightful piece of the sky, not spending years

Making sure that I

Didn’t end up twisted on a bed for the rest of my life.

Maybe my father would feel more ease

In his chest when he looks at me.

I’d fishhook my fingers onto the corners of my mouth

To form the word ‘sorry.’

My grandfather and I, we are a lot alike;

Every time he watches me when I’m not looking,

His soft eyes are brimming with tears, thinking

Who I’d be, without my cerebral palsy.

____________________

BLOOM:  Why did you write this poem?

Lexin Zhang: These are thoughts I’ve had since I was young and they’ve lived in my brain. When I was young, I thought about my disability as being a literal hole in my brain. But it’s metaphorical too. These things live in the deepest part of my brain, and I have only thought them to myself. They’re dark thoughts that are tinged with instinctual emotion.

BLOOM: When you refer to the string over the Atlantic, what do you mean?

Lexin Zhang: It was a lot of frustration toward feeling like I was not exactly belonging in any society, whether that was where my family was from, or where I grew up. I would prefer not to be specific about my experience because I don’t want to influence the way readers interpret it. I want it to be applicable to [everyone] in some way.

BLOOM: This is a beautiful line: ‘I hold drinks at parties, I don’t feel heavy.’ Does your cerebral palsy make you feel heavy and weighed down?

Lexin Zhang: Yeah. Because I think especially as you get older you don’t feel as light as when you’re younger, when you ran around better. As you get older, you feel like your limbs are heavier. You try to do stretches and do physical things to deal with that, but I’ve encountered a lot more physical issues as I’ve gone through my teenage years.Though, the feeling heavy part is mostly to do with figuratively feeling weighed down and hindered from doing things, sometimes simple things, that I want to do.

BLOOM: You talk about falling in the poem.

Lexin Zhang: The falling down is literal and metaphorical, because I’m like that. It’s about literally falling down as a child. More so now it feels like learning that I fail at things, and indirectly disability is a factor to do with the failure. It’s a part of me and it does deter me from doing certain things. When I wrote this, I was in the thick of what I considered failure so I didn’t want to appreciate the challenges, and failures, I was met with.

BLOOM: But just as your experience with disability has been hard, that experience has also shaped you in phenomenal ways.

Lexin Zhang: It’s a part of you that forms your personality. Whether I succeed or fail, disability makes a contribution. I could never find myself fully relating to people who say that they 'are x y z, despite their disability.' I always feel like I’m every bit of who I am because of my disability.

BLOOM: It’s a factor when things are hard, and it’s a factor when things go really well. In what way do you think people see your body as a mirror of your mind?

Lexin Zhang: I think it’s very easy for people who aren’t familiar with people with disabilities to take me at face value. Humans naturally judge and categorize. When they see the way my body moves, or if I open my mouth to speak, there’s no way for them to know I don’t have a developmental disability as well. I constantly felt like I needed to win people over and compensate with academia. Prove to them that I’m intelligent and articulate.

BLOOM: You write about how when you were eight, you and your friend imagined your future and in addition to talking about careers, you talk about being ‘pretend mothers.’ But then you say in your case it would always be pretend because ‘holding a baby with two hands doesn’t work if you have one on a walker.’

Lexin Zhang: That was definitely one of the more secret thoughts I've had. I only really discussed it once, that time with my friend [who also had a disability]. It was in a joking, but real way: ‘We’d probably never have babies because we’d drop them. We’re not good at holding things.’ It’s funny. But it’s also kind of sad. Society likes to tell us that we need to do certain things at certain points of our lives. And as a child with a disability, you look at that and think ‘how am I going to do that?’ You’re always thinking how am I going to live independently, never mind how am I going to have a family or do things that are considered important in society.

BLOOM: We’re going to run a second poem of yours next week, which is a sequel to this one.

Lexin Zhang: I was talking to Lisa, who’s a student who works with the social worker Gabriella. Lisa suggested I tell myself a different narrative. Not necessarily positive, but from a different angle. Me coming to terms with my whole disability, not just parts of it.