Thursday, August 24, 2017

thoughts that live in the hole in my brain

By Louise Kinross

Lexin Zhang is a 17-year-old student participating in Holland Bloorviews 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, Id 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 didnt make mistakes?

In a universe where thats true
Im a dancer, or maybe an athlete.
I dont have thick strained words
That tumble down my tongue,
That I, and others, shy away from.
I hold drinks at parties, I dont feel heavy.

Whats 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.
Id call the country I was born into, home.
Live my life there. Love where Im from.

What thats like, I dont really know
Because I cant 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?
Wed pretend to be vets, spies, superheroes, bakers
Wed pretend to be mothers;
Though we could just be pretend mothers,
Because holding a baby with two hands doesnt 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, Im silly, and I still worry.

As a child, I once said, I should have died at birth
So my mother wouldnt have to suffer
More than she already had.
If those nerves werent dead,
Would I feel less like lead?
Feel limitless, and not tie my failures to the misuse,
Abuse, of her hard work?
Shed be overseeing the constructions of skyscrapers,
Claiming her rightful piece of the sky, not spending years
Making sure that I
Didnt 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.

Id 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 Im not looking,
His soft eyes are brimming with tears, thinking
Who Id be, without my cerebral palsy.


BLOOM:  Why did you write this poem?

Lexin Zhang: These are thoughts Ive had since I was young and theyve lived in my brain. When I was young, I thought about my disability as being a literal hole in my brain. But its metaphorical too. These things live in the deepest part of my brain, and I have only thought them to myself. Theyre 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 dont 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 dont 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 dont feel as light as when youre 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 Ive encountered a lot more physical issues as Ive 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 Im like that. Itabout 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. Ita 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 didnt 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: Its 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 Im every bit of who I am because of my disability.

BLOOM: Its a factor when things are hard, and its 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 its very easy for people who arent 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, theres no way for them to know I dont have a developmental disability as well. I constantly felt like I needed to win people over and compensate with academia. Prove to them that Im 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 doesnt 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: Wed probably never have babies because wed drop them. Were not good at holding things. Its funny. But its 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? Youre 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: Were going to run a second poem of yours next week, which is a sequel to this one.

Lexin Zhang: I was talking to Lisa, whos 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.


Lexin, your words in both your first poem and your second are exquisite. As a mother of a son who has characteristics similar to yours, I can very much relate to what you've felt emotionally and physically. I hope you realize that you are an extremely gifted communicator. Maybe in spite of, or because of, your disability (who's to know?) , you are above average at articulating thoughts, feelings, and probably a whole lot more! Your metaphors are wonderful. I hope you take your skills and soar.