a love letter to the one i work to forget

Last week we ran a poem called thoughts that live in the hole of my brain by 17-year-old Lexin Zhang. “When I was young, I thought about my disability as being a literal hole in my brain,” says Lexin (above), who has cerebral palsy. Following is a sequel poem Lexin wrote. At the end, she explains more about why she wrote this piece.

a love letter to the one i work to forget (cp)
By Lexin Zhang

The moment I took my first gasping breath
You imprinted onto my mind
And you haven’t left me since
Every one of my actions are wrapped up in your fingerprints

In the world we were born into
People were trying to save me from you immediately
Therapy attempted to have me forget the feeling of you in my bones
But we were born to be together
For the rest of our lives
And no one else’s opinion really matters
(not even mine)

In elementary school, I was stopped in the hall by a teacher I’d known for a while
He said ‘hey, you look like you’re walking better, keep it up’
I’d hear it from doctors—family members too
And I couldn’t help but smile
Every single praise I got in spite of you
Buried you deeper into a hole
I was trying to muffle,
To snuff you dormant
So you’d be easier to cuddle
I tried to love you, but I couldn’t—
At least, not properly

Despite the needles
My mouth still struggles around your name
Your presence soaks my tongue, tinted in your tone
I never really had agency over my words anyways
My mouth still morphs, shapeless, to fit with lips it never got to kiss

I try not to look at pictures
Because we always seem so stiff, like we painfully don’t fit

They say that love isn’t gazing at each other
But rather looking outward, together
In the same direction
We never did that—
Too busy analyzing body complications
Trying not to fall too far away from the ground
Stepping over and on each other’s feet

We’re so close and you’re so unique
That sometimes, when I introduce myself
All people see is you, and not me
Sometimes, I too lose myself in the vast landscape of you

But we were born to be together
For the rest of our lives
And you’re determined to stay by my side
Convinced that we don’t need to hurt all the time

I think I am writing this to let you know
That I am trying to love you
Love the jagged lines and silhouettes that stretch out from our limbs
Our small shaky hands spread out, straining impossibly wide
Eager to prove just how much they can catch
The twist and curl of toes and wrists and fingers
Latching at nothing in particular
Love the turns and churns of neck and face to form blobby cracked words
Love how our sound has to rumble through the throat to burst into clumsy existence

I’m trying to love what we sculpt
Every bone protrusion is a new mountain in the landscape
Each elongation is a paint stroke in the sky
Tense hard muscles bloom out rolling hills
I just have to trust that it’s quite the view if you find the right window sill

I caused us pain birthed from both dissection and neglect
I need to listen more often
You’ve hurt me too but
In truth, you make me a better person
More understanding, hardworking,
More clear of my values
Isn’t that what a good relationship is supposed to do?

I worked to forget you, drown you, even
I’m working to love you, and not feel so threatened

Lexin

___________________


BLOOM: Why did you write this poem and how does it relate to the first?

Lexin Zhang: This poem was me trying to reconcile with my disability and all the negative thoughts I had towards it. I wrote the first poem for school, it was like a chance to purge my recurring thoughts. This poem came when my social worker suggested writing an alternate narrative. The poem is a step forward. It’s me growing and evolving and recognizing that the thoughts I had before weren’t necessarily healthy thoughts.

Throughout the poem, however, it’s clear that it isn’t solely positive. There’s a push and pull between dislike and love. Even as I was writing it, it was hard trying to love my disability. I’m admitting that I’m not treating it properly and that, in turn, means I’m not treating myself properly.

Personifying a part of yourself that you’re conflicted with is common, at least from the poetry I’ve experienced. I made it sound like I was speaking about a soul mate, someone I was trying to love, and in a way I was. Honestly, I liked the analogy; it worked in so many ways. Personally, it made it easier for me to engage with my disability.

BLOOM: The poem really speaks to anyone who struggles with parts of themselves.

Lexin Zhang: Ultimately, it’s about my relationship to my physical appearance. Regardless of disability, everybody has something about themselves that they don’t fully embrace at first. It’s kind of like that battle to try to love every part of yourself. Self love, I feel, is something we learn to do. It’s never perfect. There are days when it’s harder than others. Everyone tries to be better—this is my way of doing it.

BLOOM: You just finished the Youth@Work program at Holland Bloorview. This is a summer program where you do work placements in the hospital, as well as attend workshops and meet with a job coach. You said Youth@Work influenced how you feel about your disability.

Lexin Zhang: Yes. After doing Youth@Work I feel I’ve reconciled even more with my disability and, I don’t know another way to phrase it, but I’m not as ashamed of it in a way. Youth@Work made me realize I could present myself with a disability and it wasn’t anything I had to hold back. As I say in this poem, I wasn’t trying to muffle it. I wasn’t trying to make it quiet and not noticeable.

BLOOM: What was it about the program that led you to feel differently?

Lexin Zhang: The environment is safe and it feels like I can do things and be confident with who I am—every part, not just selected sections. I can push forward who I am as a whole, instead of just the parts I’m okay with, [while] blocking the parts I feel are negative.

The staff I worked with gave me a sense of ease and safety. I can’t even remember how I was before this. I don’t know if it’s just because when I’m here I feel more confident about myself, but I hope that transfers to the rest of my life.

BLOOM: So you think there will be a long-term impact?

Lexin Zhang: I think this will change how I view certain things forever. It’s a weird feeling to know you’re in a moment of vital change, in regards to who you are as a person.

When you’re surrounded with able-bodied people who are working so hard to achieve in school, you forget that it’s okay to be disabled or different. I’m trying so hard to line up with them, that I kind of forget that it’s okay to not be with them at the same level.

Being surrounded with people with different abilities at Youth@Work, you remember that you don’t need to be doing the exact same things as everyone else. Youth@Work reminded me that it’s okay to be disabled in every sense of the term, and it was an odd epiphany, a pivotal moment in my mind.

I know this will change the way I act or perceive myself in relation to society or other people. I won’t be able to fully grasp how the experience has affected me until I’ve seen all of it come to fruition later on in life.

Even though this poem wasn’t written too long ago, I feel like the way I feel now is different. I’m really thankful for that.