poetry

Invisible. {poetry}

 

I don’t often write about my experience with chronic illness. In fact, I’d testify that I pretty much never do unless I’m crowdfunding for my expensive medical treatments.

That’s a huge chunk of my life left without a voice. That’s six years, the loss of independence, having to stop mid-MFA, losing my identity as a world-traveler, artist and academic. It is heartbreak, loss, alienation, isolation, pain. So much pain interspersed, of course, with joy and loving-kindness, and reassessing my identity — because I refuse to identify with my illness more than I have to.

Lately I’ve been wondering why I couldn’t give a voice to the intensity of these experiences. The keyword is intensity. I told myself (and others) that I wouldn’t write about my disease because I didn’t want to give it any more of myself. Writing is my sacred space. But, that was a cop-out. It was too much, too heartbreaking for me to write. How do you give words to pain?

So, in order to heal from the trauma of illness, I decided I needed to give it due respect. I decided to let it into my sacred space, if only a trickle at first. I started by focusing on the external — on the feeling of being cast out of society and the anger that arises from the alienation of falling through the cracks.

***

Invisible

How are you, you’ll ask

but your eyes will have glazed

over before my answer’s begun

so I’ll answer, I’m fine,

I’m okay, thanks for asking

I’ve learned to lie

I’ve learned to hide

the truth

because you ask

but don’t listen

you’ll sympathize

but can’t empathize

you’ve become numb

to my Not okay.

 

And maybe my dis-ease

causes you discomfort

an uncertainty about life

a reminder of your fallibility

And through all of this

I’ve become invisible

You can’t see my disease

my skin is clear, pallid

but I still have my hair

and though I often use

a walking aid, embarrassed,

self-conscious, I avoid

drawing attention, “But you don’t look sick,”

“At least its not cancer,”

“Well, you look good to me,”

“If only i looked so good

when I’m sick

with the flu,”

“At least its not terminal,”

“I have a friend whose friend’s sister

got better using…”

 

Oh, you’re right,

thank you for enlightening

me on my condition

thank you for minimizing my

affliction that will see me

through to my very end.

Thank you for your compassion.

You can’t see my suffering

because I am alone

in a darkened room

curled up and writhing

I’ve become invisible

when I come out of hiding

on a good-pain day

I grin and bear it

in my isolation

we’ve become strangers

so you believe the lie,

it’s easier.

 

And when you ask how I am

I’m tired of the pretense

I’m tired of your indifference

I don’t have the energy

to politely pretend

for your comfort

your eyes have glazed over

before I begin

but I answer anyway

the brutality of my truth

my pain and suffering alienate you.

 

But you weren’t really there to begin with

when I can’t eat what you eat

and I can’t get on the piss

when I can’t participate

in all the hedonism of being

twenty-something and carefree

or the adult-ing of being

thirty-something with a job,

a mortgage and kiddies.

We no longer relate

because I don’t look sick

and you’re tired of my complaining

you have your own shit to deal with.

 

My invisible disability has slowly

erased my social identity and

I can hate you for your narcissism

or lack of compassion

but I don’t have the energy.

I can feel minimized in the

shadow you cast

or I can be so much bigger,

so much brighter on my own.

***

Andrea Sheldon is a writer and visual artist living with chronic illness. She is currently working on a book of poetry and her first novel. Andrea lives in Sydney, Australia, with her little wolf pack, where they don’t frequent the beach as much as they should. You can find fragments of her on Instagram and Twitter.

***

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