Autoimmune Diseases · Lupus

Fair

By Nicole Kiss

“Fair” is important when you’re fifteen,
And it didn’t seem fair to be in that bed
During Christmas
Or that I couldn’t breathe without a machine
When you’re fifteen,
Your body feels too private for your mother to be bathing
But it’s humbling when she lifts you, naked, into a tub
Like you’re a newborn baby
And there isn’t much to think
Except that you’re in pain
You think through your nerves
You talk through clotted veins
You don’t know you aren’t invincible
But you don’t care that you don’t know
As long as the drugs pump every 6 minutes
And your thumb controls the flow

When you wake to your own screams,
They schedule an MRI
On the dimly-lit basement floor
The woman who wheels you there
Is smoking a cigarette
And leaves you, alone, outside the door
What the resident doesn’t understand
Is that you can’t catch your breath
And the jackhammer sounds are painful
And you panic with that cage on your head
He sighs when you hit the panic button
Three times in 45 minutes
But I am guessing he doesn’t know
What it’s like to have blood clots
Where air should be
And now, maybe, in your brain

The morphine causes fog
So the talk is just a blur
And not “the talk” you should have at fifteen
But the one where “there’s no cure”
And all the comfort you found in “this is temporary”
Becomes a waking sleep
You dissociate for days
And miss your own release
Note to self: don’t watch medical shows
After getting out of the ICU
Because you might find out you almost died
By seeing someone die from what happened to you

And it isn’t cancer
Which is apparently a litmus test for severity
The utmost respect to anyone suffering through that
But this is a chronic disease too, not just a cancer parody
And they can’t see the blood or the scars or the bandaging
So everyone decides that you’re fine
So, they don’t get why you aren’t up for activities, a week out of surgery
And you have to decline
I thought saying “No” was enough
That you didn’t need a “good” reason
And you don’t, unless you have an invisible excuse
Then you’re just looking for attention

When you’re fifteen,
you can’t imagine that at twenty-four
Your body would be such a burden
That there would be paperwork to prove your life is important
But you still can’t get life insurance
And after nine years, you still can’t decide
If it would have been easier if you’d succumb to the clots
If your kidneys had failed
If you had died
People mourn when a fifteen year old
Dies of some random disease
But I think the drama people eat up
Fades when you turn eighteen

 

 

 

Nicole Kiss is an explorer of art forms. With a BA in Music and Psychology from Greenville College, she utilizes music, poetry, and drawing to express her struggles with depression, anxiety, and lupus. She hopes to someday pursue a degree in counseling to help others and pass on the creative coping she’s picked up along the way.

For more information about lupus, you can check out MedlinePlus.com or the National Institutes of Health.

Autoimmune Diseases

After Surgery

By Sean Thomas Dougherty

Forget the red berries on the snow. Forget how you were hungry but couldn’t eat, and the nurse who never came soon enough with the morphine. Forget the pain. Your pale face like a small moon. Your hair unwashed and unbraided, and all the papers they made us sign like citations. And the long walk from the parking lot in the snow, nervous I would not see you again, as I drove our daughters to school then rushing back across town to hold your IV’d arm. To wipe the drool from your mouth. And then more doctors, and the veins they couldn’t find. The holes they left in your arms. And the tests that told us nothing. And then another surgery, and another, and another then it was time to go home, because we had one. With lists of appointments like citations, your limbs bandaged and bruised. Before we left, I glanced out that seventh story window, down at the street of strangers rushing off to the normal world.

 

Author’s Note: My life partner, Lisa Akus, suffers from a rare auto-immune disease that has caused her great and constant pain for many years, and more than once brought her to near death.  Without the help of the State of PA and its healthcare system she would have died long ago, leaving our two daughters without their mother.  But she is tough and brave and goes on despite those in this country who would kill her and the millions of our bravest and most vulnerable citizens, kill them for pocket change for the rich.

Some of the poems in my next book The Second O of Sorrow due from BOA Editions in 2018, directly address Lisa’s illness and the daily struggle of it.

 

 

 

Sean Thomas Dougherty is the author or editor of 15 books including the forthcoming The Second O of Sorrow (BOA Editions), Double Kiss:  Contemporary Writers on the Art of Billiards (2017 Mammoth Books), All You Ask for Is Longing: Poems 1994- 2014 (2014 BOA Editions) and Scything Grace (2013 Etruscan Press). His awards include two Pennsylvania Arts Council Fellowships in Poetry, and an appearance in Best American Poetry 2014.   He works as a med tech and caregiver for people with brain injuries in Erie, PA.

 

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