Epilepsy Talk

The Impatient Patient | November 14, 2025

Why do they call us “the patient”

We are not patient. We endure.

The anxious tedium of public hospital

waiting rooms, because waiting

is the punishment of the poor;

interminable buses to inconvenient places

where we count up our cash, calculating

whether we can take a cab home

instead of riding our exhaustion;

the angry contempt of specialists, taught to believe

any pain they cannot explain is insubordinate,

deliberate, offensive.

We are not patient. We are denied.

Not medically necessary, they say, not proven.

Feel free to appeal. We are experts at appealing,

so we begin again, gathering documents, faxing releases,

collecting letters and signatures,

giving our numbers, all our numbers,

to dozens of indifferent, underpaid clerks,

stacking up evidence for the hearing, where we will declare

as civilly as we can to the affronted panels

that it is necessary that we breathe,

sleep, digest, be eased of pain, have medicines

and therapies and machines,

and that we not be required to beg.

While I am waiting, I am using my pen,

steadily altering words.

Where the card says “medically indigent”

I cross it out and write indignant.

Where my records say “chemically sensitive”

I write chemically assaulted, chemically wounded,

chemically outraged. On the form listing risk factors

for cancer, I write in my candidates: agribusiness,

air fresheners, dry cleaning, river water, farm life,

bathing, drinking, eating, vinyl, cosmetics, plastic, greed.

I am making an intricate graffiti poem

out of mountains of unnecessary paperwork.

Where the doctor has written “disheveled” I write untamed.

Where it says “refused treatment,” I write refused to be lied to.

Where it says safe, side effects minimal

I say prove it. What do you mean minimal?

What do you mean side? I write

unmarketed effects unmentionable.

Where it asks, authorization? I write inherent,

authorized from birth.

Are you the patient? she asks, ready to transfer my call.

I say only with my own sweet, brave body.

I say, Not today, no. I have no patience left.

I am the person who is healing, I say,

in spite of everything. I will have to put you on hold she says.

Yes, hold me I say. That would be good.

Originally published in Kindling: Writings on the Body (Palabrera Press, 2013). Copyright © 2013 by Aurora Levins Morales.


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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