“You don’t look yourself”

I was told, emerging from the dark house

where illnesses photosensitivity kept

me attached to blue and black shadows

where silent peace reigned fitfully in denial, though I knew

I must fling myself once more into the bright world

mix with the living, as butterflies risk precious winged dust

we stood, awkwardly, almost strangers again, in yellowed grass

moving tables to create a uniquely American spectacle: The Yard Sale

neighbors shedding hoarded junk like layers, molting

old musty clothes, turning from winter’s sallow to summer mahogany

how to describe why I stayed indoors more than a year?

Only leaving for the hospital and one mistaken trip to a grocery store

where I couldn’t go further than the gloating fizzy water isle

such was the roiling in my stomach, where baby food

too rich to swallow, gagging a constant companion, I remember hating food

with a similar passion I once put into kissing lovers, though the only

kiss I gave now, the operatic porcelain of a toilet

how to describe this permanant change wrought in me?

The dread of illness returning, lurching across every day

with each silky knot of nausea, a terror, impossible to translate

until you have been brought to your knees 7 times a day

to throw up bile, acid and horror without ceasement

until you lose your friends, job, family, security, solvency

finally sanity, hearing it break away from your being

until you beg them to make it stop and they cannot

for the first time ever you think of jumping

and on that day you stood at the top of a bridge

unable to drive yourself, you staggered like a drunk

wanting just to slip from consciousness to a cold end

realizing the fragility of existing depends

upon whether that existence is tainted with perpetual pain

demons, doctors, even loved-ones, shaking their heads saying

“maybe you should try valium, Zanex, it could be you’re

having a breakdown or perhaps it’s a nervous condition?”

Something you never ever had; the betrayal of their assumptions

until fallible tests show it was a virus, proof you didn’t need

but they needed, to stop blaming you, something you did, your mind

a virus not a whim, caused your brain to misfire

telling your stomach to projectile vomit hourly

anything and everything and crunch into

splicing ligature, as indescribable as pain is

until you decide drowning is far preferable

to attempting to live when there is no life, in this kind of

suffering, your eyes open to a new brand of cruelty

of living, in a way you never knew before existed

the terrible bed-sore of loneliness, haunting days like

miniature torments, and they say; “just be strong!”

After a while, it sounds like a sad refrain you can’t even translate

falling away into perpetual morass, where the abyss pins your fading form

a dying Rhopalocera, once psyche, now nailed, glutted

unmoving, watching the spectacle of yourself, how do you rinse

that kind of terror from your soul? How? How?

They said, “you don’t look yourself” – but who were you? When?

Aged over night, cheeks hollow, 10 years older in 1, clothes hanging

like laments from aching bones; “can I offer you some food? Do you

have a disease? An ailment? Your skin is so pale it’s translucent”

I look back at the house, a shaded haven, become living coffin

a cage, filled with butterflies, moths, fire flies, memories

of nearly dying, nearly living, achieving neither

and the trees blown by springs early winds, bursting

with flushing color, kids running shrieking through sprinklers

snatching from Yard Sale tables and playing with their old toys

delighted with freedom, mud sticking to their legs like leaches

my neighbors making tacos, smoke rising in gorged wreaths

sitting in floppy hats selling odd nicknacks to passing cars of strangers

who joke and tell their dogs to behave and not pee on the lawn

I came closer because I know

to stay back, I would never change

the hour on the clock that struck and stuck

the day I was first pronounced, altered irrevocable

by suddenness, the only cure being

an urging back to light

even as it burned, even as it felt

strange and uncomfortable, unraveling a cocoon

of destruction, loss and fear

like pieces of myself gone for good

I walked toward them, seeking again

the comfort of the living.

(I was struck today by an article on Medical Gaslighting, that inspired this poem and my work in Indie Blu(e)’s anthology on invisible illness: But You Don’t Look Sick. GET HERE. If you have time, read the article. This woman’s story hit home, because like her, I was a healthy person suddenly stricken in 2017 with an unidentified illness causing me to be violently ill for years – lose tons of weight, my job, rack up $$$’s in medical debt and end up in the ER nearly every weekend with uncontrollable, unceasing vomiting & pain etc. Fortunately for me it wasn’t as serious as stage 4 cancer, but like this woman I was fobbed off. The only thing that made the drs take me seriously was my ‘professional status’ but how wrong is that? As it was, a colleague who is a psychiatric nurse told me it was probably ‘a break down’ that I didn’t see coming. I was told this repeatedly, despite having purely physical symptoms. As this woman says, a man would likely not be told this. It is time we call out medical gaslighting, this woman’s illness could have been identified earlier if she’d been taken seriously. As it was, it took well over a year for my diagnosis of Gastroparesis via a virus. It changed my life irrevocably & I don’t have her struggle so I can only imagine what it has been like for her. We don’t need sympathy, we must stop this gross dismissal of serious symptoms. https://www.yahoo.com/news/doctors-dismissed-teachers-worrisome-vomiting-155832704.html

6 Replies to “The comfort of the living”

  1. I can help remembering medical and psychiatric professionals, competent, compassionate, well intentioned ones, referring to Fibromyalgia as “the Borderline (as in BPD) Disease” with reference to doctor shopping and drug seeking. Of course, the patients so described were all women. And when I look back, I see that not only did they get dismissed or mistreated medically, but their treatment for any actual mental illness they may have had suffered as well. I’m sure that for some it is still happening.

  2. Hitting the “like” button is a curious concept. I don’t like that you were sick. I don’t like what you had to endure.

    But I like you and LOVE your writing.

    Why isn’t there a button for love or honest sympathy?

  3. “realizing the fragility of existing depends

    upon whether that existence is tainted with perpetual pain” – my dear, that part really hit home.

    As always it is a pleasure to read your work. You capture the essence of emotion, thought and humanity so easily it seems.

  4. Dearest Jade. I really appreciate you and your kind words. Thank you so very much lovely human ❤️

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