“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

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.
The absolute long-term horror is so vivid
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?
“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.
Dearest Jade. I really appreciate you and your kind words. Thank you so very much lovely human ❤️
((hugs))