Akathisia: in-her-rest-less-ness: prose and poems J.A. Carter-Winward

in-her-rest-less-ness: poems & prose

Why write a book about suffering? Why read one?

Because this collection is the first of its kind: a culmination of over a decade of my experiences, my continuing battle to stay alive, fight, and ultimately, save others from my fate. I shake, I contort, I cry in agony, I’m exultant in brief moments of respite, and I write. I write, I write, and I will not stop.

Since no single word, or even phrase, could possibly capture the experience of akathisia, because it presents differently for everyone, the poems in this collection attempt only to define the many ways it presents, and personal experiences with living in its throes.

In a way, when we define something, we can then conceive of it. We can cope. Defining and giving it a name validates. So many people sought help from their doctors, only to be told it was “in their heads,” and "here, take another pill," including me.

I want this book to help people who were like me, a decade ago, when I was bent over, panting to breathe through the pain, and asking, “Why? Why?” begging, God, angels, the devil--ANYTHING, ANYONE, to help me.

The poems in this collection have as many facets and faces as akathisia itself. From lyrical, to free-verse, to in-your-face brutality, they capture, to a degree, the varied experiences of this condition.

I compiled this collection for those who suffer with akathisia, and for those who love sufferers. Because for them, at last, they will have validation--vindication. My words will facilitate understanding, and give a voice to their pain so loved ones and others can finally grasp the magnitude of their pain. For those who love someone with inner akathisia—finally, a chance for understanding and compassion. This book is my way of saying: friends, brothers, sisters—you are not alone. WE are not alone.

The poems here, and I'll admit, a few short prose pieces thrown in, collected from my previously published and unpublished work, chronicle the horror, despair, the utter confusion of how my own mind could turn so vehemently against me. And then, once I learned my suffering had a name, the ways I processed the feelings of betrayal, anger, bitterness, and confusion, as I claw my way forward, inch by inch, day by day. But also, in my words, there is hope.

Writing these poems is why, I believe, I survived and continue to survive. That, and continued therapy, religiously going to learn about myself, and coping mechanisms to deal with this unholy emotional pain. I live a lifeof wellness. I read, I create and I am physically active, despite my new limitations. All of these reasons, are why I survived, and continue to survive.

Within these poems reside words that I hope will comfort the comfortless, embolden the defeated, and give rise to understanding and clarity about horrible wrongs, dressed in the wool coat of "healing," but howling with the basest motive of all: greed.

Creating this collection has given me purpose, the desire to make a difference, the strength to fight back, overcome, and eventually, find hope and peace. And make no mistake, there are plenty of poems that snap and bite: humor, dark, razor sharp, anger-tinged, and ferocious, a cathartic banshee-cry against injustice. My greatest hope for this collection is that it will give others the same strength and will to make a difference in their own lives, and in the lives of others.

That, or at the very least, give them a modicum of peace within the carnage.

In the face of suffering, there can be beauty, redemption, courage, and purpose found—and made. It is the most intimate portrait of our humanity, our suffering; that, and our ability to face the challenges given us with grace or, if needed, a dangerous growl, and the baring of our teeth.

I have so many feelings--but one feeling that I always invite, nurture, and harbor, even within my darkest moments, is gratitude. I have so much, and so many people, for which and whom I am grateful. I am so very fortunate compared to so many.

There are those who have suffered, and suffer, more deeply, more horrifically, than I can imagine, because someone they loved was claimed by this condition. I cannot conceive of it, and my heart breaks with the thought. My compassion for those impacted this way is as ferocious as my compassion for those suffering with the condition itself.

One person I would like to acknowledge in particular is someone who also turned her suffering into purpose, finding the courage and will within herself to help others in the face of unbearable loss. Her name is Wendy Dolin, and she founded the organization, MISSD, after her husband's life was destroyed by six pills--six pills that induced akathisia--causing him to take his own life. Read about her story here.

The pioneering work of MISSD, has helped thousands become aware of this condition. While MISSD's focus is on antidepressants, the nightmare of akathisia is, unfortunately, much more widespread than that. Watch their YouTube video here, although you will find more comprehensive and accurate information on akathisia HERE.

This collection, in her rest-less-ness, is my contribution to akathisia awareness. I am pledging 100% of the proceeds of the sale of this book to organizations (TBD) to help raise awareness. Mad in America does amazing work, as well as RxISK.org. They are my first choices as to where to donate to donate the sale proceeds of this book. For anyone who wants or needs this book: I don't want to make a dime from it.

I want to invite you to buy it this book so that you are a part of what we--MISSD, Mad in America, RxISK, and I-- are determined to accomplish. In purchasing this book, know that you are a part of something: saving lives. Creating awareness. You will be helping me help THEM and me, help EVERYONE WE CAN HELP, and SAVE EVERYONE WE CAN SAVE.

Even through the darkest night, when standing together, we create our own light.

"These woods are lovely, dark and deep,

But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep."

~Robert Frost

DISCLAIMER

I am writing of my subjective experience. In no way is this to be taken as medical advice or a reason to abruptly stopping medications. This could lead to serious medical condition,s complications, or even death. Please, learn all you can, and see your doctor before stopping any medications, even if you feel you have akathisia.

However, if your doctor doesn't know anything about akathisia, or claims it isn't what you're experiencing, I encourage you to trust yourself, and trust what you've researched, read, and experienced. Follow your instincts: find a new doctor who knows his or her ass from his/her elbow, and report them to whomever you can so they are called to reckon for their gross medical arrogance and misinformation. They took an oath; hold them to it.

Conveying Pain:

Why is it an art form?

Because we've been given

NO OTHER CHOICE

"Self-Portrait: Here Comes the Dark"

acrylic on canvas (2013)

***

One of my many passions is visual art. Photography, but also painting. As I perused my photos of the artwork I've created over the years, I simply couldn't ignore the themes.

I painted the above in 2013. The face on the right is obvious. Usually when we take photographs, paint paintings, we have them reflect what we want people to see. In my case, I wanted people to see what they could NOT see--the inside of me. I didn't know yet what that would look like.

I didn't "paint" the face on purpose; it emerged as I painted the picture. Once I saw it, I used glazes to bring the face out more, to the fore.

Yet, I knew I was painting a self portrait: before-hand, I'd taken a gel-imprint of my own face, a photograph of myself transferred to gel, and I'd affixed it onto the bottom left quadrant of the painting, planning on glazing light shades over it.

You can almost see the outline of the square photo in the blackness of that area. I'd planned on having the photograph be the focal point, but as the face emerged on the right, as the pain(t) dripped over my gel-imprinted face, I knew..."The Pain" was speaking.

It wanted to be seen.

So there I am, without my facade. Look at me. See the horror in my eyes.

You almost get lost in it.

"The Face of Akathisia"

charcoal, photography, mixed media

--JACW

I Saw It. But It Saw Me First.

I like my doctor because he's got a quirky sense of humor, like me. So I sent him this.

I told him this was what tore at me. This "thing" was what I imagine as it torments me daily.

No masticating teeth, only jagged, bloody tearing-to-shreds teeth. The eyelids, torn off, because It doesn't sleep. No lips, because "lips" are a "softness," and it has none. My doc wrote, "Well, THAT was pleasant!"

I replied, "Right? Thinking of doing some wallet-sizes for the ol' 'fam' for Xmas, writing on the back, "I'm so lonely. Please come see me/us."

His reply: "Hahahahaha!"

Yeah, it's funny. Until it isn't.

All of the artwork below was done long before my diagnosis except the one above. I didn't know the name. Only "The Pain," and how it poured out of my hands, into the colors, and onto the wood or canvas.

Then, I learned Its name. Pray It never learns yours.

in-her-rest-less-ness: poems & prose

here comes the dark

--a whispering to my love, as he sleeps, blissful in

the safety of ignorance

here comes the dark

greeting me now like

a bitter old friend

smiling a thin line of greeting

and remembering old hurts,

clapping me on the back

in my return from sunlit peaks

and glimmering eyes.

you sleep so peacefully next to me

and i want your arms to comfort me

but you dream today away

and hold off tomorrow

with a furrowed brow.

i have images of thunder gods

racing me into a blanket of blackness--

my body is tired

my mind is wired

between them they've conspired

to render me into a tiny mite

of a human being

unable to wrest me from the suffocating grips

of unanswerable fear—

the cracked sidewalk of my mind

trips up the happiest thoughts

and i am too tired to resist the squalor

of my broken, dead dreams.

i want to wake you

conjure some phantom haunting

in the night

saying,

there, just there, do you see him?

i want you to see him too,

and use your powerful weapons

to fight for my honor—

keep this incubus from

crawling under my nightgown,

raping my mind

until my blood bleeds black

in my coin-less eyes.

did you hear that?

i want to ask

for the scraping of its claws

leaves gashes inside

and i've not enough arms to

cover what ekes out onto

the sheets.

vivid night terrors,

hatted with fingerless gloves,

wander into my bar

at closing time

with a menacing growl

and even worse--a smile.

we struggle,

my mind and i,

and there is no clear victor

because when sleep claims me

it's a free rein—

fear wanders the alleys of my mind

like those slithering ink blots

darting between garbage cans

at twilight

sifting through refuse

to find entrails

left by the butcher's block

the day before.

your arm is around me

hand cupping my breast

and i imagine it's the only thing

holding my heart in place

while the savages beat their unholy drums

and call for my blood.

you sleep so peacefully next to me--

while i say to myself,

holding on

to what little i have:

here it comes…

here comes the dark.

~jacw© in-her-rest-less-ness

aria

she found her voice

but it was only for a moment
before the dark gained on her;

she reached through the      darkness,
   opened her mouth
   and out it came
   her song—

she’d thought she’d lost it
in her restlessness
but it had been there
all along.

-j.a.c.©
2/15/06

i wish i could bleed

dark purple and black,

a slow spread under my skin:

that's what i need you to see.

that darkened blood underneath my smile--

the dissonance of madness.

i need handrails and wheelchairs and a ramp

to make conversation,

a spinal epidural in my temporal lobe

to numb me

from my tears down,

and i need it all with my handicap license plate

so i can park closer

to the edges of humanity.

then you would see me,

that dark, festering wound in my head

that's all in my head;

the only cruelty is

it's chronic not fatal—

so the hospice room is empty

and no one is there to mourn.

the hypodermic pricks of

incomprehension

lie at the foot of my narrow bed--

there is no morphine

for the rotting mind.

i wish i could bleed,

so that a flurry of healers would surround me—

stat,

paddles on my chest would jolt me to my happy place

with the same urgency

as a wavering heart.

i would drag my bleeding body up concrete steps

to a glass and steel framed building

with a crimson trail behind me,

and no one would tell me

to think positive,

snap out of it,

or pull up my bootstraps.

they would cradle me in soft things,

tell me help is on the way,

strap me down for safety,

and take me in

to where suffering

has a name.

~jacw© in-her-rest-less-ness

morning breaks

it sucks when you open your eyes

and the second sensation you have

you want to die.

the first one—

you've got to pee.

~jacw© in-her-rest-less-ness

maybe later, dennis

my doctor/therapist told me i should write about it. yeah, yeah. i guess i write about everything else. but here’s the thing: it’s not that there’s too much to write about. it’s not that there’s not enough. i think it’s that i’m so entrenched, so in the middle, and the blows keep landing in so many places that i can’t get ahead of them enough to form any sort of perspective.

so i guess for now, i need to wait. it’s a chronicle for a time when i can look back and say, whew, glad that’s done. for now, i look at what has happened, and more important, what’s going to happen, and the wintry cold that arrests my insides freezes me—i have never been adept at writing from terror.

if i try to write from a place of terror, all that comes out is a whimper. like a child—wordless and shivering after a dream, desperately praying for sunlight to warm her darkened room.

~jacw© in-her-rest-less-ness

"Unquiet Mind," © JACW, oil on wood panel (2013)

"She's Come Undone," © JACW , oil on canvas (2007)

"Isolated," © JACW, acrylic on canvas (2014)

"On-Coming Storm," © JACW, acrylic on canvas (2014)

"Encroachment of Darkness" © JACW , acrylic on canvas (2013)

Small Things

I am grateful for the small things:

an empty elevator,

a quiet waiting room; hand sanitizer.

A seat on the plane by

a person who doesn't reek of stale

smoke or cheap perfume.

When the bath water finally

covers my chilled legs;

when my coffee is hot but still drinkable.

An unexpected email from a friend

asking after me, asking about the

Mother Pain of all Pains.

I am grateful for color.

The purity of a somber concerto.

I can still hear the sound of my mother and father's

voices in my head—I am oh, so grateful for that.

The way my husband's chest smells at night—

the way his eyes still make me feel desireable.

Gratitude—for the all-encompassing love I feel

for the words I have inside me today,

words I recite to friendly ears,

and open hearts. Words I humbly proffer

to the other children of the Mother,

the Mother of all Pains.

The small things, the comfort of rigid routines

my lucky life affords me, despite the sinking, familiar

ache inside, telling me she’s stirring, soon to wake.

The cat sleeping on my head,

the smell of his fur, the scratchy kiss

or playful nibble on my nose.

My daughter called and she is content

for this moment, and my heart is calmed.

My son, thrilled by a thing only a boy-child

could celebrate, and as his mother

pretending to understand, hiding the dark,

within my eyes, by mirroring the elation in his own.

Ex-husbands who move forward, or far away;

False friends who stop pretending and vanish.

Current friends who are

just that.

The small things that make up for the larger

thing I face every day

arms up,

readying for the blows,

arms too small, too ineffectual for the

Mother of all Pain’s exacting scourge.

Saved then, by the tiny fortunes

of the mundane in my small, tentative life.

I choose to honor them now, these small

moments of peace, while Mother

permits me a voice;

while Mother still allows

the breath I take in

to feel as though I am truly alive,

when I know that soon,

too soon, my inhalations

will feel like the Old Testament God,

damning me without mercy,

his finger leveled straight

into my heart.

Takotsubo Cardiomyopathy

“Takotsubo” is the Japanese

word for a kind of octopus trap.

Japanese fishermen set traps to

catch octopi, and the traps look like

the left ventricle of the human heart

when it has been broken.

The company that made the drug that

traps me in my broken heart,

that breaks my heart as I’m trapped in

these tentacles, ventricles of pain,

is in Japan. I know that they know

their drug has broken my heart—

continues the breaking during the day—

the 12 to 20 breaths per minute—feeling

like I’m inhaling hot ash. They know my

octopus-trap ventricle is going to kill me—

but they ate my money

like they slurp their succulent tako—octopus

in its piquant sauce—the heart of the tako

stopped, long before it slid onto their

bamboo-matted plates. But my heart,

it takes its beatings from their little pill

like a good little heart should. Bowing and

bowing under the strain of the pain

of breathing air,

just like the tako they

suffocated for their dinners.

In goes the air—ah! Such searing pain. I writhe

as the tako must in their takotsubo traps.

I wonder if the drug-maker trapped words

to protect themselves from taking a beating

in the heart of their bank accounts,

so my family won’t drag them before a jury of

peerless souls, peering into the reasons

my heart finally missed a beat, then three,

then ceased to be—and beat—at all.

If my broken ventricle suddenly

bows, I wonder if their clever fishermen will

properly bait and court reasonable doubt,

make my peers

peer into why I had to take that

little white pill in the first place.

Or perhaps they are counting on me,

beating my own heart

to the punch.

Maybe they’re counting on the day

when I can’t take another breath

without the carnage their little pill left inside me

slurping up my will to live, while it was still alive.

Then, tired of the entrapped struggle and

waterless air, they’re hoping a handful of pills

made in the good ol’ U. S. of A.

will finish the job

their little white pill

couldn’t quite get

my broken

ventricle to do

all

itself.

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