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The poems here, and I'll admit, a few short prose pieces thrown in, collected from my previously published and unpublished work, chronicle the horror, despair, the utter confusion of how my own mind could turn so vehemently against me.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."
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.
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
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
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
vivid night terrors,
hatted with fingerless gloves,
wander into my bar
at closing time
with a menacing growl
and even worse--a smile.
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
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,
to what little i have:
here it comes…
here comes the dark.
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
she’d thought she’d lost it
in her restlessness
but it had been there
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
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—
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.
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.
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.
"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)
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
The small things that make up for the larger
thing I face every day
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” 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
ventricle to do
"InnerInferno," © JACW, acrylic on canvas (2014)
"Mayday," © JACW , acrylic on canvas (2016)