How Did We Get Here?
A Message from Author J.A. Carter-Winward
"Why the red V?"
Because the red "V" stands for "silence," or rather, "SILENCED."
The trial exhibit from a single wrongful death lawsuit gave rise to a movement. But we're moving too much, still, and not enough in the right direction.
Akathisia, whether drug-induced or tardive, robs you of your life.
It turns a panoramic window of possibility into a peep hole through which the world, and all the potential you have to interact with it, shrinks until you are enveloped in black.
Mary Oliver wrote: “…are you breathing just a little, and calling it a life?” For people with akathisia, the answer is always “yes.”
It doesn’t' matter how you got here, you're here. It's time to take responsibility for your recovery from whatever brought you here—or who.
Many people have long, sad histories of abuses of power in the medical or mental health fields. Others went in of their own accord, and the medical provider simply did their job and gave you what you asked for—a pill to stop the emotional pain.
But now you've got akathisia. Now what?
Now you begin the process of recovering, whatever that looks like for you.
The purpose of this site is simple and there's no trick, only truth: Akathisia is a drug-induced side-effect, a withdrawal side-effect, and for me, ultimately, a chronic, daily battle, one that keeps closing the world and ravaging my body and mind.
Acute, severe, and tardive (late-appearing) as well as chronic akathisia is not uncommon. It's so common in fact, people who report the symptoms (the side-effects of medications) in the language that we've been given--"panic, terror, anxiety, can't hold still..." and so uninformed healthcare professionals prescribe other drugs to treat the "new, emergent GAD, generalized anxiety disorder, panic disorder, and if you buy into it, hook, line, and sinker, whatever you initially went in to have treated will be the least of your worries.
When they tell you that you have "treatment resistant" depression, then where is the hope? Are you really willing to carry a disorder, a disease, with you and your medical chart forever? Most insidious is now "we" have that validation that, back in the day, people so yearned to have: a medical designation that tells the world just how serious this thing is. It's not just PMS, no. It's not just that I am always tired, I'm not working out, or I am unmotivated. No.
Now, I've got a mental illness.
But that's only half-true. The now-disproved, logically suspect "chemical imbalance" disease model has been debunked by medical science. Yet we feel as though if the medical community doesn't recognize our pain as "real," we will once again be marginalized and ignored, and our pain, invalidated.
Make no mistake, all of that happens, and more, with the label.
What is true? If you take these medications longer than 90 days, you will have a chemical imbalance, or rather, permanent brain damage at worst, or a chemically-induced brain injury at best. Interestingly, both present exactly like the mental illnesses we're seeing in record numbers today. And as they keep creating new labels, we keep providing them brand-new test subjects with even more "mental illnesses" that are most certainly informed by drug side effects.
This website is not a magic bullet, nor is it a city of gold, nor do I claim it to be “the answer.” This site is my contribution to akathisia awareness, so that “akathisia” is a household word.
With 1 in 5 Americans on psychiatric medications, it should be as well-known as cancer or diabetes. It shows up differently for everyone. This site is about information, but you are the only one who can do the work to understand akathisia, and how you want it to inform your world.
I can't "fix" you. This website cannot fix you. It can only open doors. It’s your job to walk through. And yeah, the first thing you’ll see when you step over the threshold? A huge, steep stairway. But… “are you breathing just a little and calling it a life?”
Then take the first step. Then the next. It’s not just about you. This is about saving lives in the most literal sense you can imagine.
Don't tell your sob story, tell your battle tale, spin your war yarn, or yes, even your victory story, because when you suffer from akathisia, every day you get up and face it head-on is a form of battle and surviving is a victory. Find ways to support others - and be informed. Support looks different for everyone. Be careful "support" doesn't become an echo-chamber of victims. If you let it continue to victimize you, it wins.
This is how I choose to live my life, and it beats the hell out of feeling beaten, every day. But there are those days, too. I know, you know. So while it’s not going to be easy -- it will be worth it, but only if you make it worth it.
"This is your life
and its history and present belong only
to you." - Charles Bukowski
In the words of one of my favorite writers, the late David Foster Wallace:
"I wish you way more than luck" -
J.A. Carter-Winward
Award-winning poet, author, playwright, filmmaker, artist and performer
Read her Akathisia Page Here
Read her Akathisia Article Here
Watch the video "How Bad Can Good Be" and read the full description here.
COMING in 2021
in-her-rest-less-ness : poems & prose
Spanning almost 25 years, author J.A. Carter-Winward has written about her experience living with drug-induced, then tardive, chronic akathisia. The book is the first of its kind--written before she knew her suffering had a name.
Written for, not just for those who suffer, but for family, caregivers, medical and mental health professionals, in-her-rest-less-ness gives voice and shape and color to those who have it, who treat or diagnose it, or those who have suffered a loss to it via akathisia-induced suicide. The hope? By painting a whole picture without pale, clinical language or obfuscated, white-washed terms, we will know it, learn how to treat it, and eventually prevent and eradicate it.
From the author:
"This book is meant to provide words for the wordless, validation for the abandoned, strength to the hopeless, comfort to the despairing.
"...to those in the medical field or mental health field I say this: your job is to listen and learn. We are your teachers, now, so whatever you learned in school is now obsolete--however, many of you were not given all the information. Trust me: reading this book is better than first-hand experience.
"Understand: There are zero excuses, now. Any 'wiggle room' or 'margin for human error' was demolished the second I learned the name of the condition from which I, and too many others, suffer.
"Conversely, as mental or medical healthcare workers, you knew the name and possibly misunderstood how it presents. If you are guilty of dismissing, discounting, or maligning those who suffer, understand: we're not powerless anymore. So on that note, let's hope this book is the closest you get to understanding the scope of suffering akathisia causes."
Akathisia Alliance for Advocacy and Research
This 501(c)(3) nonprofit is committed to raising money for research and projects to promote awareness, educate medical professionals, and advance research.
Although in the beginning stages, expect great things from these folks. Those who head it suffer from akathisia or are recovering, so just getting up every day is an act of heroism and strength.
Sign up for their emails. Watch their YouTube films.
A fantastic resource on the fields of psychiatry, psychology and science, founded by award-winning journalist, Robert Whitaker.
No one knows a prescription drug’s side effects like the person taking it.
Make your voice heard.
RxISK is a free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers.
Akathisia Info
This WordPress blog offers an excellent introduction to akathisia and has valuable information.
Founded in 1986, the Multidisciplinary Association for Psychedelic Studies (MAPS) is a 501(c)(3) non-profit research and educational organization that develops medical, legal, and cultural contexts for people to benefit from the careful uses of psychedelics and marijuana.
