This is why

The vitamins & essential minerals
outnumber the other pills, now.
But the other pills both control &

threaten the horror, the inner-rest-
less-ness, still — ticking time bombs. A
constant & menacing promise to take over

everything, eating away at the soft, fleshy
bits inside. The taper: Cutting, scoring,
forgetting, forging ahead, stoic, a mess, back-

sliding, meltdowns, getting up again — 
all confined within my lost what-could-
have-been-a-normal-life story had they

not cajoled, seduced, & bullied me
into that simper — that docile state
of yes, I am this. I must be this. In the

palm of my hand, the healthier
supplements overshadow — in size alone — 
one evil brain-chain drug, one of the last

to go — that will go, make no mistake. So
small & innocuous looking, it slid out of my
palm, in between my weary, trembling,

needing-rest fingers — it slid & fell
& then & then
& then & then & then

after 8 wrenching hours of non-sleep,
when demons inside had violated
every inch of me — enough

sheets burning my skin as it tried to
crawl off my muscles and
bones — enough

body juddering in the dark scream,
hot pokers resting
in between — ENOUGH.

This morning we found it — the
small, pink offender, on the bathroom
rug, innocuous — as I’d said — missed,

untaken, & the sweat cooled on
my skin, but I didn’t shiver. The
inner tremors shook with a new

purpose — I am not getting well
because of this. I am getting well
in spite of this —

& then & then & then & then
& then & then & then
& then

one day, when its evil, invisible talons
fully disentangle from my brain’s
gyri & sulcus, I’ll hiss the

truth into its placid, scored &
etched surface — No. I am
not this. I was never this.

You are this.
You are
the sickness.

You are this SICK.

©j.a. carter-winward

“This is why”: a Poem of Withdrawal was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

If you own cats, you might be familiar with this look on their faces.

Of course, it’s easy to anthropomorphize animals and infer all kinds of human emotions in their expressions, but I think Hemingway’s face says it all, clearly and irrefutably:

Really?

To be fair, it was a rather esoteric question, asking him if he had any aspirations to be a “comfort animal,” the new therapeutic excuse to get out of ‘pet discrimination,’ despite the valid and legitimate resources animals are to humans regarding our mental and physical health.

Here’s the thing.

Human beings are notoriously gifted at believing we’re at the center of the universe, that our needs are more important than other creatures’ needs, and in fact, some of us ickily believe our needs supersede the needs of other human beings.

Even more distressing, we’ve become more and more tribal, selfish, and entitled than ever before, and the truth of that can be traced back to our overall health (as a species) and our declining lifespan.

What does this have to do with drug-induced, acute, or tardive akathisia?

We share one thing in common with animals, plants, and other lifeforms on the earth.

We are all wired to survive, and akathisia poses a unique and unprecedented threat to human survival.

Rescue Animals

When you read the above term, what comes to your mind?

Dogs, digging for avalanche survivors in the snow?

Pets who can predict seizures in their humans, or even sense the early growth of cancerous cells?

Animals locked up in cold, steel cages who are waiting to be adopted into a good home?

Well, I’m actually talking about a very social creature that we’d likely see as pests more than pets. I’m referring to the Matabele ant.

These ants raid nests of termites — a dangerous business indeed. But what’s remarkable about them is that they don’t leave wounded ants behind. Wounded ants release a pheromone that acts as an SOS signal, and they are retrieved and bought back to the nest.

Even more shocking, the uninjured ants actually participate in healing their wounded comrades by holding broken limbs in place while licking wounds for several minutes at a time.

How does that benefit human beings?

Funny that we even ask that question. See above, but also, why would we ask that question?

Ah, that’s right, to learn the secrets of these ants so we can find the cure for human diseases like ____, the secret to healing injuries such as ____ and ___.

But… we’re such an advanced species… surely we already know more than ants.

Right?

If we’re so advanced, though… why can’t we regenerate our organs or limbs when they get damaged?

Self-Medicating = Bad

We’ve had this hammered into our collective minds for decades. Of course, self-medicating human animals tend to medicate with things that are long-term detrimental to their health. Sometimes.

People who favor natural approaches to their health are often seen as anti-science and ignorant. The reasons for that are multifaceted but many people who have had medical science harm them find their distrust of the entire profession colors their perceptions of any possible good it can offer them.

What’s true is this: Medical science is a victim of its own success, and while we shine in emergency care, we have failed, miserably, in the practice of wellness and preventative medicine.

We sold-out our national soul to mass-produced, convenience foods — arguably the most important building block of health, our food — because we were sold the idea that time spent preparing, growing, or buying healthy food was time spent away from the important duties of family and parenthood.

Thank god for fast food! Please, let’s all take a moment and reflect on how takeout and frozen pizzas have brought us closer to our parents, our children…

Ahem.

We work to live, eat to reward ourselves, and live to make it through another day. And those are the luckiest of us. What happens when something goes wrong?

Well, if a chimpanzee has intestinal worms, it eats the pith of a plant called Vernonia amygdalina to kill the parasites. No RX necessary.

Mountain gorillas eat clay to absorb, then rid themselves of toxins and pathogens, and no, the clay isn’t ‘berry flavored’ or ‘mint.’

Observations of capuchin monkeys show that they rub their fur with millipedes containing insect-killing chemicals called benzoquinones

If any of you own cats, you know how important cat grass is to their health — or do you? Are you one of those who buys the ‘hairball’ formula cat food to avoid the messy, gag-inducing chore of cleaning up their hairballs and puke? If you are, I’d suggest doing research on the myriad of benefits cat grass has for your cat’s immune system, kidneys, and ability to rid itself of toxins. If you think the cat yak is gross, just wait until you get the vet bill for a cat in slow kidney failure.

What’s important to note in that last bit is this: we see the cat’s gagging and throwing up as a pathology, when in fact, it’s the optimal way for cats to allow their own physiological makeup to keep them healthy.

We also see cat yak as inconvenient. To us.

The phenomenon is called zoopharmacognosy, and broken down, zoo (“animal”) pharma (“drug/medicine”) cognosy (“knowing”) is fairly self-explanatory.

Why can’t humans self-medicate? We don’t know how, and maybe at one time we knew some things, but it’s all been lost to the “miracle” of modern medicine.

Instead of learning how and why these creatures instinctively know how to self-medicate, we turn to our doctors, who then medicate us after it’s way too late. There are no miracle cures for “too many Big Macs.”

Gut Instincts Aren’t Just Feelings

If I could go back in time to the doctor who prescribed me Zoloft, I’d ask him what effects it had, or has, on the human Enteric Nervous System. I have a feeling his face would have looked something like this:

Because I bet there isn’t a more awesome experience doctors have than when a patient asks informed, critically thought-out questions that they’re not only unprepared to answer but can’t possibly know the answer to.

Back then, I doubt many primary docs would have considered the brain that resides in our gut when prescribing, nor its vital role in our mental and physical health. Sadly, not many doctors consider the ENS when prescribing today.

We’re seeing more and more gluten-free products, dairy-free, because people are becoming sensitive to these proteins and foods. Or… have we always been, but the antacids are right in the bedside table drawer?

We can’t really know why, but it’s not a ‘health food craze,’ it’s a paradigm shift about our food, and it’s happening on a global scale in First-World parts of the world. Why here rather than in other areas?

Because other areas of the world don’t have the resources to eat takeout and convenience foods, perhaps. Other areas of the world know what medical science can fix, and what it can’t. Other parts of the world don’t have access to medical care in the same ways we do.

But somehow, before everything was medicalized, human beings knew, instinctively, how to heal, or prevent, certain ailments. No, I’m not waxing poetic or looking back on the halcyon days of polio and blood-letting.

I’m suggesting that throwing the baby out with the bathwater, specifically in American medical practice, was cutting off patients’ noses, not to spite their faces, but to make pharmaceutical peddlers a lot of money.

Akathisia and Survival

I wonder what the copays are for wounded Matabele ants?

We’re so invested in how the natural world, and its inhabitants, can “fix” us, how we can benefit from them, we lose sight of what our very existence and arrogance does to threaten the natural world. We don’t stop to ask what we can do for it. Didn’t we all see The Lion King? The circle of life applies to us, too.

We know for a fact that deep breathing sends signals to our brain to relax, and instead, we pop pills to do that for us. We know for a fact that meditation can help regenerate and grow gray matter in the human brain, but who has time for all that when we have a movie to catch?

I have come to believe that drug-induced akathisia has a pathogenesis, and that pathogenesis is damage to certain parts of the brain, damage that leads to malfunction, specifically in the brain’s ANS, sympathetic and parasympathetic nervous systems, along with the multilevel cascading functions of these vital systems via medications or other brain damage. If you doubt me, feel free to look up every, single side effect of medications that cause akathisia, and connect them to the parts of the brain.

Here’s an example. Dry eyes and mouth? How innocuous. Except for the fact that using medications long-term that cause dry eyes and mouth mean that drug is impacting the parasympathetic nervous system, the system responsible for digestion, tears, saliva, and oh, yes, REST. So…restless, anyone?

As for a pathophysiology of akathisia? How absurd.

What’s the pathophysiology of cancer? Sure, cancer cells, genetics, environmental and lifestyle factors, but knowing the pathophysiology doesn’t explain why some people die of cancer or develop cancer, not completely. It certainly hasn’t led to a cure or prevention.

What about the pathophysiology of COVID? Yes, a virus. But once contracted by a human being, it hardly behaves the same in people, even those who have breakthrough infections after being vaccinated. It’s not much more predictable in the unvaccinated, because too many factors weigh-in on why someone survives, why someone does not, and so on.

What’s the pathophysiology of depression? I think looking at the pathogenesis of depression is more accurate. While there are measurable changes in the brain when depressed, the answer doesn’t lie in a pill.

Becoming clinically depressed doesn’t happen overnight, kids. Further, there’s likely a ton of real-world reasons why someone becomes depressed, even if those factors happened a long time ago. Taking medications might give us a sense that we’re doing the right thing, but deep down inside, there’s a part of us that knows we’re cheating. I knew it, I felt it, and I quickly justified it before it could become a critical thought or question.

The thing is, the price we pay for buying time is usually higher than we’ll ever be able to repay — and buying time, in the end, is an illusion to its core.

So while akathisia “presents” with some undeniable markers both physically and psychologically, neurologically we can’t possibly know how it will present for everyone, only that the likelihood of someone developing akathisia is astronomically higher in those taking medications that cause it.

Popping a pill was convenient. Or, for some of you, like me, you weren’t given much of a choice.

But we have more choices now than ever before.

Don’t give up hope. Begin learning how the brain heals and repairs itself. Learn how your brain functions and what foods encourage a healthy, quality life.

I know your brain feels like an enemy when you’re suffering with akathisia, but we know that thoughts can affect our physical beings. That said, start seeing your brain as an injured friend rather than an enemy. Understand, its job is to protect you and maintain homeostasis. And if “homeostasis” is akathisia, then that’s information that can lead you toward a way out, not by compounding the damage using other drugs, because you can’t keep doing the tradeoffs without the bill coming due, unless there are medications that are temporary and do what your brain and body cannot help you do just yet, which is survive.

We know that neurons that fire together wire together. That means you have more power than you know in helping your brain heal from the effects of medications. Not by reading PubMed studies or learning about cell mitochondria. Sadly, not by spending a ton of time online, in groups that reinforce feelings of victimhood and blame. Blame can only fire one way, and self-blame is a myopic, unnecessary thought pattern. But focus on blaming the medical establishment will eat you alive.

You don’t need a medical degree to know what feels good and right and what doesn’t. So first, figure out what it is you’re living for, and who. And if that “who” is you, then that’s the perfect person to care about.

I care about myself, friends, so I need to be honest. This work demands things from me that are hindering my ability to heal. However, I’m not abandoning you — never. I will be a bit scarce, though, especially here as I continue my way toward healing the damage done to me by the long-term use of akathisia-causing medications. My focus must be recovery.

My hope is to continue the good work in creating awareness for black box warnings on medications, calling for the removal of television ads advertising medications (please, please sign the petition), and hopefully finishing up a song, two films, and the book, in-her-rest-less-ness, which chronicles over two decades of drug-induced, tardive, and chronic akathisia.

Through short poems and prose, my greatest hope for this book/work is to help victims find their voices and solidarity, a will to heal and thrive, to educate mental health professionals, and to inspire families to rally, not abandon their loved ones, after they’ve been harmed by medications. Are we really less evolved than ants?

(Really? asks Hemingway, my cat.)

The goal is simple. To survive, heal, then help others so a new generation of human being has the ability and instincts, the knowledge and wherewithal, to learn how to live in a more harmonious state within themselves and the world around them.

Peace out, keep the faith, and heal on —

JA

From in-her-rest-less-ness: poetry & prose

contrast

the dawn left its
imprint on me today — 
then the birds

took my insides
and fashioned their
songs to my heartbeat.

glorious!

alive! glorious!

alive!

yet, i am only
gloriously
alive today

because of yesterday’s
death throes — just as
the bird-songs are only

heavenly because of
their long,
wintry silence.

-2017

Survival of the Wildest was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

The world doesn’t care, so you must. People closest can’t see the pain, the raging nightmare that is #AKATHISIA inside you. Even if they could, they don’t want to. It’s too terrifying and the demands are too great.

In case you’re wondering, yes. I think about giving up, every, single day. Giving up what? Infer what you will. But. I love Life. I loved it before, and I found ways to love it throughout, up until now.

And the moment you tell yourselves you’re all alone in this, whether true or perception, it becomes the most self-fulfilling prophecy you’ll create — and the most destructive.

Today, wallowing in my alone-ness, worrying I’m sick with COVID* inflicted on me by someone close to me — despite vaccination, despite extreme precautions since I’m high-risk — someone who sees the pain, knows the nightmare. Doesn’t matter, not really.

In the end, some things are unstoppable, others are not. It’s your job to figure out which is which.

So much of this, I hate to say it, is about our ability to walk through the fire because everyone has fire. I found out today that one of my favorite actors, Selma Blair, is living with multiple sclerosis.

She’s doing a wrenchingly candid film about it, hoping to show people her particular “human experience.”

Living with AKATHISIA and other damage from prescribed medications is mine, yours, our human experience. Only being humane toward ourselves and each other will bring us closer to the edges of humanity.

That said, I tore myself out of bed and read the Times. I read about Lebanon. Much like my mother, telling me of starving children around the globe as a way to get me to appreciate my dinners, I urge all of those who have been harmed by prescribed harm, disabled, suffered terrible loss, to read and get to know what’s happening in Lebanon.

It changed my perspective and pulled me out of the darkness.

I wrote the following poem (below) on July 7th, 2007. It’s an extremely bleak poem, but writing it pulled me from another dark place. That’s what writing, and reading, does. It extracts you from the terrible solitude, the isolation of chronic pain, and affords you a different perspective, if you allow it, so you can trudge through another day.

Sometimes it helps to read about your own suffering through the words of a poet. I know there are those of you out there who hear my voice and resonate — that I sometimes write the words your own body screams. I want you to feel the truth of it — you’re not alone.

Charles Bukowski wrote that ‘poetry happens when nothing else can.’

That was a deliberate choice for him and for me. A lot of other things can happen. I chose poetry then, I chose compassion as I read about Lebanon. I choose life and gratitude today. These aren’t banal platitudes coming from someone looking in the rear-view mirror at sickness and pain. I’m in the car with it.

But I’m trying to tell you — the way out of suffering is to suffer with your fellow wanderers. Do all you can to be with them, heart, soul, mind. Thanks to technology, a change of your own worldview is just a click away. Use this.

And so, with all that in mind, here is the poem that saved a single day for me over 14 years ago.

Peace out —

ja

Perfect Storm

Something broke inside of me. One might think it
began with hairline fissures found cascading through
my ribs, sternum, and fingers, but no — a pressure had

built, just behind my left eye, leaving it to see only
monochrome and shadow. A grinding torture in my

sternum, as if God himself was using my solar plexus
to put out his cigar. It’s been, for over 2 decades, a
relentless deluge, a surging tide, pushing its way through

me, salt and sand, like brittle glass shards — they were the first
wave. Each day, as I went through the motions, they

chipped away — malevolent, unrelenting — at my resolve.
Soon, all that remained was a mass of confusion and ruin
with no pain-free breaths to speak of. Then the winds

took their turn and time with me, gusts thrashing my spine,
my neck, curling my toes and buckling my knees. This typhoon

wound ‘round my guts, lungs, and my throbbing heart,
choking them silent, extracting useless information through my
threadbare voice. The squall carried my vitals down-

stream to be scattered with other rubble and remains.
When, finally, the small fissures emerged, then grew into

cracks — splitting my mind and vision, scoring my resistance,
shattering my will into shards. Like anyone seeking
redemption for my unknown sins, I sought a savior to

salvage the wreckage, repair the damage, but it was done.
Though the tide had ebbed, and the wind had died, I am

derelict, abandoned. Stories of past-grandeur won’t be told
because there are none. I’m an off-the-beaten-path relic, a
place for ghost hunters and schoolchildren, wandering home

on amber-October afternoons. Diffused light beams housing
dancing particles run through me, but I’m an eyesore. Drafty,

hollowed and dry-framed, but under this husk, find the beginnings of
decay. My rafters hang and creak on unsteady joints as the
sea and wind call past me through tall grasses. I shudder, stubborn

in my spot, surrounded by nothing. The only passage left for me is
fire — it could start from outside or within, but either way my frame is

kindling. All that was human, all that remained flesh and softness was
eaten away so long ago that nothing remains of who I was, who
I could have been. One day — I pray the shamans will come and

sing over my bones — they’ll dance on me, burning sage purifying.
They’ll shake their rattles, singing hallowed night songs,

summoning the souls of the long dead — protective spirits,
dancing their circle around lost hope, frail and distant dreams,
forgotten loves and memory. I ask only that they tear me

down utterly so no revenant remains howling through the
boards. Ripped to shreds, slat by slat, bone by bone, then

slip me gently into the earth’s cradling embrace. I ask for
forgiveness from their gods — for the sea and wind,
for they know not what they do and I’m no more their

victim than so many left broken and ravaged in the
wake of a storm, perfect in its brutal destruction.

I was simply in its path. And so my greatest hope is that
those left behind will speak in soft voices as they pick
through these remains and remember, remember —

the way those before them remember — hold
vigil for these events we long to forget. Tales of

torment and defeat, inflicted by wind and
sea, by land, by time, and the endless
gods of indifferent suffering.

-July 7th, 2007

UPDATE

Yesterday, after I posted this, I went to get tested and it turns out, I tested NEGATIVE for COVID. Here’s the thing.

I had a fever, tender glands, sore throat, my chest felt heavy, throat tight, terrific fatigue, more so than usual, BUT. When that negative test beeped into my phone, guess what? Over the course of the evening and into this morning, my symptoms ebbed. And that, ladies and gents, has been something I’ve learned over the course of my life — the power our minds have to create our actual, physical realities. We can’t beat a virus with the mind — but we can absolutely capitulate to what we believe is expected of us if we think we’re sick. What does that say and what could that mean re: expectations, whether personal or societal, regarding mental illness?

Although I’m still terrifically fatigued, I’m ALWAYS terrifically fatigued. I have some sort of autoimmune d/o that just kicks my ass, every day, which is fun because “restlessness” would be a lot easier to handle if walking, pacing, moving, working out, jogging, were options.

Perfect Storm was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

Originally published at https://www.akathisia.life on September 4, 2021.

I’m currently reading J.G. Ballard’s novel, published in 1973, Crash, a scathing and disturbing social commentary on human progress, hubris, and self-destruction. In 1996, it became the eponymous film by David Cronenberg, one that explores those themes through the same motif as the book — symphorophilia — the act of obtaining sexual pleasure from staging or causing car crashes, oftentimes reenactments of real-life car wrecks involving famous people.

While Ballard’s work has never landed squarely on the nose of social criticism and didacticism, it still skirts the prescient and current fetish Americans seem to have with playing fast-and-loose with progress, but also, specifically, with illness.

For some people, being sick or in pain comes with a payoff.

For others, it costs them everything: their quality of life, their careers, community, friendships, and sometimes even families.

People pretending to be ill, in pain — or in rare cases, Munchausen Syndrome — for attention. Sometimes people feign pain as part of drug-seeking behavior for pain killers. Some people even make themselves sick, drinking or ingesting small amounts of poison to create a health crisis or chronic health conditions that required medical attention and care.

It happened so often they made it into a disorder of the mind. Hypochondriasis.

The above photo is from one of my favorite family movies starring Eddie Murphy — a remake of Dr. Doolittle, Murphy’s portrayal sandwiched in between two powerhouse actors, Rex Harrison and Robert Downey Jr.

Mrs. Parkus, above, played by actor Cherie Franklin, is allergic to shellfish in the film.

To avoid having to go to the hospital, she oftentimes does this:

Yes, I know.

Crab, softshell crab, all shellfish, Mrs. Parkus.

And so Mrs. Parkus has the hospital call Eddie Murphy’s character, Dr. John Doolittle, because only his “care” will do. According to the young doctor who pages him, “She’s scared. She wanted her doctor. It’s a beautiful thing.”

And as she leans over the exam table to receive her epinephrine (likely) injection, she sighs contentedly, with relief — but not as if she’s in a J.G. Ballard novel.

She sighs because something about receiving medical care makes her feel good, safe, cared about, and like she matters, not just to Dr. Doolittle, but in some sort of larger schema.

This brings me to another cinematic gem, What About Bob?

This one, a little closer to home for both patients and anyone in the “caring” profession.

Bob Wiley, played by Bill Murry, is a bag of neuroses. While he befriends everyone he meets, and while he’s a good worker, Bob needs constant reassurance from mental health professionals. After pushing personal boundaries and using unassuming, seemingly benign forms of manipulation, he eventually drives his therapists to madness.

One such therapist, while frenetically packing up his office, calls Dr. Leo Marvin, played by Richard Dreyfuss, and strokes his already-massive ego by telling him he’s referring a patient to him, someone only Dr. Marvin could possibly help since he’d recently become the center of national attention with a new book called Baby Steps.

Bob ingratiates himself with Dr. Marvin’s family while they’re on a summer vacation at their lake house, specifically relating to his children, a young teen, Anna — who has grown tired of her father’s clinically-infused communication style, and Siggy, Dr. Marvin’s wraith of a son, who is much too dark and cynical for his age (Anna, Sigmund, get it?)

One evening, as Siggy and Bob settle in for a ‘sleepover’ amidst promises to Dr. Marvin that Bob would leave, first thing in the morning, Siggy opens up to Bob.

Siggy: I mean, my Dad just dropped me in the water, without warning me first. I mean, I nearly drowned! My whole life flashed before my eyes!

Bob: Wow, you’re lucky you’re only twelve.

Siggy: It was still grim.

Siggy: Bob, are you afraid of death?

Bob: Yeah…

Siggy: Me too…there’s no way out of it. I’m going to die. You are going to die. We’re all going to die.

Bob handles Siggy’s existential crisis by telling him that when he’s afraid of something, he fakes something worse. Because ‘if you’re faking it, you don’t have it, right?’ Then, the two of them go on to “fake” Tourette’s Syndrome while jumping on the bed.

Like ya do.

The medical professionals in my family — hell, my own husband — hate the movie. My husband even has a “Bob” clause (the actual name of the clause) in his contract (he’s an attorney) that sets clear, personal, and professional boundaries about what is and is not acceptable behavior between himself (the professional working with them) and his clients.

When I first watched What About Bob? I hated it too because I worked in the lower echelons of the social work field.

I wanted to go further, maybe even go into psychology, so it was a relatable offense, having someone from work get too close, too attached.

Now, though, I love the movie. I love it in so many ways, it’s impossible to count.

I think the reason I love these films is because both of them yank medical/mental health professionals by their stiff collars, off their self-and-societally-appointed pedestals and into the worlds of their patients — into the world of helping people (and animals, I suppose), who are in real pain.

In What About Bob’s case, the film shows how thin the line is between ‘mentally sound’ and ‘mentally unsound’ based on our immediate surroundings and support systems (or lack.) It also shows us how truly caring about another person can heal another human being — something the egotistical Dr. Leo Marvin was incapable of, but his family was not.

Hey, if I had to choose between being in a relationship with Bob or Dr. Marvin, there would be no contest.

Anecdotal stories began flying through the medical community about how to deal with ‘attention-seeking’ patients probably around the time the DSM became more and more medicalized, but they didn’t need to fly far. There’s a long and sordid history of doctor-patient conflict and a lack of faith in one another.

And for good reason.

One example occurred in a small town in Connecticut, where two elderly women fought the medical establishment to have their disease acknowledged. The town in which they lived? Lyme.

From The New Yorker, writing about Porochista Khakpour’s book, Memoirs of Disease and Disbelief:

“You know,” a doctor informed one of them after failing to find the source of her symptoms, “sometimes people subconsciously want to be sick.” It’s tempting to think of this reflexive, paternalistic skepticism directed at female patients as a remnant of a bygone era. And yet there’s a class of illnesses — multi-symptomatic, chronic, hard to diagnose — that remain associated with suffering women and disbelieving experts. Lyme disease, symptoms of which can afflict patients years after the initial tick bite, appears to be one.”

— Lidija Haas, “Memoirs of Disease and Disbelief,” (May 28, 2018.)

As patients presented with more and more ways the human body could go wrong, the medical community began using the newly-sanctioned DSM-IV to diagnose, then refer patients, to therapy.

In other words, if indeed these people simply needed to feel good, safe, cared about, and like they mattered, well.

That was too tall of an order for their family practitioner or PCP.

But here’s the thing.

With rising medical costs, due, in part, to a veritable lack of preventative healthcare and the over-medicated population here in the U.S. (specifically), people are showing up at healthcare facilities with pain, ailments that can’t be explained by blood tests or other diagnostics.

Side-effects of medications weren’t on anyone’s radar back in the 20th century, and they’re not on the radar now.

Side effects, contraindications, interactions, adverse events.

In other words when medical treatment actually becomes harmful.

It happens with such frequency throughout the world, but specifically in the United States, it feels like a form of gaslighting when I tell a healthcare practitioner or mental health professional that I’ve been permanently disabled and traumatized by the medical community.

They don’t really…disbelieve me, but they say things like “Well, you must be very sensitive to medications, hmm?” Or “…whether *I* believe you or not doesn’t matter. It’s about you processing your experiences and your past traumas, then learning ways to move on…”

No, no. It fucking matters.

I’m not a convicted felon, you are not my defense attorney.

I’m someone moving into her 53rd year of life and I need preventative care, but also, I need to know that if something happens to me — some horrific neurological event that my husband is in no way trained to handle — that when I go to the hospital, I’ll receive quality medical attention and care — care.

That basic expectation of care shouldn’t be something I have to worry about as I’m having a stroke or while I’m in a Parkinson’s freeze.

But I don’t have “Parkinson’s.” I have “parkinsonism” — notice the small “p?” — and there’s no way to tell the difference between idiopathic Parkinson’s and parkinsonism.

Funny thing about Parkinson’s disease, they don’t treat you like you’re an attention-seeker, even though they don’t know why people with Parkinson’s go into freezes, even though there’s no way to predict them, only that the daily medications for Parkinson’s usually help, unless you have parkinsonism, or as it’s called on the Parkinson’s Foundation website at parkinson.org, “atypical Parkinson’s disease or Parkinson’s plus.” (Notice the big “P”? Thank you Parkinson’s Foundation peeps for treating us like human beings. Sometimes feeling validated is as simple as that.)

Unfortunately, when it comes to parkinsonism, there are no medications that can help, especially in my case, since medications caused it, along with other neurological movement disorders, including AKATHISIA — a condition that’s hotly debated on every level as to whether or not it’s an actual neurological movement disorder.

Let me help y’all out with that: IT DOESN’T MATTER WHEN WE NEED MEDICAL INTERVENTIONS, HELP, AND CARE.

The vast majority of people who have been victims of iatrogenic harm are not anything like Mrs. Parkus — eating at Joe’s Crab Shack then running to the ER for a gentle, if not Freudian ‘poke.’

We’re not like Bob Wiley, so lonely and in desperate need of human connection, we burrow our way into a healthcare professional’s life — at home OR in the clinic.

I have a life. A full-time career I love, a couple, actually, and a huge array of things I want to do that I can no longer DO. So I NEED actual medical care.

What I want and need are mental health professionals who can step into the terrifying possibility with me and US that one day, they or someone they love might come to medical harm so they can develop an understanding of what it’s like to feel totally un-cared for.

I now dread meeting with my new therapist. I avoid going to the doctor at all costs and hate how many healthcare providers I’m forced to see because of iatrogenic harm, because of medications that impacted my life in horrific and unimaginable ways. The medications given to me without any warning, negatively impacted my quality of life, its duration, and my ability to do the things I love to do.

I’m given, on a week-by-month-by-year basis, the same kinds of choices as the prisoner’s dilemma: choosing to do things that seem counter to my own health, like during withdrawal cycles, being forced to smoke cigarettes or suffer from acute/tardive AKATHISIA, migraines, vomiting, nausea, dystonic seizures, tremors, dyskinesia, and mind-numbing fatigue — and remember, there’s no rest for the restless.

And since you’re asking, Doctors who ask patients this stupid question, rhetorically and with “dick-finger quotes”: No, we didn’t go to medical school. But we can read. My husband can read and he’s read enough about what’s happening to me in the drug manufacturer’s literature, so he doesn’t need his MD, either.

My conditions are chronic, progressive, and I’m not going to get better. But how delightfully ironic of you to ask that while simultaneously placing the onus of your ignorance on us by reminding us that no one forced us to take medications, did they?

We aren’t “attention-seeking.” We have been hurt, violated, and thrown away by the ironically-named system of CARE and it’s unconscionable we know more about what’s happened — or is happening to us — than you do.

Is it that hard to log on to PubMed, read, and do your job?

Much like Ballard’s novel, the many anecdotal stories dismissed as “merely anecdotal” must serve as genuine, dire warnings of a cultural trend that has been so thoroughly ignored, even waving the latest studies and evidence under a prescriber’s nose doesn’t matter. Even more ironic is that many prescriber’s prescribing biases are led by their own experiences — yes, the oft dismissed anecdote.

“I’ve had a lot of success with Paxil with my other patients.”

Two months later:

“Dr. Arsehead, I’ve been online and there’s a ton of people who claim Paxil made them feel exactly like how I’m feeling — which is horrible.”

“Online stories? Those aren’t real.”

I think the most disturbing trend of all is how people in the caring professions have become so adept at ignoring and dismissing new information given to them by patients, as well as dismissing, detaching, and distancing themselves from their patients and clients.

It’s so commonplace, someone like Bob Wiley would be in prison by today’s standards. And Mrs. Parkus?

Hard to know.

Good thing for her, at least in a fictional world, she has a doctor like Dr. John Doolittle, who doesn’t ‘do little,’ but who does much for the people (and critters) who need him most.

Doctors Doo-Little was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

My husband dislikes the term “patient,” especially in the therapeutic sense. Someone may have a PhD in psychology, but we’re not their patients. We’re clients. More on that later.

The thing is, if you have been harmed or your life turned upside-down by medications, I can’t urge you strongly enough to find a good therapist. The problem I’ve run into since my former neuropsychologist, Dennis, is this:

Therapists see people through a psychological Phoropter. If you haven’t had the pleasure of being legally blind without corrective lenses, allow me to walk you through an eye exam.

You’re show to a room, a dark room and asked to sit in a chair that looks skeptically dental in nature. When the Doc arrives, he asks you questions and then he brings the monstrosity (above) toward your face. Rest your chin on the tissue paper. Smoosh your face right up close. Ready?

Now, the optometrist says, “Left eye first. What’s the smallest line you can read?”

You shakily read the mid-range row of letters and numbers, and then he starts to flip, slide, fiddle with the Phoropter and says, “Okay,” [one-beat pause], “better or worse?”

“Better.” Flip, slide, fiddle.

“Okay, 1 or 2?”

“Two.” Flip, slide, fiddle.

“Three or 4?”

“Three?”

Flip, slide, fiddle and on it goes.

This isn’t unlike how most mental health professionals operate, including medical mental health professionals (psychiatry.) But when seeing a therapist, what you hope for is someone who sees you as more than the sum of your diagnostic parts.

Therapists who are good at their jobs will see or learn what modality works best for you, and other therapists will try to stick to the modality most comfortable for them, pressing you like dough into a form. Even if key parts of who you are and what you need get smooshed over the sides and discarded.

Stubborn medical doctors are just as guilty of this behavior.

Before therapy, you usually fill out a long intake form, so they already have you halfway into a designated diagnosis. But then, just to make sure, they sit down opposite you and ask you why.

“So tell me why you sought out counseling.”

“I have been feeling a lot of pressure at work and in my marriage.” Flip, slide, fiddle.

“What do you do for work?”

“Well, I’m embarrassed to say, but I work at a strip club waiting tables.” Flip, slide, fiddle.

“Mmhm, and how long have you been married to your husband?”

“Almost 3 years, but I think he’s having an affair with my best friend — he owns the club.”

Flip, slide, fiddle and on it goes. The therapist is looking for patterns. They’re subjectively observing your demeanor, your affect, your ability to take responsibility, you’re inability to see your role in your own life, and they’re looking for a suitable box to place you in, a “mental illness” category that appeases both the insurance company and their own need to feel useful and competent. A guessing game at best, a waste of your (the client’s) time, at worst.

Unless, of course, the therapist is good at guessing games, good at listening, good at discerning what their client’s need, and good and forming genuine reciprocal bonds.

Recently, my (former) therapist told me he hadn’t seen a “genuine curiosity” in me re: past trauma and the role it plays in my life. I’ve never been accused of a lack of “genuine curiosity” about anything, so it struck home in a very real, scary way.

I felt ashamed. Had I really not given into the process? Before that appt. I was deciding whether I should continue seeing him, and even weirder, I was worried HE would not want to continue seeing ME. That should have been a red flag — not just about me, but about him. Not once have I worried a therapist would “reject me.” I’m the client, paying their bill, not the other way around.

Of course, I blamed myself and my rather justified paranoia re: mental/medical health professionals.

The thing is, there was no “transference.” I didn’t want to “please” him, what I wanted was connection with him. Every way I tried to connect, he seemed to want to veer me away from it and back to his comfort zone.

At the time, I told him I’d try harder, do better, because not only did he know all of my history (and that takes time), I had to admit there was some fear, there. He had the power of the ICD and DSM at his fingertips and I didn’t want him sticking me in a slot that would come back to haunt me. Bottom line?

That’s way too much power with someone wearing that many warped lenses, and the antithesis of a safe space to process your innermost life and struggles, wondering what kind of credibility-altering label he was going to slap on his notes about you.

I had a couple more sessions with him, but then, I got curious.

I began reading through my journals, looking back through our therapeutic relationship for the past 2 years, and I realized I’d felt no real connection with him. There wasn’t any form of therapeutic reciprocity, something that engenders trust and makes the client feel like they’re being seen and heard and believed.

I finally cancelled all my upcoming appointments and he emailed me to ask if that was on purpose. He didn’t like doing that kind of thing over email, but hey, I was the client and my terms were email. He respected that and I gave an overview of why I was terminating him, and therapy with him. I explained that what I felt I needed was help in the here and now, and while past traumas might inform the “NOW,” I had to deal with re-traumatization, daily, by the medical community and by the medications’ tardive effects, which include bouts of severe AKATHISIA when I’m in a withdrawal cycle.

The thing is, he’d said, “I know you struggle with trust issues, but I think you and I are on the same page about medications etc.” His words, paraphrased, but the allusion was clear: he didn’t believe medications for depression worked or helped much. Dennis, my old therapist, flat-out stated they hindered talk therapy. So, you know, that was the belief I’d been going on for 2 years with this guy.

In the end, when I responded to his email, he replied with a semblance of “I believe that you believe medications gave you brain damage and I’m sorry you didn’t feel like I understood your suffering.” Not verbatim, but close enough.

It was that moment when I knew finding a therapist would be much, much harder than I thought.

Now I want you to imagine, for just a moment, that you were in therapy, and this is how the therapist responded:

“I believe YOU believe your father beat you.”

“I believe you believe your husband is cheating on you.”

“I believe you believe you were raped.”

“I believe you believe you sustained invisible head trauma while in the military.”

“I believe YOU believe your ex-husband it stalking you.”

“I believe YOU believe your mother abandoned you when you were eight.”

It’s inconceivable, isn’t it?

So, I want you to imagine opening up to a therapist and saying:

I took medications that damaged my brain stem and impacted my vagus nerve function, among other systems. The result has been living, day-in, day-out, with progressive and disruptive neurological movement disorders that are terrifying. I don’t feel safe at a hospital. I don’t feel safe with medical professionals and that lack of security, along with the conditions, take a real toll on my everyday life and relationships.

While I have some fairly good medical providers, I’ve mostly been dismissed by the medical community, and this, despite the copious amounts of literature on the long-term effects of these medications, the conditions I have, and what caused them. Despite the drug maker’s own admissions in their boxed warnings on the meds. So, that’s why I’m here. I need help navigating all of that.

Now imagine, as you’re talking during that initial conversation, you feel it. You see it (flip, slide, fiddle) on their neutral countenance, complete with a practiced “concern” eyebrow-furrow, and you feel it because your limbic system is highly attuned to threats and danger. Like a horrible mutant power you wish you didn’t have, because so often it’s wrong, so it’s easier to just stay clear of all of it and do everything on your own.

But therapy, that’s a safe place. Right? Your therapist should want to know more about what’s happening and it what I say is true, doesn’t that inform, like…everything he/she/they do from that point forward?

Shouldn’t it?

Oftentimes — after years of being dismissed by medical professionals — the onus for medical mistreatment and harm gets placed on the victims by therapists as well.

Adding injury to injury, imagine the therapist using your fear, isolation, loneliness, pain, and lack of trust to stick you in that form, shmooshing you in until you blurp over the sides.

“Why is it so important to you that I believe you?”

“Why do you have such difficulty trusting me?”

“Why aren’t you more curious about how your childhood traumas could be impacting your physical health?”

I have really been looking into myself, taking ruthless personal inventory ever since I terminated therapy with him, wondering if I jumped the gun. Worried I’d inferred the wrong thing.

But the “powers that be” handed me a gift on a platter.

A while ago, I referred someone I know, a friend of a friend, to my therapist. The individual isn’t someone with whom I deal a whole lot, so I saw no conflict. However, just last week, this individual disclosed that his (my former) therapist suggested he get on medications for his depression.

Verrrry interestink. Much like his tepid answer on why he had a DSM-5 prominently displayed in his office, he said it was still a reliable diagnostic tool.

I suppose the real lack of curiosity wasn’t my lack and it seems my former therapist’s ability to Google, read, research what I’ve told him about AKATHISIA (and other drug harm) and listen to me, HEAR me — without that Phoropter — might have made him uncomfortable. Made him question the entire system he’s devoted his life to, which would indeed cause a decided lack of curiosity on his part.

Clearly, he’s not comfortable with being uncomfortable.

Maybe he should talk to someone about that.

Please… if you haven’t already, sign the petition to stop all mass-media drug advertising by pharmaceutical companies in the U.S. HERE and sign up for the Black Box Warning Initiative’s newsletter HERE.

*I* Believe that *You* Believe was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

We’ll get to the above in a moment…

But first, a confession. This is super-embarrassing, so bear with me.

I’m 100% unimpressed with celebrity.

There, I said it.

I don’t really care how famous someone is.

Fame isn’t what makes you valuable. What makes you valuable is how you choose to take your place in this world and do the HARD thing, at the expense of possibly EVERYTHING, because it’s the RIGHT thing.

There was nothing more terrifying than coming forward when I was diagnosed with drug-induced, then chronic, tardive akathisia.

After I did, slowly, surely, others came forward and I have mad respect for you — all the folks who do the hard thing of bringing akathisia to the public-awareness sphere. No one knows your names, and that’s okay, because it isn’t about you, it’s about what you’re trying to do.

There are people out there who have experienced akathisia and they are celebrities. Famous. And I get it, I get why they are unwilling to do what we do. They have so much more to lose, don’t they?

No. You had more to lose. I had more to lose because we were on our own.

So, I want you all to consider, for a moment, all YOU’VE lost. What if Bruce Springsteen, for example, had spoken out, hard and fast, about akathisia? Would it have saved you or someone you loved? Don’t think on that too much. It’s extremely painful to even consider it, isn’t it? So no, he doesn’t get a pass.

The thing is, *I* believe respect is earned, not given based on your fame or dollar value. There is nothing that provokes a lack of respect for someone in me faster than hypocrisy.

And look, it’s not that trying to get someone famous to advocate for my cause is beneath me…it’s just incredibly distasteful to watch because it’s beneath YOU.

YOU are doing the brave thing by speaking out. They aren’t. And if he hasn’t stepped up by now, he won’t. Maybe he can’t. And if he can’t, then it’s unbelievably disappointing to me that he behaves as if he can.

While I’m not in a place to judge, I do know this much. Fame and money give people a lot more options than someone like me or you. But fame can make you vulnerable if you care about the fame and all the comforts it affords you.

Especially when your fame rests on your reputation.

Especially when your fame is secondary and rides on the coattails of someone who actually did something noteworthy and deserving of recognition.

I know, ouch.

But the truth hurts, and my room is messy. So is everyone’s, and yet.

Here. We. Are.

Doing the hard, brave thing.

I’ve never written or created art to become famous. Fame is a nightmare. But I have created art as a way to connect to people that I normally might not connect to and now, art is an effective vehicle I’ve used to create awareness for akathisia.

One guy wrote in the YouTube comments on my first film “How Bad Can Good Be?” (never, ever, ever read YouTube comments!) that if I wanted to tell people about akathisia, why not just TELL THEM because my poem/art/film was “kind of annoying.”

Yes, I still giggle when I think of that comment.

I didn’t need to reply, I had a ton of people explain why.

But for the record, here’s my two cents : “Poetry heals the wounds inflicted by reason.”- Novalis

Lately, we’ve been revisiting anger as a response to medical harm, but I’d like to talk about a different kind of harm and personal responsibility.

I’ve read quite a few good books on that lately, some new releases, some not. Personal responsibility is a sticky wicket when it comes to being hurt by the medical system. Where does personal responsibility end and the System’s begin? That’s a multi-faceted question, and I suspect, varied depending on the individual circumstances.

So, I want to talk about personal responsibility as it relates to fame.

I don’t know that history will remember Michael J. Fox for his stellar acting, but they will remember his generosity and courageous fight to bring awareness to Parkinson’s Disease.

My guess? Michael wishes he would be remembered for his great acting. Here’s the thing: he had a choice to slink away, take medications, use all his fame and fortune to get himself right, straight, okay, so he could keep going, livin’ the dream.

He made a different call. And history will remember him for that. Someone someday will finally find a cure for Parkinson’s, and Michael might be long gone. But he’ll be a hero.

He doesn’t know how his good work will save anyone. That’s not why you do the good work.

You do it because you’re a good human being.

So to be clear, when you’re on top of the world and you continue to let people get harmed because you stay silent, because you don’t want to lose your place in the sun, and you allow people to think that you’re different, better — you will cross paths with the wrong person.

Or poet.

You see, I’m of the belief that when you are granted the wealth of attention (through dumb luck or hard work, doesn’t matter), and the adulation and riches that fame affords you, then you have a choice, because in today’s world those things usually come with a platform to do good.

But if instead of choosing to use your influence and fame to do the good thing, the hard thing, you choose to use that platform to further your own celebrity in the guise of “helping?”

Why, you deserve a faiku.

From a fellow Medium writer (used with permission), “K”:

FAIKU (fi KU) The faiku is a short form, Buddha bestowed upon poets the great gift of the Faiku. True faiku resembles an ascension and descension of Mt. Fuji.

5 steps
7 more steps
11 long steps to the top
7 steps down
5 steps

By climbing Fuji-san with your words you will discover the true nature of the human dilemma and the first noble truth — All life is suffering. A true faiku takes you up and down Fuji and reveals in its form and when flipped on its side, shows that the form is flipping you off, reminding you that man is truly fucked.

It’s a fun form, the faiku, open to interpretation, and one that’s especially useful when you feel like popping off on Twitter at the utter hypocrisy and bullshit of someone shifting their personal responsibility to use their fame for good and putting it onto someone else.

And you see, I know popping off on them…well, it isn’t The Way.

So, a faiku it is!

Now, I’m a fan of the 5–7–12–7–6 form of the faiku, based on my own faiku Zen and it’s okay. We’re allllll accepting of the many forms of faiku.

So! This faiku is brought to you today by Twitter and my “ARFKMRN”:

Cowardly Lyin’

Sir Map of Meaning
cowering behind Barbie-
Electra, preaching about ‘real men’ and ‘heroes’
as we confront this dragon,
weaponless, in your stead.

In closing, here’s the truth of it: all the things famous people are afraid of losing can’t and won’t protect them from akathisia. In fact, they almost lost everything because of akathisia.

Doesn’t that make AKATHISIA AWARENESS literally the most important cause of their lives? The, shall we say, biggest thing they can carry?

It sure faiku-ing does.

Akathisia and Art was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

Someone told me once that I was “a hero” when it comes to akathisia. Because despite its death-grip on my life, I’ve managed to accomplish so much.

I admit, right here, I felt a little boost of “awesome.”

Damn skippy I’ve survived and thrived, baby. Damn skippy I’m not like everyone else —

— and that’s when it hit me.

That attitude of I’m not like everyone else was an uncomfortable nudge in the direction of arrogance.

We look to people we admire who have been able to overcome huge obstacles in their lives to be who they are, where they are, but we don’t know anything about their everyday struggles, their everyday triumphs, and all the forces, both intrinsic and extrinsic, that compel them forward to succeed. We also don’t know about the zillions of “leg-ups” they’ve gotten from other people or the world.

No one, without exception, is “self-made.”

Sometimes it’s easy to forget that every success has had at least one or (many) more failures, but we only see the success, because who posts their failures on Instagram? Who includes face-plants in their autobiography? And if they do, it’s usually to further illustrate how indomitable their spirits are via “challenges and obstacles” rather than moments of “DOH.”

It reminds me the movie called Trading Places with Dan Aykroyd and Eddie Murphy. Two billionaire brothers, Mortimer and Randolph Duke, decide to bet on whether it’s “nature” or “nurture” that makes a person’s character.

Dan Aykroyd plays the part of Louis Winthorpe III, a wealthy managing director of the brother’s commodities-trading firm, Duke and Duke.

The Duke brothers decide to strip Louis of everything he has including, but not limited to, his reputation, job, social standing, fiancée, friends, opportunities, home — essentially his identity, meaning who he believes he is to, and in, the world — to see if he transcends the “unlucky” turn his life takes and rises to the top.

In his place, the Duke’s pick a young con artist played by Eddie Murphy named Billy Ray Valentine and give him “every advantage” Winthorpe had to see if it was in his nature to succeed, or if he was and would always be destined to be a conman.

The racially icky overtones aside, the movie remains a cult classic.

As the Dukes play with the lives of all these people — simply because they can — we watch as Louis falls deep into the dregs of human despair with each new horrific turn of events. People he’d called friends, his fiancé, turn on him when he turns to them for help, telling them he’d done nothing wrong. But they want nothing to do with him. The only person to take him in is a call girl, Ophelia, played by Jamie Lee Curtis, who shows him true compassion (with a tiny incentive when she realizes he means to reward her if she helps him). But her compassion came first. *wink*

Contrast that with Louis’ spoiled, rich, snotty fiancé, who says to him, after she bails him out of jail: “Have you lost your mind?”

What happens, of course, is Billy Ray finds out about the bet and he seeks Louis out so they can work together to teach the meddling billionaires a lesson.

Billy Ray couldn’t have done it alone. Louis couldn’t have done it alone. And it was a team effort, not just the stars, but the many people who stood up for “the little guy(s).”

But our heroes, Billy Ray and Louis, they teamed up using both “nature and nurture” to come out on top. They didn’t take a handful of cash each and survive.

Their goal was to thrive, conquer, and stop the Dukes from abusing their positions of power.

There are things in this world that warrant true admiration, but surviving isn’t one of them.

We survive because our bodies have a million systems within us, and their sole purpose is to keep us alive. We’re not in charge of, nor aware, of most of them.

You aren’t smarter than other people if you “survive” or are surviving akathisia. You’re not stronger, more courageous, and you’re certainly not weak-minded, foolish, or lacking willpower if akathisia kicks your ass, every. Single. Day.

The truth?

We all wear masks for the world and even for ourselves. And while we’re similar in many ways, no one is like anyone else, and to buy into that is to believe that I have something “special” about me that allows me to accomplish things others can’t while suffering with akathisia.

Look, if I had a nickel for every person (who was not suffering with akathisia, let alone anything else) who has boasted to me that they could or were going to or planned on or were thinking about writing a novel, I wouldn’t need to worry about money ever again.

Writing books is hard work. It’s a commitment of time and energy most people are unwilling to make. It’s harder work than anything I’ve ever done, and you’re looking at someone who worked for the Division of Child and Family Services, CPS, and watched kids getting removed from their parent’s custody by force. I’ve worked in addiction treatment centers, I’ve worked in some rough fields, but writing a novel is harder because it’s never done until it’s done and even then, it’s not done. There are no days off. No holidays. So when people tell me they have a great idea for a novel, I tell them to write it first, then tell me.

So, to see my accomplishments as anything other than a bunch of hardcore failures mingled with a handful of modest triumphs would be unrealistic.

Showing my vulnerability, my imperfections, my weaknesses shouldn’t dash anyone’s hopes.

It should reassure you that I am exactly as strong as you on your best days and exactly as fragile as you are on your worst.

I preach empathy and compassion as a professional writer, because without them, in my humble opinion, you not only will fail as a writer, you’ll most certainly fail as a human being.

You cannot have true compassion without empathy. But I’d like to suggest to you today that you also can’t have either without gratitude. And all of that comes from recognizing that where you are, right now, is a much better place then someone else, somewhere. No matter how bad it gets.

I’ve been in the throes of akathisia to the point where I began looking for sharp objects to jab into my neck. On those days, I was fortunate enough to have someone here to restrain me. If I hadn’t? Who knows? Maybe I would have thought, “No way, I couldn’t let someone find me like that,” and I would have found another way to ride out the storm.

The point?

You need to identify what, if any, control or “say” you have in how much command or presence akathisia has in your life and world. Identify, not decide. There’s a difference.

Anyone who preaches that akathisia is a matter of attitude, mind over matter, or willpower needs to be schooled, zip-tied to a chair in a dark room with me and a blowtorch.

And this is important. How much “say” akathisia has in my world on any given day is radically different than someone who just barely came off meds, in acute withdrawal, or in drug-induced akathisia.

How much “say” it has on a Wednesday in my world after a semi-decent night’s sleep is different than someone who is on the street, driven to find their next vehicle for relief, whatever that looks like — I have zero judgment on that, and if you do?

Take care and “but for the grace…”

Bottom line, I am not stronger than you. I am not more intelligent than you. But I have honed my skills as a writer and artist over the years because of a million variables that made me who I am, what I do and love, and circumstances forced me to get highly creative at times.

I am also not a proponent of “positive attitude.” Have you ever noticed people who preach “positivity” have a lot of things to feel positive about? So, I’m not here to blow sunshine up your arse. But I am here to tell you that we are not meant to stay inert.

We aren’t meant to simply accept our fates. We’re too easily wooed by the promises of relief to stop and look at what we’re doing that could be making our lives, and the lives of those around us, worse.

That’s why identifying how akathisia presents for you, what triggers it, what times of day are worse, what, if anything, brings relief, and so on, is the first step in gaining a modicum of sanity within its clutches. Learn about your brand of it.

Now, this next bit is for those who are family members with loved ones who have akathisia.

Try, for a second, to forget how this is impacting you. Look at all the things you can do, the things you have, the privileges you enjoy that your loved one does not, cannot, due to their condition. Remember that empathy means you are in their shoes, restless and feeling the terror every moment, and the compassion for them comes from realizing that no one, NO ONE would choose this, and to think they would is simply your defense mechanism against your own fear.

Yes, it’s that horrific, yes, they need you now more than ever, and yes, it was quite inconvenient for US when we developed it, so here is the challenge and requirement that come with love. You show up, no matter what.

Do you ever wonder what it would be like to be unable to REST? To find no peace, no matter how hard you try and are you so sure that if you had been the unlucky one to take the wrong medication and develop akathisia, you would be doing better than your loved one? You can’t know, can you. Are you secretly relieved it didn’t happen to you?

So I want you to feel the gratitude all the way into your bones. Thank the world, your life, your luck, if you believe in a power or thing larger than you, thank that for everything you are and have — everything that your loved one does not have, cannot be or enjoy anymore. Are you thinking of how lucky your life is? Are you feeling how healthy your body and mind are?

Good. Now, imagine some callous billionaires removing all of it from your life.

Because that, friends, is exactly what happened to your loved one.

The most important takeaway is this: Life has a funny way of coming full-circle.

If you aren’t 100% supportive of your loved one while they suffer through this horrific experience, or you go so far as to doubt they are really suffering in favor of a doctor’s opinion or deferring to a mental-illness diagnosis then understand: what is given can be taken away.

And no, those CEOs don’t have your name on some hitlist — they’d have to give a shit about you or anyone else but themselves — they’d have to know you exist. They don’t, and like the Duke brothers, they don’t care.

You’re just another income stream waiting to happen.

And if all you choose to see is what your loved one isn’t doing to help themselves, understand, you have more choices than they do. Your lack of support is enabling the bad behavior of too many prescribers and the System that injured them, and you, peripherally.

So this is where you have a choice to practice empathy, compassion, and gratitude. Then be a real hero in someone’s life.

Whether you’re family, a friend, or a medical professional, the reason someone suffering from akathisia is acting nuts is because they’re being driven nuts by an untenable condition that, under the best circumstances, drives the strongest, most creative, intelligent, and strong of us into bouts of insanity.

We need you. All of you.

And much like the movie, Trading Places, it takes the hard-earned wisdom of being wrung out and through the System, coupled with those who are lucky enough to be in its good graces — together — to bring down the bad behavior of moneyed interest in our healthcare.

Thriving Throughout, Within Akathisia was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

“A black box warning, or “boxed warning,” is an FDA warning to alert consumers about serious or life-threatening side effects a drug may have. The waring is found on the package insert for prescription drugs and is the most serious warning given by the FDA.

A drug gets a black box warning when it has potentially serious adverse reactions that could lead to hospitalization and death. A black box warning also explains how the reactions may be worse in certain groups of people, such as for women who are pregnant or for children or the elderly.”

We will be talking about the Black Box Warning Initiative and our three main goals:

• End drug advertising
• Create Awareness
• Mandatory physician reporting on all permanently disabling or fatal side effects, including, but not limited to, drug-induced suicides.

Black Box Warning Initiative:
https://www.blackboxwarn.org/

You Tube channel: https://www.youtube.com/channel/UCmHlZIJT4ywupfWlclxKkxQ

Part of creating awareness is a 4-part film project. See the first film, “You Have Just Been Black Box Warned,” here.

Live with Devon Harris was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

R-E-S-P-E-C-T, find out what it means to me…

One of my dad’s favorite words to wield at us was “respect.” He demanded our respect because he put a roof over our heads. My mom used to counter with “You can’t force people to respect you.”

She was right, but also, Dad was right, too in a way. He just didn’t use the proper form of the word.

Respect isn’t demanded, it’s earned. But as an adverb, one can speak or behave respectfully, and that’s what Dad wanted. He didn’t want us smarting off, speaking to him with disrespect. He did deserve that.

But as a noun, respect isn’t something you can feel for someone you don’t respect. It’s like forcing someone to love. Not possible. They can pretend they love you. But they don’t feel it.

Sometimes people believe having power, money, status, that earns you respect, but more often than not, people don’t respect you, they respect your money, power, status, or the ability to gain those things. Being liked doesn’t mean you are respected, either.

Finally, fear is not respect. But in certain circumstances, fear is a manifestation of respect when it comes to things that are out of our control.

I wouldn’t like, love, or envy a class-5 hurricane, but I’d respect it and get the hell outta the way if it was heading toward me. Which brings me to hubris.

The history of the word “hubris” is long and weird, but when you ask most people what it means, they’ll tell you it’s thinking you’re able to do things no one can or should do. In other words, it isn’t just overestimating one’s abilities, it’s overestimating the human ability to do things human beings were not meant to do. Yes, “playing god” comes to mind.

So, to stand in the path of a class-5 hurricane, believing you can walk into the eye peacefully isn’t just hubristic, it’s stupid.

And while history has proved to us that human beings can do the once-thought “impossible,” understand, that isn’t because we can do anything, it’s that we assumed for too long we knew the limitations of god’s (whatever you conceive that to be) power (omnipotence aside) and we measured our own potential through those assumptions.

So, for the purposes of this post today, I’m going to contrast “respect” with “hubris” and how respecting something that clearly has you by the shorthairs is smart, and why feeling like you have power over something that could have you by the shorthairs (but doesn’t yet) is dangerous.

THE ICARUS EFFECT

No, not the dystopian fiction novel of the same name (haven’t read it, no idea), the mythological character, Icarus, whose father, Daedalus, fashioned wings from feathers and wax to escape imprisonment. As Icarus and his father “flew” through the sky to their freedom, Icarus was overcome with the ecstasy of flight and forgot his father’s wisdom and warning: don’t fly too close to the sun.

Now, this is a story of innocent hubris. The punishment for Icarus? He fell to the sea and to his death when the sun’s heat melted all the wax.

In a more Judeo-Christian bent, according to Genesis, the Babylonians wanted to build a great city and build a tower so grand, the top would penetrate the realm of God, Heaven. According to the story, God was so upset by this form of defiant hubris, he confounded the day laborer’s speech so they couldn’t communicate.

I mean, think about it. One minute you’re speaking Babylonian, and you say, “Hey, grab me a two-buh-four,” but suddenly the other guy speaks Swahili. No wonder that city wasn’t built.

Oh, and the lesson was that only God gets to live in Heaven, and you shouldn’t try and do stuff only eternal, omniscient beings can do.

So no death, but they were confounded, confused, befuddled, dumbfounded, and all the other synonyms of “HUH?!” you can think of.

Innocent hubris isn’t due to a lack of respect, but more of a senseless loss of reason in the wake of success. This type of hubris is the foundational element of every hero’s journey, from ancient myth to present-day superhero movies.

It’s the failure that reminds us of our limits.

Going back to Icarus and Daedalus, understand — it wasn’t hubristic to fly too close to the sun. It was hubristic to presume man could fly.

Daedalus knew this. Icarus was caught up in the thrill of the successful flight. He wasn’t careful, and some versions suggest that the sun god, Apollo, lured Icarus ever higher, so his fall would be spectacular and serve as a warning to others.

PLAYING GOD

Iron Monger followed in Iron Man’s flight steps, as it were, and flew too high. In the Marvel® movie, Jeff Bridges’ character Obadiah Stane famously tells Tony Stark (Ironman®, sorry, should have done a spoiler alert, my bad) that he’s “never felt better!” And as he flew higher and higher, Tony asks him if he’d worked out “the icing problem.”

“Icing problem? What icing probl-ahhhh!”

So based on his own fall, Tony Stark’s innocent hubris, he learned to respect the laws of nature and gravity, and then, of course, solved them, which is why it’s not real.

But Iron Monger (Bridges) had defiant hubris and defiant hubris is another beast.

Defiant hubris is done with the determination of will, ignoring the possibility of failure and going so far as to place other people in harm’s way to avoid failure or the appearance of failure. It’s forging ahead, despite the risks or danger.

Nearly every day, I encounter defiant hubris in the work of raising awareness for dangerous side effects.

“I quit Zoloft with no problem at all. What joggle? My leg doesn’t joggle.”

“My depression started in the WOMB. My meth-addicted mother told me so.”

“These medications are perfectly safe to take for life. It’s stressful to have major depressive disorder for life, which is why I prescribe Valium to all my depressed patients.”

My response?

“Hey, talk to the FDA. I didn’t say they were dangerous. The FDA did, oh, and the drug makers did. Kthanksbye.”

I made fun of my doctor for having a DSM-5 on his shelf. He laughed and said, “Yeah, well. It’s only a tool.”

I told him he was a tool. Then he said, “What I mean is, it has some diagnostic value.”

I said, “Oh, you mean for insurance codes?”

Him:

And yes, we have that kind of relationship, based on respect for each other’s personhood. But.

I’ll never forget the look on his face when I asked him if he’d ever prescribe atypical antipsychotics or benzodiazepines to one of his kids.

He didn’t answer me, by the way. The cognitive dissonance was too much for him to answer me.

IT’S (NOT) A MIRACLE! HALLELUJAH…

The problem we face as a healthcare reform organization is that too many medical professionals’ livelihoods depend on them believing that drug makers have found long-term, viable treatment options for severe, clinical depression, anxiety disorders, bipolar disorder, schizophrenia, etc.

Back in the early late 19th and early 20th centuries, the medical community found a modicum of success through various calming agents, like barbiturates, in creating a docile population in “insane asylums” and “mental institutions.”

Much like today, if you had money, you were given a longer leash to express your “crazy.” But when you didn’t, and other people had the power, or you became a nuisance, you could be committed for life and chemically lobotomized, or actually lobotomized, a practice that shockingly continued into the late, late 20th century, believe it or not.

It’s been in the last few decades that the innocent hubris of medicine turned defiant, it did so with a vengeance.

Maybe it was the sunk-cost fallacy, but whatever the case, drugs made for one thing started to get used for other things based on their side effects. Like…

“Welp, this drug doesn’t help with COPD, but it sure calms these folks down, so hey, how about a repurpose?”

“Willful ignorance” is what you have if you’re unwilling to examine evidence that contradicts what you think you know. That’s one thing if it’s just me, a writer. It’s another when you have the “respect” afforded you by medical training that’s been ingrained in our cultural ethos.

“With great power comes great responsibility” said Uncle Ben to Peter Parker, and how many times did the friendly neighborhood Icarus get smacked outta the sky?

I recently posted about akathisia and how it had come back. Thankfully, it was temporary, but while in the throes of it? It was like the beginning, only worse — because I knew what “worse” felt like.

I’ve had a handle on akathisia for some time now, but I haven’t written about it for the very reasons I stated, above. I can’t explain, in detail, everything we’ve done and tried to get me here, and if I tried, I’d miss something.

It would be outrageously irresponsible to tell people I found my way out of akathisia, even though my track record is better than most. I’ve also had it for longer than most, so that’s a whole different beast.

In other words, I lost respect for the class-5 hurricane that is the damage of akathisia and other neurological movement disorders brought on by long-term medication mismanagement.

I started to let my brain injury protocols slip. I started going out more, allowing more stress in and on my CNS, I allowed myself to stay up too late, I didn’t rest, I dove back into attempts at socializing, and I let my strict dietary protocols slip, using this childish victim-bullshit, like, “Haven’t I given up enough already? Haven’t I done everything to heal, and now that I feel better, why can’t I just be like other people once in a while…”

All that to justify a stupid sugar cookie from the local bakery. And no, a sugar cookie isn’t what slipped my brain and body back into akathisia. Because the most important word in that whole paragraph? Can you guess what it is?

VICTIM. Or rather, victim-bullshit. “The world owes me because the world hurt me. It isn’t fair. I deserve…”

I “deserve” exactly whatever lands on my plate. We all do. That’s not to suggest I deserved brain damage from medications or from an assault. But when you are victimized, you have a choice, at some point, about staying there and that point is different for everyone.

I had a young woman contact me and beg me for help. She’d had unrelenting akathisia for a couple of months. Someone else I knew vouched for her, so I engaged.

Thirty infuriating minutes later, I cut her off. She didn’t want to hear that the drugs she was taking were likely causing akathisia. She wanted to know what other pills could make it subside. She didn’t want to hear that if a poison is blinding you, you stop drinking the poison. She wanted a magic potion to help her see better. She didn’t want to hear that she might have to withdraw off medications, (possibly, with her doctor’s guidance etc.) to find her way out. That she’d have to take control of her own health, get the #*$% off of social media, for starters, learn about the brain, and maybe go to a brain injury specialist, etc. No, no.

She wanted my secret. She wanted to know how I’ve been able to do “all I’ve done in my life” while suffering, to varying degrees, with akathisia. I told her I had no other choice. Because no one told me, back in 1997 and then in 2004, about Black Box Warnings, and that bipolar II was ‘a psychiatric fad that overshot the mark and led to unnecessary medication for many patients on flimsy grounds.’

(Again, don’t argue with me. Argue with guy who chaired the creation of the DSM-IV and the “creation” of bipolar II, Dr. Allen Frances. I’m not doing this for you. Read the info or not.)

I don’t have a formula, a secret. I have had a long, arduous, painful, humbling journey and it continues, and about a month ago, see, I forgot all the work I did and began thinking in ways that, in turn, generated a sense of entitlement, which is the earmark of victimhood.

“Someone owes me something.”

Life doesn’t owe me anything, and in fact, I owe Life everything.

In short, I was so giddy at the seemingly permanent state of “no akathisia,” I started climbing, higher and higher, pushing myself to make up for lost time, “blurry legging” it, all the while, the small whisper — Careful — went unheeded.

Had I defiantly continued on the path of believing akathisia was 100% out of my control, it would have been.

THAT IS NOT TO SUGGEST THOSE WITH ACUTE AKATHISIA HAVE ANY CONTROL OVER IT.

But *I* have a modicum of control over how bad it gets, and whether it takes the reins of my day or not and that control didn’t come easy or fast. I’ve been working a solid 25 years to get here.

Because when I had Zoloft-induced akathisia, I started therapy. I got my body healthy. I began taking care of myself, not knowing I was really taking care of head trauma from an assault. I was told it was “bipolar II disorder” and I believed it. The best thing that could have happened to me? I lost my job and all access to medical insurance.

I went cold-turkey off an entire cocktail of psych meds when, after sustaining the head injury and developing Wernicke’s aphasia (receptive aphasia) right after, thus flunking out of college, I was seen at the local Valley Mental Health clinic, sliding scale, by the fantabulous Utah Brain Doctor, Dr. Kay Philippi, and yeah, going cold turkey from her cocktail of neuroleptics and SSRIs almost killed me.

When I married my second husband, ironically for insurance purposes, since we wanted to wait, I still held out. I wanted to “treat” my symptoms naturally. Had I not been misdiagnosed by an arrogant, hubristic “rock star” doctor named Dr. Noel. Gardner, I would have likely recovered and been accurately diagnosed with the seizure disorder and brain injury, rather than his definition of what I had, ready for this one?

“A bipolar freak-out.” — Dr. Noel C. Gardner, bipolar II Freak-out expert.

DEFIANT HUBRIS DISASTERS

*Slow clap*

Yes, Noel, that “expert status?” Well deserved. “Bi-polar freak out.”

Yes, he’s got a Wikipedia page because he was the key witness in a competency hearing for a famous child rapist in Utah, the man who kidnapped Elizabeth Smart.

When I went into Noel’s office, he was so kind. He listened with such empathy. Finally, someone who understood the pain I’d been in. He told me I’d suffered enough, and if I didn’t medicate the “bipolar disorder,” it would get progressively worse. In other words, I had no choice. I’d terrified my small children with my seizure, sorry, “bipolar freak out,” so I HAD to stop being so stubborn and listen to the good doctor.

Then, he pitched me on a brand-new treatment for bipolar disorder, a new drug called Abilify, a next-generation miracle! And an anti-psychotic. He’d just come in from out of town and had given an important speech somewhere about this drug and its efficacy in treating bipolar disorder, so he knew.

When I called him the first morning after 10 mg. of Abilify, I unable to hold still, I remember telling him I felt like I was literally going out of my mind. Like “my bones are trying to escape my body,” and YEAH, I remember the words vividly.

Instead of telling me I had drug-induced akathisia (because this feeling was nowhere NEAR pleasant) he told me I was in a mania, and he lowered the dose of the drug to 5 mg. Then to 2.5. That sweet spot of just enough akathisia to wake me up, get me moving, along with all the other drugs to combat the other shit that was happening. The brain damage that was occurring.

Now, I saw the good doctor Gardener in 2004. Using the clever search engine on our Home Page of the Black Box Warning Initiative, which takes me to ProPublica’s Dollars for Doctors, I searched Noel’s payments going back to 2009. Well, we’ll let 2010 speak for itself, shall we?

Yeah, I know. I got tired of all the numbers, so I just took a short cut and added up all the payments he’s taken from pharmaceutical companies — Oh, please keep in mind? This is public record. Also, this is only the amounts the Federal government knows about, so this might be the tip of the ol’ iceberg here — from 2013 to 2018.

$1,192,129.00

This is money Dr. Gardener made from drug companies, kids. Not from being a doctor.

I added some of 2010 and 2011 in there as well, but…you get the idea. I remember how we had to pay $900 a bottle for Latuda before our premium was met. I can’t really make a good estimate of what it’s cost me, personally, to have to withdraw off the medications Noel started me on. After my “bipolar freak-out.”

You know, where you have an aura, then space out, and headache lasting hours, post-ictal aphasia, confusion….right? Classic bipolar II, amIright?

But my therapist, a brain injury specialist who was that uninformed, and Dr. Noel, well, they got me allll sorted out.

People have asked me why I don’t sue. Sue who, exactly? The original doc who gave me the diagnosis back in 1997? The guy who banged up my head in the first place? The family practitioner who was so effing ignorant, she put me on Pristiq, an SNRI, in addition to the 2 SSRI’s I was on, because she doesn’t know those drugs work at cross-purposes? Why would I sue her for her innocent hubris. Or rather, her ignorant hubris.

But I gotta say. I look at that huge amount of money, and I feel rage. I mean, just ONE year’s take of Noel’s shill money would pay for my neuro-therapy, my dietary needs, the medications I take to mitigate the suffering and slow the damage, damage that actually IS progressive now, to my brain. Damage the drugs he prescribed did and continue to do even though I’m off them. Even one year of the lowest shill payment could fund the Black Box Warning Initiative’s cost, which we bear alone.

Although he’s started his very own non-profit to help those in need of mental health treatment, and hm, maybe assuage some guilt? No, no, it’s to make more money, or he’d be helping people like me, he’s still one of the main reasons I need medication to survive, walk, talk, function. Him.

Why not sue? Well. Dr. Gardner left himself so many outs, there’s no way to prove which drug did what and when. Like trapping a tomato seed under your finger. That’s how good he is. He is a decent man who likely can’t see for all the wealth he’s accumulated at the cost of so many lives. His entire LIFE has been built on poisoning people.

Tell me, was it worth it, Noel? It wasn’t to me.

No, I don’t want to sue him or any of them. But I look at his face and I feel like curling into a ball and sobbing. Why wasn’t he right? Why can’t I be wrong, about all of it? Look at his face, I wanna just feel his reassurances again and believe.

WAS I WORTH IT?

Yes, I want to feel safe again and believe.

But I’m not a goddamned child. What he owes me? Nothing. But I owe it to him, others, to share what happened. What he did. Willfully, defiantly, hubristically, and maybe innocently in the beginning, but now? Noel? You’ve got zero excuses.

No, I’m not out for revenge, this is not retribution. Bottom line, whatever’s on my plate is what I dish up in the moment, now. I can’t un-do the past.

Ruining someone’s life by putting them through the legal wringer is chopping off my own nose to spite my face because me, my family, would be put through the legal wringer, too, and at the end of the day, what I want is to feel better and be okay again.

But that isn’t going to happen if I’m mired in revenge. I have limited time, choices, energy. How I choose to use those is how I have any control over my quality of life, now.

So. I write. I share, I fight, I rest, and I remember, always, to remain humble in the face of the things I do not know or understand.

I’m just going by what the drug-makers told me. “By taking these drugs, you might sustain permanent brain damage.”

Gosh, Dr. Gardner, that would have been neat information in 2004.

And here’s the info on Abilify.

I’m not an MD and I have this information. The FDA has this information. The DRUG MAKERS have this information. Why don’t YOU have this information, Dr. Gardner? You do. You did. You had it and have it and you didn’t tell me.

This info could have saved my life. Lack of this info will take other lives. Live with that. Sit with that and tell me:

Were we, your patients, worth it?

So if you want to call me anything at all — I think you could say I am your reckoning.

Coming soon: the song Worth It, written, performed by me. Because it’s my job to create meaning from the gift that is Life, even throughout the struggle of living with the consequences of the bad or ignorant actions of others.

Create meaning out of the pain. The senseless, greed-driven, hubristic, defiant, totally preventable pain.

RESPECT v. HUBRIS was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.

My brother used to say that when we’d hear my dad pull into the garage.

“It’s alive.”

It was a little mean, but so was my dad. And it was funny even when he did it around my dad because Dad mellowed with age. Isn’t that what one hopes? That the “mean” ages out of people? I’d noticed the really sweet older people I know go the other way, though.

My mom, who was not necessarily mean, would say pretty outrageous things to her home health nurse. As if the poor woman didn’t know she was overweight.

I had to instruct my elderly mother to refrain from calling her nurse “a cow” while she was still in the room.

Needless to say, and what that has to do with akathisia is this: I’ve been cautiously optimistic.

It’s been weeks, and I felt like I finally had a handle on the daily bouts of akathisia.

My windows were opening wider, each day. I was slowly reincorporating my old life back into my routines. I was coming down on medications that had impacted other quality-of-life issues because akathisia was just…gone.

I’d gone to see a brain injury specialist. Learned possible causes and developed a ton of different treatment protocols for mitigating the pain and horror and sometimes the restlessness (motor only) of akathisia.

I also went to an endocrine specialist.

It turns out, the medications that mess with your dopamine receptors and serotonin etc. do a number on vital organs as well.

I didn’t know the pancreas had neurotransmitters, but they do. “Hello metabolic syndrome!”

I didn’t know the medications I was on destroyed my ability to absorb — not produce — thyroid hormones. “Hello ‘clinically normal’ thyroid blood levels and what’s poppin’ every, single symptom of hypo (low) thyroid!”

I DID know about the gut-brain, but how fun, after eliminating all processed foods, gluten, dairy, most carbs, sugar, “gums” (locust bean gum, guar gum, etc.) and a buhzillion other foods that cause inflammation in the body/brain/gut, I’ve been feeling akathisia inching its way back into my daily life.

I’d been cutting back on a beta blocker so I could start weight training again, but that experience still is very much like this for me.

It felt gone. I even said it out loud to a couple of people.

There’s nothing like gut-wrenching pain to make you “a believer” again. In anything and everything. I got cocky.

“I said it out loud, and god heard me.”

“I said it out loud, and Satan heard me.”

“I said it out loud and didn’t knock on wood.”

“I’m being punished for that _____ I wrote or thing I did or said OR…”

Or akathisia, as my husband and I have often said, is a moving target and brain damage isn’t “fixed” overnight. Or even in a few months. Almost a year. More than a year, actually. Not the reprieve, the hard work, daily work.

The trauma of a chemical brain injury comes from the destruction of your trust in the medical system. Even if you have great, supportive doctors like I did — doctors who aren’t so busy covering their asses so you won’t sue them — who do whatever they can to help you, it was an easily-won faith from the time we were children, to trust our doctors. Trust the System.

Now, even docs I like terrify me. The hospital feels like the most unsafe place I can go, even if it’s for something unrelated to akathisia.

The way I was treated, mistreated, by more than a couple “specialists” in the movement disorder field of neurology — they did the most harm.

Contemptuously slapping my chart with “personality disorders” and invalidating my subjective experience while simultaneously arguing with their own literature on how akathisia can present left me feeling more traumatized than withdrawing off medications, which I feel like I’ve never really recovered from back in 2011.

I have a TCBI.

Traumatic Chemical Brain Injury.

And that doesn’t just go away. I learned this the hard way when today, I finally stopped blaming my outer world for the rising levels of agitation, the blind rages, the despair, and the suicidality, the begging god to make it stop, the total devastation.

Looking back on the long reprieve and realizing it’s back, returning like a houseguest who never took its guitar, so you knew, on some level, it might return. (A nod to The Goodbye Girl, there, and yes, showing my age.)

And it doesn’t mellow with age. It gave me a reprieve and I thought I’d found my way out at last. But it was simply planning on my cautious optimism, my hope, and my near-certainty.

Like any dynamic, “living” thing, akathisia must feed on something.

It’s Alive was originally published in Akathisia on Medium, where people are continuing the conversation by highlighting and responding to this story.