Train Wreck: How Mental Health Care in America Got Derailed

“Drug Train” © JACW Photography

Have you ever been punched in the gut? Or fallen, had the wind knocked right-the-hell outta ya? Yeah, me too. It can be a humbling experience. But if you know me at all, you’d know: I am anything but humble.

My name is J.A. Carter-Winward, and I live in the suburbs of Northern Utah. I’m a writer, poet, performer, artist, and some people don’t like me so much because, well… “humility” is a virtue of which I possess very little — and that’s actually sort of ridiculous, because I have countless reasons to be humble. I mean…I suck at a lot of stuff. Seriously suck. I have “zero” reason to think I’m awesome, really. I mean, I talk quite a bit of shit for someone who can’t walk a straight line.

My lack of humility, we could even call it pride or — dare I say it? Hubris — yeah, okay so I’d thought the sin of hubris would be what would eventually buckle my legs and knock the breath clean out of me. I thought for sure my attitude would be the thing that smacked my ass down.

I could not have imagined that my nemesis would be an innocuous, little, round, white pill.

In recent months, years, even, antidepressants have come under fire. There’s been numerous studies, reports, and research appearing in the mainstream media of the ineffectiveness — even the fallacy — that antidepressants do anything to treat depression, other than provide a placebo effect.

But when I speak of my nemesis, this little pill was not an SSRI, or even an SNRI

Just like “Charcoal gray is the new black” or “Spoken Word” is the new “Beat Poetry,” or “Fifty Shades of Gray” is the new “Housewife Porn,” (shudder), the new SSRIs are “second-generation atypical anti-psychotics,” or “atypicals, as the folks in the field know them, or, I like to call them AAPs. Why are they the new SSRIs? Because drug companies are now claiming AAPs can do what SSRIs cannot, and have not done (since America is already figuring it out): treat depression.

antidepressant FAIL

Many journalists, investigative reporters and the like, even people in the field, psychiatrists, mental health professionals, they have diligently revealed the truth behind the smoke, mirrors, dollar bills and coins behind antidepressant clinical trials, research, (rabid) prescribing and use — all to shed light on the potential lethal consequences of these medications: drug-induced akathisia.

But SSRIs are merely one way to whack the backs of an unsuspecting public’s knees; people searching for the “Little Pill that Could.” The “I think I can, I think I can,” or, more aptly, the “I think it will, I think it will…” hmm, will what?

Make this constant sadness disappear from my life!

Help my son get his life back together. I want to see him smile — it’s been so long.

Get my husband back to his old, jocular self again.

When it comes to antidepressants, these are all wishful thoughts at best, placing hopes in an engine powered by promises, not proof. Thanks to people like Robert Whitaker, author of Mad in America, and Bob Fiddaman, author, blogger, and researcher in the UK, SSRIs have been exposed for what they truly are: engines that not only can’t get you over the hill of unhappiness, but won’t — and on top of it, could very well derail you emotionally or those you love, within days, weeks, or months.

Enter AAPs. Yes, there are some new pills in town, and they’ve been approved by the FDA for not only bipolar depression, but run-of-the-mill, #1-cause-of-disability-in-America-today depression as well. AAPs are the new “add-ons,” booster meds, or, as I like to call them, the “caboose medication” to add to your impotent drug train, traversing the uphill battle of depression.

Yet, AAPs, like an errant caboose, can whip around and bite you in the ass when things go the wrong way — knocking you to the ground, breathless — that, or six feet under it.

I should know. I was tied to the tracks.

If you’ve read anything about psychiatric medications, you know about the link to suicide and violence with the use of psychiatric medications. Tragic, heartbreaking stories of young people, taking their own lives, murder-suicides, and even mass shootings. The survivors left behind in the wake of losses, after drug-induced akathisia drove their loved ones to take their lives and perhaps even other lives with them.

I have read stories of people who have had akathisia (past-tense); I felt the horror of their experiences in their words, the utter agony they recall with dread, almost as if they fear it a specter, and to invoke the very name of it would recall its visitation upon them again. Bruce Springsteen does it with a certain, horrific clarity in his memoir, Born to Run:Home front

Mild post tour depression can usually be expected. Sometime in June I noticed I wasn’t feeling all that well. The shows are an insane high. The adulation, the touring company, the fact that it’s all about you. When you come off the road, that stops on a dime and you’re a father and husband but now the kids are driving, so you’re an out of work chauffeur. The bump is natural but the crash that I experienced this time was something else altogether. It was hard to explain, bearing symptoms I’d never encountered before in my life.

I had an attack of what was called “agitated depression”. During this period, I was so profoundly uncomfortable in my own skin that I just wanted OUT. It feels dangerous and bring plenty of unwanted thoughts. I was uncomfortable doing anything. Standing …walking …sitting down…everything brought waves of an agitated anxiety that I’d spend every waking minute trying to dispel. Demise and foreboding were all that awaited and sleep was the only respite. During waking hours, I’d spend the day trying to find a position I would feel all right in for the next few minutes. I was not hyper. In fact, I was too depressed to concentrate on anything of substance.

I’d pace the room looking for the twelve square inches of carpet where I might find release. If I could get myself to work out, that might produce a short relief, but really all I wanted was the bed, the bed, the bed, the bed and unconsciousness. I spent good portions of the day with the covers up to my nose waiting for it to stop. Reading, even watching television, felt beyond my ability. All my favorite things — listening to music, watching some film noir — caused such unbearable anxiety in me because they were undoable. Once I was cut off from all my favorite things, the things that tell me who I am, I felt myself dangerously slipping away. I became a stranger in a borrowed and disagreeable body and mind.

This lasted for six weeks. All the while we were overseas. It affected me physically, sexually, emotionally, spiritually, you name it. It all went out the door. I was truly unsure if I could ever perform in this condition. The fire in me felt like it had gone out and I felt dark and hollow inside. Bad thoughts had a heyday. If I can’t work, how will I provide for my family? Will I be bedridden? Who the fuck am I? You feel the thinness of the veil of our identity and an accompanying panic that seems to be just around the corner.

I couldn’t live like this, not forever. For the first time, I felt I understood what drives people toward the abyss. The fact that I understood this, that I could feel this, emptied my heart out and left me in a cold fright. There was no life here, just an endless irritating existential angst embedded in my bones. It was demanding answers that I did not have.

And there was no respite. If I was awake, it was happening. So …I’d try to sleep; twelve, fourteen hours weren’t enough. I hated the gray light of morning. It would mean the day was coming. The day, when people would be waking up, going to work, eating, drinking, laughing, fucking. The day when you’re supposed to rise and shine, be filled with purpose, with life. I couldn’t get out of bed. Hell, I couldn’t even get a hard-on. It was like all my notorious energy, something that had been mine to command for most of my life, had been cruelly stolen away. I was a walking husk. — excerpt from Born to Run, by Bruce Springsteen

https://www.amazon.com/Born-Run-Bruce-Springsteen/dp/1501141511

Yes, thanks to many people, including Mr. Springsteen, Robert Whitaker and the like, SSRIs, and those who manufacture, sell, and prescribe them, are getting an uncomfortable spotlight shined right in their faces.

Today, however, right here and now, you are reading the words of someone who has tardive akathisia; “tardive” means “late appearing,” and in the medical field, that means the side effect doesn’t manifest until after the drug has been discontinued.

I stopped taking the AAP, Latuda, (lurasidone HCl, made by Sumitomo Dainippon Pharma Co., Ltd., and marketed in the U.S. by Sunovion,) almost 11 months ago, and I still wage the horrific battle of akathisia, daily. The emotional pain, the quivering muscles, the feelings of agitation and panic hovering inside me with nothing concrete on which to place them. And along with the persisting akathisia, I have developed other neurological movement disorders, and they appeared nearly 7 months after discontinuing Latuda: tardive dyskinesia and tardive dystonia.

What makes me rather unique is that for some people, the drug masks “inner akathisia,” the emotional pain, while the patient is on it. Not always, but sometimes. For example, akathisia can also be a withdrawal symptom. Just ask anyone who has tried to get off benzodiazepines. But Latuda did not mask my pain, and it grew, over years, until I was frozen with pain almost every day. I have lived with inner akathisia pain, for over a decade, and not one medical professional knew what was wrong with me. They blamed it on a psychiatric illness I did not have. I have been SSRI-free for years. The only medication I took with akathisia as a known side effect was the AAP, Latuda. And here’s a fun fact — 30% of people who take AAPs develop akathisia. One in three. One in three people. And more people are getting prescribed these medications than ever in history, right now. Another fun fact: the movement disorders caused by AAPs? They do not go away. Not ever. So that is my life, now.

But I don’t know that “living” is the correct word to describe what my life had — and most days still are — like. More accurately, I white-knuckle my way through every day days. Once or twice a month, I might get a small reprieve. There is no rhyme or reason. Just…a day when perhaps whatever grace exists knows that I need a break, however small, before *I* break for good.

Before my diagnosis last summer in 2016, I lived with a pain with no name, a pain so relentless, there were days when I could barely walk upright. It was misdiagnosed as “agitated depression,” “treatment-resistant depression,” and “severe panic and anxiety,” but no medication gave me relief.

I knew, knew in my BONES, that it wasn’t psychological. This was not a job for my therapist. No, this was physical, biological, and my doctor and I knew it had to do with medication. But he had no idea what “inner akathisia” was. I not only wanted that train to derail, I almost derailed it myself, more times than I care to admit here.

Akathisia dogs my every step; places a pall over every feeling and thought I have, every day. My mind can’t wrap itself around the pain at times — a pain like akathisia should be fatal. At the very least, it should have the compassion to be fatal and allow the sufferer to die a death that is not self-imposed. It is hell on earth, and it has nothing at all to do with gods or devils.

I get whacked, despite the drug’s absence, and no one knows why it persists, other than I was on AAPs for 13 years, and no one knows how to help me. Am I now, then, finally humbled?

Hell no. I’m pissed.

And as a wise man once wrote…well as the guy who made the magnet on my refrigerator wrote: “It is unwise to anger a poet.” Oh, it’s a little different than that. I’ll fix it.

There. All fixed.

When a blogger from the UK, Bob Fiddaman, invited me to write about my experience, I had to laugh a little. Write about it? Hell, I’ve been writing about it for years. Years and years — as in, I have so many poems and stories about the mysterious “Pain” that haunted my daily existence, that I have an entire BOOK of writings about akathisia, a book I’m compiling as we speak. So yes, I’ve written about it, and this is the intro.

If you’d like a broader spectrum/look-see into the history of antipsychotic medications, and the evolution of the drug companies with regards to mental health, as well as my personal take on it and my experiences that led me to this point, please visit my webpage at:

https://www.jacarterwinward.com/akathisia

If you’ve read my poem, or seen my YouTube film, “How Bad Can Good Be?”, I hope that you not only found it engaging, but that you will all help me spread the film’s message like a wildfire across the info-kindling that is the ether.

Thank you for reading. It’s time for me to step away. The Pain — it’s here. So familiar, and yet it feels fresh and new, every day. Like a wound that is never allowed to heal. A torture, where every day a masked man comes and gouges out the same place on my body. I’d beg him, beg him, to please, give me another pain, in ANY other place.

I often think about that. I think about him, agreeing, but giving me this choice:

“All right, instead of gutting you in the bloody hole in the upper part of your stomach, I will slash your arms and legs to shreds. But here’s the catch: I will only do that if you let me slash your limbs for a decade. If you refuse, I will continue gutting the usual spot, but only for one more week. Choose.”

Truth be told? I don’t know what I would do. I think I would choose the decade of limbs being slashed. If it meant my gut would be spared one more blow? God help me, I’d consign to the former. The pain…I can’t describe in words. I am undone by it; but I have work to do, and I need to help those who I can help. I need to keep holding on, and I will.

So yes, I’m sinking, here and now, down to my knees…

…but so help me God, I will not allow my chin to drop —

— not until the makers of Latuda KNOW ME BY NAME.

~J.A. Carter-Winward

www.akathisia.life