I Can Barely Breathe: The Journey Continues

My first MIA personal story, “I Can Barely Breathe,” was published on 1/13/23, thirteen days on the wagon from four decades of psychiatric cocktail polydrugging of antidepressants, antipsychotics, mood stabilizers, stimulants, benzos and sleep aids. Not to mention the statins, thyroid meds, gabapentin, steroids, NSAIDS, PPIs and blood pressure meds for the psych drug side effects along the way.

As of today I have been pharma-free for not quite three years now and currently I live with a very flexible definition of “breathing.”

For eighteen months, akathisia came in a relentless wave along with nausea, insomnia, dystonia, myoclonic jerks, dyskinesia, headaches, visual disturbances… you know, symptoms of an acquired brain injury from long-term sequelae (outcomes) of electroconvulsive therapy, psychiatric drug therapy and the sudden absence of the daily mind-altering medications I’d been coerced and occasionally physically forced to take for four decades.

I guess I could say things are better now, that I have windows, good days, along with the bad. But it isn’t that some days are good and some are bad. It’s more like some days I can accept the bad and some days I simply cannot tolerate this hell at all.

On the intolerable days, I reflect on my past. I can clearly see now that as a child, I was an honest, brave, vibrant, sharp-witted, empathetic, bully-ballbuster! But as happens to all human beings, as I traveled life’s journey I was assaulted by events outside of my control.

My biological father was never in the picture. I had stepfathers in and out of my life, there was a lot of yelling and slapping and as most children do, I blamed it all on myself. At age four, I fell down some steps, split my head open and knocked myself out. Other than stitches, I was never treated for the concussion. Previously top of my Montessori preschool class, after the head injury I began struggling in school with concentration and focus. I was almost held back in the second grade but with the help of my grandmother and great-grandmother I was able to recover. By 5th grade I was making As and Bs. But the last stepfather was very strict and cold and forbid my mother and I from expressing any emotions. Even too much happiness was not appreciated. By my junior year in high school, my social life had waned and my grades had dropped once again.

When my mother saw I was struggling, she took me to meet with a psychiatrist. He didn’t put me on drugs right away, it was almost as if he lured me onto drugs. First, he sent me home, guessing I had PMS, and said I needed to have therapy with my parents with his social worker. I perceived that as very threatening and feared that if I said anything in those family meetings, my stepfather would punish me later at home. I felt so threatened by the prospect that I swallowed a bottle of Tylenol the next day. When the psychiatrist found out he promptly had me locked up, gave me a mind-altering drug (Melaril, a first generation neuroleptic) that he said was for my tummy aches, then when my mind was definitely altered by the very powerful drug he told me I was crazy.

And oh my, YES, it made me crazy! My behavior sure looked crazy! I started doing things I had never, ever done before. I began cutting myself, drawing pictures with a broken mirror on my arms, legs and even my face. I threw a chair at my mom when she came to visit. I threatened my fellow teenage patients. Internally I felt crazy too! Many, many foreign thoughts came into my head that had not been there before. Suddenly, I was having non-stop violent, bloody, suicidal ideation, and I got this idea in my head that I was a serial killer! Every time I would misbehave, the psychiatrist had me tied up and injected me with more drugs, shocked electricity through my head until finally, finally I became the perfect mental patient: dependent (emotionally and financially), doubtful of my own body and brain, and numbed into docility. I used to complain, “I have zero accomplishments, zero attributes, but everyone says I am so sweet.”

Every feeble but sincere attempt I made to change that narrative was always thwarted by some sudden, unexplained idiopathic health crisis—which happened to perfectly match with a dose change or a medication addition or subtraction after I was passed on to the next psychiatric resident I got each year at the county teaching clinic. There was always a steady supply of new pharmaceuticals being marketed to them.

I fell for the degrading names they called me: schizo-affective, psychotic, delusional, severely depressed, manic, anxious, chronic, TREATMENT RESISTANT! I took their DSM labels and thanked them for it, as if I’d graduated summa cum laude from the university of the hopelessly insane! Mission Accomplished! This went on for 38 YEARS! My youth spent in and out of mental wards. And when I was not in the hospital, I was going to other MD specialists for a host of other health problems. None of whom, by the way, bothered to mention to me that my physical symptoms were side effects from the long medication list I was required to write on my medical history intake forms!

I did manage to go to college eventually, part-time, and I did get a degree. But afterward, couldn’t hold even a part-time job for long.

In my thirties, while doing a diagnostic gastro intestinal test for yet another idiopathic condition (wink wink caused by the psych pharmaceuticals wink wink), my GI doctor saw a large growth on my ovary and advised me to have a gynecologist check it. I mentioned this to my psychotherapist in my weekly session. She gave me the phone number of her gynecologist and I made an appointment. As I later sat with the gyno, she informed me that she was pretty sure it was just a benign cyst, but nevertheless she and my therapist decided to remove my ovary since I did not want children anyway. Mind you, I had not given my therapist permission to talk to ANYONE about ANYTHING, nor had I discussed not wanting children with either of them! BUT, as the treatment-compliant mental patient I had been conditioned to be, I went along with it and I now have one ovary missing and zero children.

Yes, my life was in fact wasted and ruined. I languished, all those decades in the mental health system. I was made into a drug-dependent zombie. I was treated like and felt like a sub-human.

However, I will not wallow in shame or self-pity for I was a child when I was thrust onto that path. I was stunted and kept a child. I was forced onto mind-altering substances with zero knowledge that that’s what was happening. I agree—I was “mentally ill”! Crazy, insane, out of my mind. But how could I not be “mentally ill” and hopelessly disabled?!? THEY DRUGGED ME! Restraints, injections, locked seclusion and all. I was only violent two times (when I was a child!) and never caused any physical or property damage. But for every firm verbal NO THANK YOU to the pills that were crippling and torturing my body and brain, I would be given a choice between swallowing and being held down and injected.

At 55 years old, after yet another medication adverse reaction followed by a cold-turkey withdrawal sending me into the throes of akathisia YET AGAIN, the veil finally began to lift and I went down the rabbit hole into Wonderland.

My initial response was to do what I’ve always done—reach out to the experts. So I did. But they treated me like their toy yo-yo, yanking me to and from each other. My PCP rushed me to neurology, neurology saw my med profile and quickly referred me back to psychiatry, and psychiatry was happy to prescribe more numbing drugs, but when those didn’t calm me or stop the involuntary movements, psychiatry said neurology might be able to help because they’d never ever seen akathisia before—it’s so rare, they said! So I tried functional medicine, realizing I might have been better off if I’d gone there before I’d ever seen an allopathic doctor. But they couldn’t do much at this point, for such pharma damage.

I finally metaphorically ESCAPED the mind games of the entire hell[th] system.

I began a three-year saga of connecting dots, piecing events together of what happened to me all those years, under the care of “expert medical professionals.”

I have recently come to the working theory that I am a full-fledged human being who definitely knows who she is NOT! And I know who I am, too—an ever-changing, ever-learning, growing, DYNAMIC mama bear human female being with plenty to offer the world. Certainly NOT chronically, severely “mentally ill,” needing a life sentence of drug management by men and women dressed up in doctor costumes until they eventually kill me!

I am writing this sequel today because I’ve come to a decision. I’m angry! I am terrified! I am incredibly saddened!! I am definitely NOT OK. I probably never will be. And I can’t go back in time. But all that is acceptable. I am acceptable. In fact, I am awesome. Maybe I am crazy. But no more, no less than any other human being here.

I want more for myself than just being a sweet, docile, compliant mental patient. I want a voice and a seat at the table.

And no, I don’t need to forgive in order to find peace! I don’t need to “move on with my life”!

I don’t feel hope that I’ll eventually heal from the brain damage so my fear and sadness will be quelled. I don’t need a haven where I will have everlasting joy. I still don’t know exactly what it will look like, but I know that I need and have hope that I’ll find MEANING and PURPOSE!

I think I might find that by doing my part to stop the madness. The madness that the mental health industry, Big Medicine, Big Pharma and Big Government are inflicting on humanity. This righteous anger I feel is my fuel, not my disease!

Watch out, world! Here this mental patient comes, and I hope all of you come right along beside me!