Editorial Note: This is the second in Krista Hartmann’s 4 parter on changing her medical records. See part 1, Unicorn.
“What the mind doesn’t understand, it worships or fears”. Alice Walker
When I encountered the psychiatric industry in 2004, I was a 53- year-old, sun-surf-beach chasing artist with a solid education and middle-class origins. I was a single, unconventional, iconoclastic female. I moved freely through the world with the notion that “Life is a daring adventure or nothing at all” Helen Keller.
If I had been male, I would have been characterized as a “rugged individualist, walking to his own drumbeat, following his dreams, choosing the path less taken, adventurous, dynamic, the most interesting man in the world”. The sexist dichotomy in American culture celebrates uniqueness and daring in men and finds it unattractive (gasp) and threatening in women. In psychiatry I learned that if your female, “follow your dreams, dream big” wasn’t bold, it was ‘grandiose thoughts’.
I had a restless mind and was eager for new learning experiences….and on to the next. I had been a National Billiard Champion in college, a club and restaurant manager, a croupier in the cruise industry bouncing from beach to fabulous beach in the Caribbean, a line cook ala’ “Top Chef”, a photographer, a visual merchandiser for national corporations, and interior designer. I had a showroom to-the-trade in Atlanta and was a ‘makeover’, start-up consultant, and buyer for retail businesses.
I was comfortable with myself and life was getting better all the time. At 43, in 1994, I designed and built a house at the beach, living the good life with an abundance of pets and my spectacular garden. My creativity was unstoppable and stronger with each year. It was washing over me, paying the bills (bonus!) and it was bliss.
I developed into a Caribbean folk-art painter with an agent, a van, and exhibiting in the most prestigious shows in the southeast, carried by galleries in the U.S. and Caribbean. This was what I was supposed to be doing, with people who were just like me; creative and different.
After a few hectic but thrilling years, I had to shut it down in 2004; a small business failure like thousands of others. It was a difficult personal disappointment, but I sucked it up and got another ‘real’ job.
I was teetering financially but had not fallen behind…yet. I wasn’t sleeping well and my mother chose that time to tell me what a disappointment I was to her. As my mother’s affection and approval vacillated almost daily, this wasn’t news, but her timing was poor. And my 16-year-old hound dog Stella, had died. I was shattered.
It was 2004, and armed with my new insurance, a psychiatrist seemed like the answer to get some assistance sleeping and a little emotional tune-up. Twenty minutes into the appointment, I was diagnosed as bipolar 1 and dosed with Seroquel, followed by my first Neuroleptic Malignant Syndrome reaction. Wait, what….?
After regaining movement 8 hours later and terrified, I was told it was “no big deal, just a little side effect, we’ll adjust the dosage, everybody experiences this, you’ll be fine…nothing to worry about”.
“This response was a SYMPTOM of your acute illness and proves that you’re in extremely serious danger of self-harm, you’re very sick, we caught you just in time; if you do everything we say, together we can save your life…as long as you never leave us”.
Suicide was anathema to me; now these experts couldn’t stop talking about it. What was I missing?
I am now aware of this intentional, predatory, grooming behavior. It was a stunning and impressively choreographed synchronicity of agenda, proselytizing and recruitment; the definition of a cult. I was emotionally vulnerable, drugged and terrorized; a soft target for what was to follow.
My diagnosing doctor had checked all the boxes in the People magazine bipolar quiz that were ubiquitous in 2004 (and still are). Although I don’t have evidence of her complicity at that time, when the federal ACA “Sunshine Law” mandated reporting in 2013, she was banking $65,000 a year from pharma (“Dollars for Docs”, ProPublica.org), primarily Astra Zeneca, makers of Seroquel, her medical response to my presentation of financial stress and severe insomnia; chemo for a cold. No temazepam and CBT for me; no start low, go slow and the occasional diazepam.
The cascade of side effects ‘symptoms’ was crippling. They efficiently reshuffled my emotions, my perspective, and self-confidence. I was terrified and ashamed of my ‘failures’. My knee was being permanently bent.
My inability to function led to the loss of my beloved 11-year-old home, selling all my possessions, and bankruptcy…’couch surfing’ at 55 years old. My diagnosing doctor and ‘therapist’ coolly looked on, congratulating me on my med compliancy. As I left my town of 25 years to crash at a friend’s 300 miles away, they wished me well, reminding me to stay on my meds. It all happened so fast, I couldn’t catch my breath. Why was I the only one alarmed?
I waited for that promised flood of acuity, like a ‘green flash’ sunrise, where all would be revealed in sharp relief and chemically delivered contentment would grace me…if I was compliant; otherwise I would surely die…by my own hand.
It was like waiting for Santa at an abusive relative’s house.
How did this happen to me? I couldn’t face the answer; I had agreed to it. It was my fault. I deserved the drugged ‘netherworld’ existence I was stumbling through. It was all gone and all I wanted was it all back.
“The problem with psychiatric diagnoses is not that they are meaningless, but that they may be, and often are, serving as semantic blackjacks; cracking the subject’s dignity and respectability destroys him just as effectively as cracking his skull”. Thomas Szasz (1961)
My isolation was complete; I used to be an expressive, creative pirate, swashbuckling thru life. She was dead; her epithet was rapid speech, grandiose thoughts, irresponsible with money; manic; changed jobs frequently, business failures, disruptive relationships, DTS; depressive.
The ensuing 9 years of perpetual shock was an envelope of white noise, with the regular plunges off a cliff when a new drug was given or and old one went sour. I was universally viewed as a ‘drama-queen’ as my responses to the drugs were always painfully adverse, as if I would choose that. I was baffled as my side effects were not just interior, they were physically manifested. I didn’t trust the world or myself anymore. I kept my head down, in and out of ER’s with the drug damages (have an Ativan!), never behavioral issues, watching my health deteriorate and stared at my shuffling feet. I was pronounced ‘disabled’ and SMI by a marriage counselor following a week in hospital, caused by 13 med changes in 9 months, Geodon with 4 other drugs on board delivering the final blow (that time); bradycardia, severe akathisia, malnutrition (anorexia), and…anxiety. No sh*t.
I attended ‘groups’ faithfully, desperately seeking, but never finding someone like me. There were side effects galore and people very troubled by their quality of care, but no one was being physically crushed as regularly as I seemed to be. This is in NO WAY diminishing other’s suffering; there was an abundance of it. It’s not a contest.
I had lost my private insurance and was swallowed by the Medicaid/Medicare model, awash with GED-educated case managers one step away from their Taco Bell ‘experience’ and a heavy rotation of unqualified PA’s and MA’s padding their resume’s with ‘social service’ work before quickly moving on. The damage in their wake was incidental; I rarely saw a prescriber more than once or twice. As this was health care for my brain, it was criminal.
By 2013, I hadn’t seen a doctor in 7 years with the state; not for an assessment or for treatment. Considering that the first falling domino in this sh*t-show started with a private psychiatrist, I was ambivalent.
DESPITE THE DRUGS, from 2006-2013 I had slowly rebuilt a life by volunteering and subsequently offered a position on the management team of a prosperous non-profit that would last for 7 years; running systems, serving as the first contact with the public, and developing successful programs. It gave me a sense of purpose in a meaningless life. I paid off a modest condo and new, more modest car with a small inheritance, all approved by Medicaid/Medicare as I was still in a ‘poverty’ category, with ‘permission’ to work. I lived alone, had pets, was debt-free and had a few friends. I told them about the diagnosis and drugs so they would not be alarmed at my physical state. Outwardly, I was a ‘model citizen’, hitting high marks on the scale that all people are judged by. I continued to plod along, afraid of somehow causing it to fall apart again.
I used to embrace adventure, now I cringed at the smallest irregularity. I would not paint again or engage in sex for 12 years. My weight was over 200 lbs.; at diagnosis had been 138. I didn’t know the woman in the mirror, but I hated her.
I remained SMI. The clinic ignored the facts of my life. In my western state, the following defined an SMI designation:
- “Inability to live in an independent or family setting without supervision-neglect or disruption of ability to attend to basic needs…housing, food, and clothing must be provided by others…unable to attend to basic needs of hygiene, grooming, nutrition, medical and dental”.
- “DTS/DTO, seriously disruptive to community…regularly engages in assaultive behavior…has been arrested, incarcerated, hospitalized…because of dangerous behavior…severe disruption of daily life due to frequent thoughts of death, suicide, or self-harm…”
- “Frequently in trouble at work…unable to work…or meet appropriate responsibilities”.
- “Co-morbidities…like mental retardation, substance dependence…Chronic factors such as social isolation…poverty”
Who were they talking about?
The state’s behavioral management contractor was getting additional state and federal funding for my SMI designation. I was a steady revenue stream, a number in a column on a spread sheet, a job creator.
In 2015, on my way out of the industry, I enlisted a receptive supervisor to help unearth my 2006 SMI certification. It took weeks and when she called back, she was awkward, coughing into the phone, pausing; I waited…and then she said “I‘ve looked over your paperwork and…..pause….I just want you to know….throat clear.…We don’t do things like this anymore”.
Sweet Baby Jesus.
I had been bought and sold, passed around the industry from coast to coast. Regardless of how it felt, what I had lost, and the damage I suffered; this wasn’t personal, it was business.