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THE BIPOLAR CAGE Part 4: MY Life After ECT Treatment

Electric lobotomy

My emotional connection to all I loved, my hobbies, friends, and family, was severed, leaving me with hellish numbness. An imaging study in 2012 may explain why: ECT reduces connectivity with frontal lobe regions of the brain. Essentially, I was electrically lobotomized. The researchers construe this as a good thing.

Unbelieved

the true horror of my injuries was that no one could see them. No one believed my brain was damaged from ECT. I kept trying to get help from my doctors. They’d get frustrated and tell me, “ECT doesn’t do that,” and that I “sounded fine.” I thought I was going crazy. I was totally isolated in my experience. I still had multiple hellish tapers to survive, so finding solutions to my brain damage would have to wait until my health was stable.

THE Torture OF WITHDRAWAL

A scene in the movie 7 Years in Tibet reminds me of what being trapped in a taper feels like. Austrian mountaineer Heinrich Harrer, played by Brad Pitt, is incarcerated in a Himalayan prisoner-of-war camp. At one point, being held captive caused him to snap. Screaming, he threw himself against the barbed wire fence over and over again.

Trapped in life-or-death dependence on drugs created a similar feeling. It was hell willingly taking pills that caused pain and starvation while reducing the dose caused withdrawals… If I had a barbed wire fence to throw myself against screaming, I would have. 

My first steps away from medications

After several med-change nightmares, ECT going horribly wrong, and a year of chronic starvation and crippling pain, I decided to continue tapering without adding new medications.

It was terrifying, waiting for my sanity to dissolve into bipolar madness after I finished my last dose of psych meds.

This resurgence of mental illness never happened.

AFTER THE TAPERS

A little over a year later, I had weaned myself off all psychiatric medications and narcotics. I eagerly waited to feel human again after my final dose. It never happened. Even off drugs, I never felt normal, whatever that was. It’s hard to say what is normal after growing up on these drugs. It was so long ago I no longer remember life without them.

Can there ever be normal after a drugged childhood like mine? This recent paper about benzodiazepines says no.

There are days when I have tremors, and my skin crawls. The fear, the surging burning sensations in my nervous system… my body will never forget the chemical torture I quietly endured for over a decade. 

I say quietly because protesting would only reinforce to others how crazy I was. Each time I talked to a mental health professional, I got a new diagnosis and was believed less and less. I learned to suppress any behavior that might be seen as a mental illness out of self-preservation.

APPEARANCES ARE ALL THE MATTERS 

After over a decade of polypharmacy and brain damage from ECT, I didn’t have a soul in my corner. I had been working on restoring my health, so outwardly, I looked better, but inside I was dying. Every aspect of my life had been destroyed, yet everyone told me I looked great and wouldn’t hear anything to the contrary. Brain damage made it hard to trust my own perception. People telling me my brain damage couldn’t possibly exist made me feel utterly insane.

Psychiatric drugs, their side effects, and the systemic abuse I endured since childhood stripped me of anything that made me relatable to others. These unwanted changes to my humanity ensured I would stay isolated… unless I was willing to face the humiliation of re-entering society with no life skills, severe protracted drug withdrawal, untreated brain damage, and cPTSD.

Hiding my past

I was broken in every way possible, with little hope for any sort of life. During this time, I spent nearly every minute of every day wanting to die— wishing I’d died on the shock table, wishing I would die in my sleep–- if I could actually sleep.

I learned it was best to keep the cause of my brain damage a secret. If I tried to tell anyone, they would assure me ECT couldn’t have caused brain damage because they had read an article that quoted a doctor who said it’s safe now. Or they’ll say ECT saved someone’s life and I shouldn’t ruin it for others, so end of the conversation– as though one person’s benefit erased my injuries and need for recognition and treatment.

To the rest of the world, I was just a rare, tragic statistic. I couldn’t tell anyone what had happened to me because most people were so captivated by the “new ECT” narrative they would never believe me.

I was too behind in life, sick, tired, and broken. So desperate to feel better, I forced myself to believe my doctors were right and did my best to play along with their perception of reality in hopes I might feel better. I tried to convince myself my cognitive problems were my mental illness, as my doctors said. Denying my own reality destroyed what was left of me not already warped by abuse, drugs, and brain damage. 

It wasn’t long after stopping all psychiatric meds before doctors urged me to take new ones. I resisted, instead faithfully showing up for appointments like a criminal on parole to prove to them I was not a danger to myself “unmedicated.”

There was little choice now that I was an unmedicated bipolar patient. Brain damage impacted my thoughts and behaviors and put me at greater risk of involuntary treatment. I couldn’t risk incarceration, forced drugging, and ECT. To survive, I had to play along with their game until I could figure out what was really wrong with me. From there, I could find a way to recover. 

This sent me on five years of intense research and revolving doors with countless doctors to fix all the damage caused by iatrogenic injury. 

ECT victims multiplied

My family fell into the trap many do after being disabled by ECT, without diagnosis and treatment, personality changes, and dependency, which often strain and fracture relationships.

“…when people are disabled by ECT’s effects, the cost is always multiplied by more than one: teachers no longer teach, nurses no longer nurse, families become strangers and break up.”

Linda Andre, Doctors of Deception, What They Don’t Want You to Know About Shock Treatment

THE TURNAROUND

Spiritual abuse 

When drugs and electroshock completely destroyed my life, my doctors, who were devout Christians, had yet another remedy for me: their flavor of religion. In retrospect, this was a wildly inappropriate imposition on a vulnerable person in my position; I had shown signs of scrupulosity from the religion I was raised in. I depended on them for medication and social services. They had the power to influence what others thought about me and the ability to take my freedom away if they felt the need, as they had done in my teens.

After hearing abusive and dangerous claims made from the pulpit about mental health issues I had lived through, I had enough. I left organized religion. In the end, it had become like the mental health system– yet another abuser I had to escape from to heal.

Inspired by Neuroplasticity

Reading Sharon Begley’s book “Change Your Mind Change Your Brain” was a turning point for me. It taught me about neuroplasticity, which is the brain’s ability to recover from damage. Before reading the book, I thought brain damage was permanent, but it showed me that there is hope for recovery. There was an alternate reality if I was willing to pursue it. This kicked off a decade of research into the brain, ECT, and “do-it-yourself” rehabilitation.

ECT

Gaslighting had taken its toll. For years, I was too scared to pull that thread because I was still dependent on the man managing my meds.

Institutionalized Child abuse

Few can comprehend how badly some children are treated “for their own good.” As the troubled teen industry shows us, nothing is off the table. Teachers and therapists can use any strategy, even if it’s abusive or coercive. Laws are not on the side of children.

Once you’re marked as a “troubled child,” No tactic is off limits to teachers and therapists with good intentions.

Over a decade of drugging and relentless compliance training stripped me of healthy, self-preserving boundaries. Withholding warmth, ignoring, and shaming me into doing things that damaged my mind and body for approval. This became the only kind of human interaction I knew.

Turing 18 didn’t magically create self-protection skills after years of abuse. By my twenties, I didn’t know how to consider my own comfort or safety. How would I, after obediently choking down pills that were killing me slowly for over a decade? Or accepting abuse with a smile and a thank you?

Carrots and Sticks 

As a child who grew up enmeshed in the mental health system, I learned that the only way to be treated like a human is to do what adults wanted me to do. I resisted them until I became too sick. By then, I was so beaten down by the abuse, drug side effects, and chronic illness I began to suppress every self-preserving instinct for scraps of kindness earned through obedience.

That’s how it goes–you take your meds regardless of how much hair you lose, how fat you become, how sick they make you, and how many years they steal from your life. You play along with whatever abuse they dish out. You put on a show for that reward, knowing the punishment is much worse.

A lifetime spent in dissociation-land

Dissociating was the only way I could cope till I got past this new symptom/drug side effect/surgery. Months turn to years, and years turn to decades, waiting for my own body and mind to become bearable enough to exist in fully. I’m still waiting.

Scared to question ECT

I was scared to research ECT. It meant defying the mental health system I was enmeshed in–actions that rarely end well for someone like me.

I was also scared because it meant the unthinkable. The kind men who managed my mental health care from a young age were dangerously wrong about everything: my condition, medications, and electroshock.  

They’d seen me tortured by drug side effects for over a decade and never once questioned whether this path was right for me. Their minds were closed to reconsidering their original assessment.

They were so sure they were right; there was nothing I could do to convince them ECT damaged my brain. All they saw was an attention-hungry, personality-disordered, hysterical, malingering bipolar woman.

Isolation

I was on my own, in and out of the mental health system. I had no social support when I was undergoing psychiatric treatment in the 90s, when mental illness was more stigmatized.

Years of direct-to-consumer ads would shift mainstream societal beliefs about mental illness to be more pro-treatment, without most people really understanding these diagnoses and their treatment’s risks and efficacy or the abuses certain groups face. Openly questioning your mental diagnosis in this environment made you dangerous in their eyes–even more so unmedicated.

A Glimmer of hope

At first, I struggled to find experiences like mine or articles critical of ECT. The internet was saturated with pro-ECT content. Studies and most articles repeated the same public relations (PR) lines parroted by my doctors:

“ECT doesn’t cause brain damage.”

“New and improved.”

“It’s life-saving.”

“Only Scientologists and ignorant people have anything bad to say about it.”

Unmasking ECT

I eventually found the “ECT as a Head Injury” presentation by Linda Andre, which perfectly described my experiences after shock treatment. Linda showed me my struggles were common among those who have shock treatment, and examples of peers who came up with their own rehab strategies showed me that regaining lost skills was possible.

Physical recovery

It took five years of revolving door appointments and two surgeries to stabilize my health enough so that I could start rebuilding my life.

Back to school

When I was well enough, I focused on earning my high school diploma (GED). With my impairments, I knew I’d need special accommodations. This opened the door to cognitive testing.

My deficits were jaw-droppingly bad, but as usual, my doctors explained them away; the possibility ECT caused them never crossed their minds. By then, I had enough information to know they were wrong. I no longer cared if they believed me— once I secured rehabilitation, I could cut ties with the men who sent me down this hellish path as a child.

REHABILITATION 

I did two years of speech and occupational therapy with limited success because I wasn’t being treated using electrical injury billing codes. My rehab team helped me write for the first time (one of my pre-ECT disabilities) and taught me skills to work around my disabilities. This gave me some normalcy. After several years, I earned my GED with honors and later began college.

Neural fatigue

While I could adapt and score well in college, the fatigue never improved. I could only handle a few credits per semester. 

In speech therapy, I learned several strategies we hoped would allow me to increase my course load overtime–- at the time, all I could manage was a few classes per semester. That theory didn’t pan out; after a few years, it became clear that neural fatigue was insurmountable. I had to take medical leave from school.

I tried to work for a few years, but like school, I was too disabled to hold down a traditional job.

CHASING BRAIN DAMAGE DIAGNOSES

Before college, I sought help from a neurologist. I had more testing that led to a diagnosis of chronic encephalopathy, like what football players get (CTE) minus the word “trauma.”

My neurologist didn’t believe ECT was the cause, but he also couldn’t explain away the severity of my symptoms. He monitored me annually in case what I was dealing with was progressive. Eventually, I was referred to a dementia specialist. 

This specialist refused to consider ECT caused these deficits. I was denied further testing or rehabilitation referrals. I should add this doctor worked at the same hospital that gave me ECT. 

MOVING ON

I was so traumatized from being gaslit. With no solid leads on tests or treatment, I decided to move on with my life. So many things weren’t working out, but that was ok. I would focus on ways to make the most of my future. Later, I would learn ECT stole that too.

A canary in the coal mine

I met my friend Sarah several years back through patient safety activism. Occasionally, I’d see her Facebook posts crop up in my newsfeed. One day, I saw a picture of her using a walker. Sometime later, a picture of her smiling up from a wheelchair at the beach. 

As I got to know her more, I learned about the frightening consequences of electrical injury that were causing her health to unravel in terrifying ways. I was horrified that ECT caused this decline, but I assumed cases like hers were rare. I didn’t have nearly as many treatments as she did, or so I thought.

I initially thought I had 30 or 40 shock treatments. After running numbers based on my medical notes, I learned the number range is closer to 60 – 90 ECT treatments.

My decline

Fast forward several years, I started having dangerous reactions to my environment, likely due to impaired ion channel function from ECT.

Life in a bubble

When I was young, I saw The Boy in the Plastic Bubble, a movie based on the real-life of David Vetter, a boy born with severe combined immunodeficiency (SCID). He survived this condition by being kept in special NASA-designed chambers sealed off from the world. As a child, I couldn’t imagine what it would be like to live confined to plastic containers, never able to go outside. Decades later, I would learn, as an adult, how scary the world can be with a compromised immune system and a damaged blood-brain barrier. 

I now have excruciatingly painful reactions to the slightest exposure to common chemicals and allergens. If the reactions are severe enough, I get confused, collapse, and stop breathing. After ECT, allergy medications are nearly as dangerous to me because they act on voltage-gated ion channels. Now, life-saving allergy medications give me tetany seizures, ataxia, aphasia, and heart issues. 

I’m now mostly confined indoors, surrounded by an army of powerful air filters to protect my nervous system from anything I don’t want sneaking past my damaged blood-brain barrier— another known side effect of ECT. The smallest exposure can cause seizures, dystonias, aphasia, falling, and breathing problems.

I only leave home for mandatory doctor appointments. When I do, I need to wear a mask to protect myself from pollution and bring my screen reader in case the exposure makes me lose the ability to speak. 

In addition to damaging the blood-brain barrier and ion channel function, there’s growing evidence that ECT alters the immune system. As with most ECT research, doctors declare this change as good.

Mental decline

My cognition rapidly declined to the same level I was after my last shock treatment. I once again depend on help from family with everyday tasks. I have spent the last two years relearning how to write, cook, and manage housework.

As my friend’s injuries evolve, I wonder if my ECT treatment variables will have similar long-term effects, like being unable to speak or walk. Or, I may face entirely different consequences, like this Australian woman who died of progressive supranuclear palsy (PSP) or other strange illnesses or deaths we hear about in our community.

The figure above visually represents treatment variables based on electrode placement and method. These are a small part of the ECT treatment variables that exist, including age, gender, dosing, medications used for treatment, medications in the recipients’ system, etc. Protocol: Comparative efficacy, cognitive effects and acceptability of electroconvulsive therapies for the treatment of depression: protocol for a systematic review and network meta-analysis – PMC (nih.gov)

The future I worked so hard for is gone

For over a decade, I worked relentlessly every day to rehabilitate myself for a chance to do all the things I missed out on growing up and to enjoy the remaining years of my life. In a few years, all that work has been decimated, and I’m back where I started, only weaker and less mentally able than before my decline.

I WAS NEVER BIPOLAR

Eventually, I dismantled my bipolar diagnosis. I discovered several of my learning disabilities were already documented, and treatment for them was recommended. That never happened after being labeled bipolar; treating my “mental disease” became the priority. The consequences of bipolar management took priority over treating one of the real causes of my distress.

I’ll never forget my doctor’s reactions to my discoveries. One said, “So that’s why medications never worked for you.” Just like that, he did a mental shoulder shrug at the decades of suffering I endured and the life I lost to their misdiagnoses. 

My other doctor told me, “We try and address these issues early on before the child’s self-esteem is wrecked!” A little late, in my case. Their reactions showed they had little awarness of their errors and felt no responsibility for misdiagnosing me or the suffering their flawed judgment caused. 

THE Cost OF A LIFE IN A CAGE

My bipolar diagnosis, what people believed about it and, in turn, believed about me, and medications created a physical, social, and mental cage. I spent nearly two decades locked behind these bars. 

From my bipolar cage, I watched other kids my age have fun, make mistakes, live their lives, and grow up. Meanwhile, my every thought, action, and utterance was policed, and I was rewarded or punished accordingly. 

My incarceration reminds me of two captive lions who were rescued & relocated to a sanctuary in South Africa. Tanya and Tarzan spent their entire lives together in small cages, enduring years of abuse and unimaginable suffering. 

Seeing their demeanor change as their paws touch grass for the first time is moving. Once held prisoner for human entertainment, they’re finally free to live the rest of their days as lions. 

These once-tortured animals regain health through proper care, but their rescue is bittersweet. Although they are now free, nothing will ever erase the scars from a lifetime spent locked in a cage.

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