Shocked by “Fortnight” video: An open letter to Taylor Swift about stigmatizing shock therapy
A personal reaction to the trivialized portrayal of Electoconvulsive Therapy (ECT)
TRIGGER WARNING: This open letter discusses Electroconvulsive Therapy (ECT aka “shock treatment”) and suicide. It may be triggering to some.
SUMMARY
* Taylor Swift’s new “Fortnight” video timely for Mental Health Awareness Month
* Utahn shares personal experience with Electroconvulsive therapy’s risk of “permanent memory loss or permanent brain damage” — ECT device manufacturer identified serious adverse event.
* What you can do to support people with a history of Electroconvulsive therapy
Taylor Swift’s new “Fortnight” music video timely for Mental Health Awareness Month
I had Electroconvulsive therapy (ECT) “more than a fortnight” ago. It has been 130 fortnights to be exact. I’m still in recovery. I’m a shock survivor living in Utah. A state where more than 1 in 5 adult Utahns have mental health issues and suicide rates have climbed by 12 percent in recent years. I live in a state where nearly half of Utah’s youth and adults do not receive necessary services or treatment. During Mental Health Awareness Month, I want to shine a light on a treatment identified as “safe and effective” for nearly a century: Electroconvulsive Therapy (ECT).
As the late esteemed Pulitzer Prize-winning novelist, Nobel Laureate and journalist Ernest Hemingway once penned before dying by suicide after several unsuccessful rounds of ECT, “It was a brilliant cure, but we lost the patient.”
As a self-proclaimed Millennial Swifty-convert, I embraced her sugary pop riffs. They made my heart melt like cotton candy in rain after the heartache of losing my identify and former life. This occurred as a consequence of nearly 50 shock treatments — an unsuccessful attempt to cure suicidal depression.
Like every loyal Swifty, I scheduled time to immerse myself in her recently released double-album, The Tortured Poet’s Department. Then I watched her latest music video “Fortnight.” There are several lyrics on the album that allude to behavioral hospitals and being locked away for safety. I’m curious if the insights and empathy detailed in her latest dark, somber songs were developed through lived-experience or absorbed from associations with people met along the way. I may never know. But what I do know is the Hollywood-esque sensationalized ECT scene in the video has more than 61 million views after only three weeks.
After I watched the thoughtful and provoking visual storytelling of her song with Post Malone, I was a bit shocked (pun-intended) to see a life-altering procedure the American Psychiatric Association says spikes blood-pressure in the brain three times normal. The procedure sends the body into a grand mal seizure so violent it consumes all energy and oxygen to the point that it temporarily flat-lines brain activity in an attempt to “reboot the brain.” Watching such torture trivialized to the point of showing it as a harmless attempt to subdue and regain a lost psychiatric patient was traumatic for me. But, I’ve endured this treatment. What really struck me is the reaction my tweens had to seeing Taylor depict this experience as so commonplace. In essence perpetuating the misnomer that if you have depression, shock therapy is the only eventual solution to what ails you. As the video was playing my younger daughter asked, “why are they doing that to her?” My older daughter explained, “They’re shocking her. They do it sometimes if you have really bad depression.” While what my daughter said was completely accurate, I wondered if 61 million viewers knew this a depiction of a treatment still being done to at least 2 million annually worldwide.
I wonder what Taylor knows about ECT. Deciding to artistically portray ECT in a music video to a core audience and demographic — who are statistically at the highest risk for mental health challenges, is what prompted me to write this letter. May is Mental Health Awareness Month and there is no better time than now to have a serious conversation on the myths and stigmas associated with mental health care. For starters, mental health concerns can begin in adolescence or young adulthood during the navigation of significant life changes, careers and relationships. Things can grow worse during midlife over the course of additional possible career changes, divorce, or even empty nest syndrome after children are grown and gone. Throw in a faith crisis at some point during that journey followed by retirement and health concerns. Shit! We just covered the entire life span of the human race! Taylor’s audience is not just tweens. As someone in that demographic, I am compelled to share the possible life-altering side effects to the victims and family of millions being subjected to ECT annually.
What I have mentally, physically, and emotionally gone through helped me understand Taylor’s perspective on emotional pain and develop an appreciation for her relatable lyrics. It makes me empathetic to what she must experience mentally at her level of fame that — I suspect — pulls from lived experience far beyond exceptional breakup anthems. No one compiles a lyrical library without deconstructing their own painful experiences along the way.
Don’t misinterpret my intention. Before the largest, most devoted and influential fan base gets up in arms about my complaint, I want to make it clear, I’m not angry at our century’s queen of pop. Hopefully she doesn’t know anyone brutally injured by ECT. That said, if she’d known me or the people in the post-ECT support group, I’m confident she would have never trivialized ECT. But perhaps she did know. Maybe that’s why she perfectly cast the sweet, empathetic Posty as the compassionate soul who rescues her mind and body by unplugging the machine — ending the torture. If that’s the case, what a damn hero! I’d love to meet him!
I wonder if the millions who have viewed the video, go on about their day to work, family, or memorizing the next TikTok dance trend without quite possibly ever knowing what that ECT scene means to millions of ECT survivors, their families, caregivers, or loved ones who are left with the impossible task of picking up the pieces of its aftermath. What does the trivialized scene mean to those mourning the loss of a loved one killed by ECT-induced hemorrhagic stroke, status epilepticus, or cardiac arrest? Many ECT recipients later realize ECT left them with “permanent memory loss or permanent brain damage” acknowledged by the device manufacture, but difficult to identify without a specialized brain scan. It is not required to have a brain scan prior to undergoing the procedure, so many patients are left damaged without a benchmark of what normal used to be. So many doctors, blame the memory loss and non-existent executive brain function, cognitive impairment as a simply the result of severe depression and anxiety. That’s what I was told. I was assured ECT does not do that — as I am sitting in front of them as evidence it does. I would respond, “I’ve had Major Depression and Generalized Anxiety Disorder since I was a teen. What I have lost is inexplicable. This is more than severe depression. Calling it ‘devastating’ would be an understatement.”
When injured, patients are abandoned. No help. No rehab for their brain injuries. If they stop treatment for a variety of reasons, ranging from suicide to lack of insurance coverage, finances, there is no way of knowing. In my experience, they don’t follow up unless you are on an indefinite maintenance ECT schedule. When my family saw my cognitive decline and asked how much longer the series would last, they were simply told more ECT would be done indefinitely “until the mood improves.” Recent research revealed approximately 44% of ECT recipients suicide within two years. I defied the statistics and lasted double that time before attempting suicide to escape the new hell my mind had undergone from an inescapable permanent brain damage I didn’t consent to. After having a successful career for a decade as a journalist I couldn’t even write a coherent sentence for four years post-ECT. Not only did I think my intellectual knowledge, the memory of my son’s birth, and 35 years of life experiences were extinct for good, I also had severe anhedonia. I didn’t even know what I liked to do for fun. I couldn’t remember what hobbies I had or how I had participated in them.
Utahn shares personal experience with Electroconvulsive therapy(s) “permanent memory loss and permanent brain damage” — manufacturer identified serious adverse event risk.
I was an infant in an adult’s body. Constantly needing to shadow others, because I did not know how to conduct my day. Simply put — my executive function was trash. The people who reached out and helped convince me I wasn’t alone were those who had been in a coma after a car accident or had a Traumatic Brain Injury (TBI). I had to learn daily tasks and functions over again in the same way as someone after a severe stroke or TBI. I felt depressed. My anxious heart felt as if it was beating out of my chest constantly. I thought my only solution would be if I could pull it out and stop it forever. I was overwhelmed by the burden I felt I was on everyone. No one understood why I couldn’t just be motivated and have hope things would one day improve. I had no joy and experienced suicidal ideations daily for four years straight.
Those with the most to lose (people who cannot return to work when their education, work experience, memories of important life events and relationships are erased by ECT’s “hard reboot,” are the most likely to suicide. No one can quantify how many suicide after ECT. Hell, no one even knows how many people get ECT yearly because of it’s unregulated use. If this sounds unbelievable and needs to be changed, contact your local congressperson and ask for ECT to be regulated by the FDA. Dr. Harold Sackeim estimates about two million people receive it worldwide every year. That estimate was made before 2018. Since then, the “34% increase in US hospitals providing ECT since device reclassification may reflect what happens when hospitals identify an unregulated income source.” It’s a plausible conclusion when people realize it’s likely the only medical treatment that can be reimbursed by insurance even without proper documentation.
ECT has been lauded a “safe and effective” procedure done since the late 1930s and also perpetuated by doctors as the “gold standard psychiatric treatment,” only performed on a fraction of the most desperately ill who have no other treatment options or have “treatment-resistent depression.” It’s been said it is much more humane now than how it is depicted in the 1975 film “One Flew Over the Cuckoo’s Nest.” It only appears more humane because they use general anesthesia and muscle relaxants during the procedure now. The methodology is the same used during The Great Depression. We can do better in 2024.
Maybe, like me, you were told it’s “lifesaving.” The world thought it was “safe and effective” until a 2023 court case, Jeffrey Thelen v. Somatics, LLC (Case №8:20-cv-01724), A U.S. District Court jury found the manufacturer guilty of failure to warn. Since then, the manufacturer has updated its marketing information to include risk of “permanent memory loss or permanent brain damage.”
The Food and Drug Administration has no evidence to support the “life-saving” claim. In fact, researchers argue the opposite is true. Like me, you likely didn’t know the FDA or any other international device regulator has no record of ECT device safety testing on humans and didn’t know they pulse nearly an ampere current through the human body “without any clinical or scientific rationale.” Maybe you’d be as baffled and upset as I was when I discovered “modern ECT devices” being used on millions were only tested six times on two dalmatians back in the 1980s. And without any training or qualifications you can buy one of these devices, that can destroy your brain and heart, second-hand on Ebay for $1,200.
Maybe you think, “I’ve never met anyone affected by it, so it doesn’t affect me.” Have you ever met someone who has had a colonoscopy, C-Section, skin cancer removal, knee surgery, cataract surgery? These are all medical procedures that are done to at least a million people a year. After reading about my experience, you can’t say you don’t know anyone affected by ECT. You’ve now met me. And odds are someone within less than six degrees of Kevin Bacon is silently suffering. You can trust and verify my story, because, as the kids say nowadays, “I’ve got the receipts.” If you want to hear a story from one of the voiceless damaged that no one believes (not even the doctors who performed the procedures) then continue to read on. Only my family and friends — who knew me before treatment and saw the unmistakable decline after — know my full story. Until now. I’m now an unemployed journalist who had this procedure done to me far less than other survivors, who experienced its effect more than 100 times. I’ve tried going back to work; multiple times. I haven’t successfully found a good fit to work with my disability. Others with a TBI may empathize, you don’t know what accommodations to ask for when you can’t remember what you don’t know how to do — until you try to do it again, after a brain injury — and can’t do it. I hope I will one day I will find a job willing to work with me. I want to help others that have experienced delayed electrical injury find hope again and a life after ECT — like I have.
I thought I was alone. For several hellish years, I experienced an albatross of thoughts that never seemed to land on a conclusion or explanation for what happened. I’ve since learned there are millions of ECT survivors. The ones who were helped by it will shout its effectiveness from the rooftop. For example, of Star Wars fame, Carrie Fisher and author Kitty DuKakis, wife of former Massachusetts Governor Michael Dukakis come to mind. Also, Comedian Gary Gulman touts ECT as helpful. I am cognizant not everyone is comfortable discussing mental health, so I’m not outing any celebrity who hasn’t already gone on record.
This is fantastic for them. I applaud anyone who can find a solution. I don’t doubt for a minute they feel ECT worked for them and they have avoided the less advertised side-effects of cognitive impairment and permanent memory loss. My purpose is to be a voice for the voiceless for whom it didn’t work. We are not the majority. We are not the celebrities. We don’t have a voice. We don’t even have a platform. The statute of limitations ends in most states before a victim even regains enough cognition to realize they could sue or hold any one accountable for the damage. Again, contact your local Congressperson if you feel that needs to change.
As ECT survivors, we echo the World Health Organization in decrying coerced (e.g. court mandated) ECT on child, youth, the elderly and vulnerable populations, giving treatment without “free and informed consent of the person concerned. International human rights standards clarify that ECT without consent violates the right to physical and mental integrity and may constitute torture and ill-treatment.” The WHO further recommends outlawing ECT use in children and youth. Afterall, “permanent brain damage” cannot be reversed. We decry using ECT on people with Downs Syndrome and Autism. For decades, psychiatrists and religious organizations used ECT for so-called “gay-conversion therapy” — and still do in some nations. These are fellow humans in the most need of someone to listen and help them, not get shocked into silent submission, then quietly discarded to become someone else’s problem.
Do you know any celebrities who were harmed by ECT? They are out there. The late-country music star Naomi Judd went on record in her memoir “River of Time” detailing her battle with severe depression, having ECT, and not improving. Of her ECT Experience, Ms. Judd stated that after her 24 ECT treatments, for more than two and a half years, “all food started tasting like paint thinner.” She died of suicide in April of 2022. The late award-winning actress, dancer, Judy Garland and the late, Tammy Wynette, a country music singer also had ECT — but it was given on the early, exponentially weaker devices which only generated about 150 milliamps. Modern ECT devices pulse out nearly an ampre current for up to eight seconds, depending on the dose. To put it in perspective, can you imagine being shocked with 100 times the electrical current used by Tasers and cattle prods even once? Those currents are attached to your skull, and then shock a patient for an unregulated amount of time that is at the individual discretion of the psychiatrist. It can last up to eight seconds — or for a watching family member — it can seem like an eternity.
People take notice and laude individuals who say they “beat depression” and share their magic pill or procedure. But those who struggle a lifetime to figure it out are not seen as the heroes and warriors they truly are. That needs to change. Mental Health Awareness Month is a perfect time to reach out to someone you know who has battled demons and let them know they are warriors. Don’t assume they know. Tell them they inspire you.
Award-winning media outlets, such as 60 Minutes, The New York Times, The Washington Post and other reputable journalistic outfits share courageous stories of ECT benefits. These outlets are members of The Society of Professional Journalists and pride themselves on ethics and journalistic integrity, but seem to largely omit and ignore reporting on ECTs harms. For whatever reason, they have not chosen to tell the stories of the non-celebrities, the thousands, possibly hundreds of thousands ECT did not help — abandoned with crippling acquired traumatic brain injury (TBI) from repeated electrical injury. I challenge any journalist to adhere to the first tenet of the SPJ Code of Ethics: “Seek Truth and Report It.” If you want that perspective, or the bread crumbs of the inconvenient truth — you know how to find me.
After every doctor I spoke with told me what I was experiencing couldn’t happen, I turned to Google for a confirmation bias that this treatment was “safe and effective.” I wanted to believe it was, so I didn’t feel like I was constantly being gaslit — but my experience told me otherwise. I only found the positive stories shared by famous people.
Conflicted, I thought, “I must be wrong. Maybe this is ‘safe and effective.’ Maybe my terrible experience is all in my head or so rare, no one has ever published about it.”
Then one day I found another narrative online, buried beneath tech savvy SEO. It wasn’t on the front page of the internet. As a journalist, my cynical training taught me that even if my mother said she loved me … to “check it out.” So I did. Every angle. I kept looking. I assumed absence of evidence is not evidence of absence. I mean, I’m still here. I’m evidence. There must be humans silently suffering like me. If I didn’t know who to talk to or report the damage done to me for fear I would be labeled as a just another “psychiatric patient,” “lost cause,” “crazy,” or “nuts” then there must be more out there like me. I can’t be the only one describing what happened and constantly getting gaslighted by doctors who would say, “It’s a safe and effective treatment nowadays. That can’t happen.” I never did, but wanted to tell those doctors who damaged me:
“They claim ECT is safe and effective, yet psychiatrists don’t experience it like patients. Shouldn’t they undergo ECT, multiple times, to truly understand its effects?
ECT did not help my depression and anxiety, instead it added to it and left me with long-term permanent memory loss and cognitive impairment (documented by a neuropsych evaluation). The brain damage was so bad the first few months after ECT ended in 2020, I didn’t know how to drive from my house to the grocery store in a city I was born and raised in. I forgot my only son’s middle name and didn’t remember his birth in 2019. I did not even recognize or know my behavioral therapist — who I had seen for months prior to my ECT treatments.
When I was admitted to a hospital (in between ECT sessions) for suicidal ideations and suddenly stopped showing up to a scheduled series of ECT treatment appointments. No one called to ask how I was doing. I only got a call to inform me I had missed an appointment. My family let them know it was because I was hospitalized. To which they responded, “Well, let us know when he would like to reschedule.” No post-ECT aftercare for vocational rehab was offered after my brain function and cognition was destroyed. In fact, several years later, The Huntsman Mental Health Institute — where I received ECT — emailed me asking for my help participating in a study about the efficacy of ECT based on their genetics. I wrote them back stating, “I’m not just a qualified study participant. I’m a father, son and used to be someone’s husband.” I explained, “those treatments have changed my life … in the worst way possible. In the short two years since my initial ECT treatment I have lost my job, my marriage, and my home all due to the side effects of brain damage incurred from unilateral and bilateral ECT treatments that induced 37 grand mal seizures within my body. The number is even higher if you calculate all the times the psychiatrist decided to do ‘doubles’ where two seizures were induced during one treatment.”
The response I received, was “I am so sorry … It saddens me that this is the experience that some people go through. For now, I will remove you from this genetics contact list.”
I’m not saying ECT isn’t effective for some and it should be completely banned. I’m advocating that at a bare minimum it be regulated by the FDA and consistent so someone in Australia or Denmark goes in for a treatment and gets the same type of procedure as someone in Utah, New York or California. Right now, it’s still the wild west of shock therapy. There are no dosing regulations for using these machines. How much voltage and amperage is arbitrary. But psychiatrists offering treatment will say to patients, their families, and even senators and other politicians that ECT rapidly improves mood.
I’ve met some who say ECT was a life-saving procedure for them. And do you know what? I’ve learned to believe them. Maybe it was. Good for them. I’m glad they feel they have found a solution. With the infinite number of head sizes, head shapes, and more than 1,000 possible doses, they might have escaped without harm.
All I can speak on is my personal experience with ECT and a myriad of treatments I was the guinea pig for since I was a teen. For the rest of us who didn’t escape ECT without harm, I want you to know you are not alone. Please stay. Tell a trusted friend or family member. If ECT, other mental health brain stimulation procedures such as Transcranial Magnetic Stimulation (TMS) or any other SSRI, MAOI, marijuana, Ketamine, an Ayahuasca retreat or other prescription cocktail doesn’t seem to work, don’t lose hope. If you don’t have hope, you have nothing but suicidal ideations. But hope can still exist within those ideations — even if it is just the desire to hope again. Keep hope alive. Never give up wanting to get better.
I’ll end my thoughts with a callback to the beginning, by sharing again what Ernest Hemingway said.
ECT loses the patient. If you remember none of what I wrote, remember what someone who said it better than me could say after his brain was damaged. It was the last wisdom we gained from him before he left this life:
“What these shock doctors don’t know is about writers and such things as remorse and contrition and what they do to them . . . Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business? It was a brilliant cure, but we lost the patient.”
— Ernest Hemingway on electric shock therapy from A.E. Hotchner’s book “Papa Hemingway.”
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Sarah Price Hancock, MS, CRC contributed to this letter and ensured factual accuracy against recent research and WHO guidelines.
What you can do to support people with a history of Electroconvulsive therapy
If you know and love someone who has had ECT (good, bad, or mixed experience) and want to help them, help ECT researchers like Professor John Read, and ECT survivor non-profit organizations like Sarah Price Hancock’s Ionic Injury Foundation and Anna Webb’s Life After ECT.
For example, John, Sarah and other ECT researchers created the first ever international survey open to recipients and their family and friends. The survey is now live through the University of East London. The more we know, the more we can help others who are struggling find hope and limit so many to suicide or a hopeless life with no function or joy.
Full disclosure: The Survey may take you 30 minutes, but you can take breaks and come back to it. If you’ve read all of this … something within you is passionate about helping others. Listen to your passion. Help bring a voice to the voiceless in the time it takes to watch one short episode on Netflix.
Click the following link or scan QR code below to take survey: Survey to take of people who have had Electroconvulsive Therapy (ECT), and their family and friends.
