It is difficult to describe fully in words what I live with daily after having electroshock. I had to relearn and reteach myself many things. I live day to day, often in the moment, as I cannot recall very much of my past. I do not carry my history any longer. For the most part, what I know of my history has been parroted back to me by friends and family.
People will come up to me at times and start conversations as if we know one another, and I confabulate to cover my embarrassment in not knowing who they are. If others are with me they will tell me later that it was someone I used to know.
I do not experience memory any longer in the “reliving of the memory”. It is as if I read a sentence pertaining to a memory in a book that someone else wrote. I cannot remember conversations, books, movies, shared good times or bad times.
I have kept journals since 2013 and I have written about my difficulty in retaining memory. I keep copious notes, chalk boards, and voice recorders.
I used to be able to retain some memory for about a week. Now it is down to a couple of days. Days fall away into an abyss and the memories associated with them.
I am often told “you seem fine”. But that is the farthest thing from the truth if they knew. I do not recall even the significant events in my life that one looks forward to and loves to reminisce about.
Lost Family History
I have two grown sons. The knowledge and experience of their lives have basically been erased in my mind. I recently took a friend’s child to a play center where another family was having a birthday party for their child. I started to try to think of my own children’s’ birthdays and could not recall one. I became very distraught at this realization and began to weep. What presents were my child’s favorite? What did their cakes look like? What did they make me in school? What were their first words? What was it like to smell and hold them for the first time? What, did they want to be when they grew up? What about their proms? What about…?
Due to electroshock, memories of the day of my wedding, the birth of my children, etc. are lost to me. I do not keep photos of my family up in my home. It is too painful as I cannot tie memory to the events in the photographs.
A Lost Career
I know I dreamed of being a nurse since I was a small girl. My life as a nurse was my passion. My goal was to become a flight nurse. I cared deeply about my patients, and would have done anything to protect them. Electroshock erased almost all memory of an almost 25-year career as well as my college education.
A Life Erased
My life as I knew it has been erased. Who I was has been erased. The experience of my closest relationships has been erased and is daily erased with each interaction.
I used to have a photographic memory. Now, based on neuro/cognitive testing, I have a 10% visual memory ability . An MRI reveals lesions and atrophy in the frontal and temporal regions where I had ECT. I suffer at times with panic attacks, agoraphobia, double vision, and can easily become disorientated in my surroundings. I have severe sleep issues and rarely dream any longer. I have periodic suicidal depressions (the risk of suicide doubles following ECT). I show abnormalities on the four neuro/cognitive tests that I have had done. In the results of one is a comment about “the magnitude of her cognitive deficits”.
At night when falling asleep I try to think about the past, and it often creates a sense of panic when I cannot recall these memories. I have to learn to let it go each day.
I have seen a therapist for the past couple of years and do not remember a single session. I can remember some excerpts from a session, but it is out of context and any kind of time frame perspective. Any insights gained I have to get into one of my journals before it is forgotten. I often review my latest journal and many notes to keep me functional in my life daily. It is very difficult to describe this memory and cognitive losses. One feels almost disconnected from the emotions of memory and it is simply what I call a “thought memory” and not the actual re-living of the experience. When having an enjoyable conversation with a friend or family member, I often find myself wishing that I could hold onto the memory of this time with them, but I know it will most likely be entirely lost to me within a couple of days.
The Violations of ECT
My autobiographical history has been erased. Electroshock victims often will call this “ECT rape”. That is not an overstatement. I feel it is more a rape of the soul. The memory loss associated with this is global.
Like a rape victim, I deal with a great deal of anger at the arrogance of the medical establishment which allows this to take place and then covers for one another. This misjustice of patient care is criminal.
The Mental Health System & Electroshock
What I have learned in this mental health system around this issue of electroshock is that advocating for patients is the farthest thing from people’s minds. It’s about not rocking the boat. It’s the “we know what is best for you” attitude. It is abuse of power, and that abuse of power mostly impacts women. It’s about the way “it has always been done.” I say firmly, NO! Physicians, have a duty to warn, a duty to protect, and a duty to not cause harm. They are not warning, and they are not protecting. They are failing criminally here. All the support staff witnessing this and saying nothing are just as culpable. This would not be tolerated in any other patient population.
Psychiatrists tout this as life-saving. Likewise, is the cardiac defibrillator. Yet in the case of the defibrillator there has been responsible testing of both the procedure and device. To use a device and do a procedure without any FDA testing for safety or effectiveness, and withholding this from patients is inexcusable.
Psychiatrists using ECT inflict known traumatic brain injuries in patients, and claim it is beneficial. At the same time they elaborate on neurocognitive and neuropsychiatric damages secondary to electrical trauma in their own literature.
Our memories are what make up a significant part of who we are. Mine are lost to me. I cannot recall the tenderness between friends in conversations and things shared, the looks of my children when they were happy or naughty, the nuance of a group of people and how it made me feel in a time, a good meal, a funeral of a loved one, or good books read.
I am not alone
We are not patients locked on some back ward of a state hospital. This is happening in many notable teaching facilities and at reputable HMO’s such as Kaiser Permanente. Many of us had families and careers before we came into this psychiatric system. Finding ourselves in difficult circumstances we turned to psychiatry for help. We believed what was told to us by physicians we entrusted with our care. Do not think that this cannot happen to you. We have been lied to and our complaints resulting from this procedure have been discounted.
The courage and the resilience of my peers is noteworthy. We struggle daily to maintain our lives after this procedure, and want justice for what has been done to us.
It is important for my peers to be willing to speak out about this and bring attention to this issue. We should be angry, not ashamed, at what was done to us. There is a media page set up on this site that I encourage all involved around the issue of electroshock to fill out.
We are up against the FDA, the APA, and major health institutions that have made a great deal of money at this for decades. If we are not willing to speak out and garner media attention, it will be that much more difficult to bring an end to this. I encourage you to each reach out to media and share what has happened to you and continues to happen to others globally every Monday, Wednesday, and Friday mornings. I believe in speaking out that attorneys will see cause to bring future suits, and it will protect others who may be considering this procedure.
I am grateful to my peers for their support and strong Spirits. And I am encouraged by their courage and determination. No one has the right to rob another of the human right of a lived and remembered experience.
Dear Sandra, please forgive my delay in responding. I do care but get side tracked secondary to memory issues you fully understand in addressing areas i should address right away. A great deal going on and I hope you will forgive my delay? I hope that you will not put “your whole life to rest.” I would like to read your book. You may contact me through Deborah@ectjustice.com. I look forward to corresponding with you. Warmest regards.
https://www.cchr.org/cchr-reports/brutal-therapies/introduction.html
So sorry to hear your story! You are not alone, thank you for sharing and helping spread the truth about ECT. Its promoted as the “safest and most effective treatment for depression” and it IS NOT.
Human Rights activists are finding out about the brutality and exposing it in the link I shared above. Thank goodness…
Everything in this article couldn’t be more true,after having ECT and being told lies about there being little to no side effects and my memory loss would only b the treatment itself.I am now lying in bed day after day as I can’t remember how to do my job or look after myself or my family. I am angry all the time and have been told time and time again it’s all down the depression by so called professionals! I want to kill myself now more than ever and refuse to stay on this earth with no memories of when I was well or my childhood and having a complete inhability to learn new things
I had ECT 2013-2014 for a total of 32 treatments. It’s 2018 and I’m 32 years old, living with severe memory loss. I can’t remember most of my past. I can relate to those parroted memories. Fortunately my husband is a patient man with a great memory and he helps fill in the blanks.
I recently visited my college town to see some friends. I saw other people who looked familiar, but I couldn’t place them. I hate when people start sentences with “Do you remember when…”
I was seeing a nurse practitioner for about a year. I was diagnosed in 2012 with depression, anxiety, bipolar, and probably some other things. This NP didn’t try anything else and told me to do ECT. I didn’t know any better. I was told I’d have short term memory loss. That was 4 years ago! Recent tests (and a better doctor) have shown I’m not bipolar. I was depressed and suicidal at the time, and ECT made it all worse. In addition, I’ve become an angrier person and I’ve lost touch with close friends due to agoraphobia. Not every day is bad, and I’ve barely been able to hold a job, but life shouldn’t be like this!
ECT needs to stop NOW!
Your experience could not mimic mine any closer. Every word I read is EXACTLY how I feel. Thank you so much for sharing. It feels good to know that there are others out there who have experienced this horrible side effect caused by ECT.
This story was truly life changing for me. For years I believed that ECT was my only option (at the time) & no one informed me of what was to happen to my mind in the future. I suffer regularly from constant dizzy spells & can not remember past faces or memories for the life of me. To this day, I still face the “I’m just a fragile doll not capable of anything” stigma by family members. I just don’t think a young women at the age of 21 (whose brain is still developing) should have been subjected to such a permanent/harsh treatment.
Loss of sleep & depression also increased as a result of ECT. I trusted these medical professionals to help me, but quite the opposite occurred. I am a survivor of child abuse/rape victim & instead of help after multiple suicide attempts, I was left with high doses of medication, a misdiagnosis (which follows me to this day) & high trauma. The medical staff was uncaring, and I was actually yelled at for accidentally wetting myself during one of the treatments (possibly from the anesthesia). Couldn’t really clean it up myself because I was still strapped down & pretty out-of-it. Again, just having that feeling of being punished for actions I had no control over.
Today, I still struggle with deep depression, but find alternative, natural ways of coping. Thank you for anyone who shared their stories. Very brave & courageous souls. I do not feel alone anymore. Can’t thank you enough.
This aritical was interesting
I’ve had 9 ect treatments 19 years ago .. I’ve just came out of an ANOSOGNOSIA state of mind I’m angry and nobody will listen .. I know I’ve had brain damage and I didn’t consent to it .. Doctors have been diagnosis me bipolar and I’ve been taking lithium when all along its damage from ect .. They will blame another reason than face facts .. I’ve got so much from here thank you x
Thank you for speaking the truth about this horrific Josef Mengele procedure. I’ve never had it and never will. I have a specific line item in my Advance Directive on health that there is to be NO ECT done on me for ANY reason.
Dear Jon, thank you for your comment and interest. I hope that you will share this information with others so that they may be protected. Warm regards to you.
I went through ECT at the young age of 6. I remember the nights as if I was still there experiencing the ordeal. I am 43 years old, now and have gone through a handful of therapists since I was 12. It’s affected my family life, personal life and I have been trying to locate others who have experienced the same thing.
I feel as though the 1980s were about 10 years ago. I don’t remember much of the 1990s. ECT left me with severe anxiety which has never improved.
Deborah I thought you were describing my life. I couldn’t believe what I was reading. I’ve lost 80% of all my lifetime memories. And when I do recall it it’s usually threw a photograph I once had. I have no emotional ties to any memories except for my children which are usually sad ones that bring tears. So I don’t stay there long. I too live right in the moment, no yesterday & no tomorrow which I guess is good. I don’t mind this aspect, but I also can’t plan goals and hate where I am. So where do I go? I only had about 10 ECT’s before I put a stop to them for causing severe memory loss, anger & violence, but I was also psychiatrically drugged for 35 years, the multiple cold-turkey withdrawals that my Mental Health workers said were ‘just fine’ to do almost killed me every way possible. I too have abnormal EEG’s from the cold-turkey Klonopin withdrawal seizures that still effect me today even after almost five years of healing. There very strange and I have no one to talk to about this. My central nervous system has been rammed through the meat grinder leaving severe cognitive damage but thank goodness, I look fine on the outside, therefore, no one can tell. Yes, we’re pretty clever at telling little white lies to cover our tracks at not remembering aren’t we! I’m not mentally ill and doubt that I ever was. I’ve been healing for almost 5 years now and totally drug-free (Hallelujah!) and doing great. I fought my Mental Health-care system and lost my case after they blatantly lied. I even wrote a book detailing my life on psychiatric drugs but will never have the money to get it edited. So I put it to rest. I put my whole life to rest.
I’m sorry to hear about your difficulties.
There are many ways to get help with editing without having to pay large sums of money. Local writing groups, and online facebook groups, small publishers, competitions, mental health charities will often be happy to offer health with writing and editing. Your book could be a great help to others, and a valuable teaching aid for the public and mental health professionals.
Your experience resonates very clearly and sadly with me. I have lost my history, my career, and my future. It is bad enough to have lost past memories, but the inability to make and keep new memories
is truly frightening. I think you have done a wonderful thing in creating this website and in bringing about the class action lawsuit filed in California.
I continue to be appalled at the failure of real doctors, especially neurologists, to put a stop to this human rights violation. It is criminal, it is assault, and truly, a rape of the soul.