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 a steady and progressive decline in my ability to retain memory. I am very afraid that I will be unable to function alone in the near future. 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 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. 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.