As a young child I loved to write. Even before I took my first college poetry class in 1980, I enjoyed writing in my diary and writing letters to people all over the world. I enjoyed reading diaries of people who lived long ago.
Every year I traveled with my family to my grandparents’ home in New Jersey, where we gathered for the Seder, our Passover ceremony. I was excited to see my cousins because I knew that toward the end of the Seder, we kids would hunt for the Afikoman—a ritual involving a half piece of matzah that was hidden for the kids to find. Some very small children found this the most exciting part of the Seder. My grandpa hid the Afikoman every year. We didn’t seem to notice that each time, he chose the same place: the inside of the piano. When we were older, I imagine the occasional smirk between us was mostly over the effects of the four cups of wine.
Later, when the older adults were likely certain us kids had lost interest, they spoke to each other in Yiddish, that secret language they reserved for grownup talk only. Sometimes they argued. Eventually I learned that something awful had happened not long before I was born. I read it in the pages of Anne Frank’s Diary. At synagogue they said, “Never again!”
Was that why we kept telling these same stories, “We were slaves in Egypt,” over and over? I learned that to remember is precious. I learned that if we do not keep sharing these stories, acts of genocide will repeat themselves.
This is why I tell my own story.
During my last year of college, I felt like I had become the lost Afikoman. Like several other young college students, I went to a therapist to find out the answer to life’s questions. It was all downhill from there.
I first had ECT in the fall of 1995, when I was 38, while I was in North Belknap at McLean Hospital, which was outside of Boston. Later, when it was barely spring, there I was, back in there. I felt defeated. I had failed! This was the message that we patients heard, whether the “staff” told us this directly, which happened sometimes, or they conveyed it by their actions.
I don’t know why I assumed doing something that didn’t work the first time, shock treatments, was going to work the second time. Maybe I assumed that such a sophisticated procedure had to work. These were “doctors” in charge, weren’t they? My psychiatrist, Dr. Montgomery Brower, who was a junior psychiatrist called a “resident,” did not want to go ahead with it. I never knew how this decision was overridden. The patients were never privy to the real origin of these decisions made about us.
I wasn’t the only one on the ward having the ECT procedure. There were a few others, mostly female. We shared between us the best techniques for getting the “goo” out of our hair, the gel that had mysteriously showed up as soon as we awoke from anesthesia. Other than that, we were nearly silent.
Some of the patients muttered about memory loss. So far, I had not had any. My boyfriend, Joe, pleaded with me, “Jules, what about the next treatment? Or the next? Don’t you realize people die from this?”
“Oh no, that’s not possible!” I replied. “I saw a film on this. A video. They showed it to me. It did say you could die, but that’s probably only from the anesthesia.”
“But you don’t know that, Jules,” he said.
In the summer, they started me on bilateral ECT. My Medicare insurance had nearly run out and so they did the ECT with me as an outpatient. After the switch to bilateral, things started going wrong. One day, I was walking my dog on my street, and suddenly, nothing around me seemed familiar. How could I be lost like this?
After I finally made it home I decided to brush my teeth. I picked up my toothbrush, telling myself I needed to replace it. Suddenly, as I twirled the toothbrush between my fingers, I realized I had no clue what to do with it. I put it back down, bewildered, and left the bathroom with the toothpaste sitting on the sink uncapped.
The psychiatrist claimed all this cognitive confusion was a sign of depression, and stated that I needed more electroshock. Joe disagreed. He told me later that every time he dropped me off at the ECT clinic, he felt like crying.
I called my dad on the phone. I tried to keep it together, but he knew something was wrong. Finally, I explained to him that my thoughts seemed scrambled. Like scrambled eggs, I thought. Then I pictured Humpty Dumpty sitting on the wall. “Dad, I think a thought, and then it flies out of my head.”
My mom had gotten onto the other phone line—they always did that, especially when they were worried. “You were never like this before, Julie,” my mother said. “You always did so well in college.”
Oh yeah. I had been to college, hadn’t I?
It wasn’t memory that I had lost, although the memories I had seemed fuzzy like a photo that wasn’t taken properly. That, for me, only lasted a short time. The problem, that I realized was with my thinking process, did not improve.
I figured I must have schizophrenia. I was never mentally ill before. I was only pretending. Now, it’s for real. What have I done?
They stopped the ECT at the end of the summer, but even as winter approached, the problems remained. I lost my thoughts before I was halfway through each sentence, and then I was unable to finish it. Day treatment, which consisted of filling out grade school-level worksheets in “group therapy,” had not helped. What was wrong with my brain? I continued to demand answers from my psychiatrist and from anyone who would listen. They called me “attention-seeking.”
The psychiatrists tried various approaches that oddly enough, didn’t seem to fit. Brower teamed up with my neurologist, Dr. Kirk Daffner, and together, they blamed my menstrual periods. They claimed I was dissociating. They said it was a “coping problem.” They even tried the “bad parents” approach. One of the staff claimed the problem was my relationship with Joe, urging me to break up with him.
I was still not improving. They took me to Dr. John Gunderson, a supposed “expert” psychiatrist. They knew that Gunderson would diagnose any woman who came near him with Borderline Personality Disorder, his pet diagnosis. What Gunderson did was hardly an evaluation. His “interview” consisted mostly of jeering at me, gaslighting, and mimicry.
They sent me to dialectical behavior therapy (DBT – a type of cognitive-behavioral psychotherapy), which is mostly some very elementary stuff for people who can’t cope with their emotions. I wondered why this “therapy” was missing the mark. The new therapist I had seemed nice, and for a change, intelligent, so I went along with it.
But what is wrong with my brain?
My parents kept asking what had happened. Joe continued to tell me clearly it was the ECT. “That isn’t possible,” I insisted. “The video said all that only lasts a week or two.”
“Don’t believe everything they tell you,” Joe reminded me.
One day, when I went to see my therapist, who was a second-year psychiatry resident, she told me, with a rather grave look on her face, “I hear you had ECT.”
Back then, I wondered why they had taken months to inform her of this. I tried not to act surprised. She didn’t know? Why had they left this out?
I hoped for answers. What was wrong with my brain? Were they all grasping at straws?
I liked one of the medical students, Tarik, who hung around with Dr. Eliza Meninger, who ran the day program, because of his youthful innocence (I never figured out how to spell his name). Maybe, on another level, I yearned for the days, whenever they were, when I was a student myself. Either way, I trusted him. They knew this.
The day program met in a building called “Rehab.” Late in the day in December 1996, when the Day program was mostly over, Tarik took me aside. We sat in a corner of the Rehab cafeteria, a large room with tables that resembled a cafeteria in a school. No one was around. The shades had been pulled down.
As I look over my written replays of this conversation, even the published version, I realize now that his end of it was carefully planned. His step-by-step progression was intentionally leading somewhere. Even then, in my confused state, I knew how persuasiveness worked.
He told me, “You’ve been like this all your life, right? Do you really think it’s going to improve? You have the best doctors, and this is the best hospital. You’re not getting any better. Unfortunately, at this point, it’s not in our best interest to get rid of your problem, but to teach you to accept it and cope with it.”
I was so relieved, I might have started crying. “So I don’t have to try anymore?”
“No,” he said.
He seemed like the Angel of God to me.
Hospitals, like schools, are highly hierarchical. Now that I have had two decades to think about it, I realize that the medical student was not acting alone. Medical students do rotations, which is a chance to try out various branches of medicine to help them decide which field would be the best fit. These days, when I talk to medical students, they reiterate that they are on the bottom of the hierarchy. I generally respond by reminding them, “Actually, you’re not. Patients are.”
I’m sure that afterward, the psychiatrists asked Tarik how it went.
Tarik, Gunderson, even Brower himself, were all cogs in the administrative wheel that pointed in one direction only: Coverup.
All over the country, and in fact, all over the world, damages done to patients from ECT, a financially lucrative procedure, are routinely covered up. After a patient won over a million dollars in an ECT lawsuit, she was put on a gag order by the judge (I’m leaving the name out here to protect this very brave ECT victim). In California, a group of ECT victims settled a major lawsuit against Somatics, the manufacturer of ECT machines. Though Somatics settled out of court, they finally admitted that ECT can cause brain damage, and confessed that patients who received the ECT procedure were not properly warned ahead of time. Despite efforts by ECT opponents, this landmark lawsuit barely made it into the headlines. The only state that releases statistics on deaths from ECT is Texas. What we are finding is that the death rate is much higher than the psychiatric industry’s propaganda suggests. This included the propaganda video I watched at McLean, decades ago.
My recovery from ECT did not take “a week or two,” as the video suggested, but in fact, it took about a year and a half. One day I woke up out of the fog, seemingly out of the blue. I had been trained well not to expect it!
It didn’t take long before, mysteriously enough, the unfounded diagnosis of BPD disappeared from my record. Even when I finished my published memoir in 2009 (my graduate thesis), I had no clue what had caused the mysterious “illness” over a decade previously, or what cured it.
Years later, I began to compare notes with other survivors of ECT. Some had lost their memory completely. Others had different kinds of permanent damage. Some had cracked a tooth or two during the procedure. Those who reported improvement told me, “That’s how it happens. It’s like you wake up. It seems to come out the blue.”
Survivors of ECT reached out to me from all over the world, asking how they can get their minds back. For many, it had been far more than the year and a half that I went through. Many reported lowering of IQ. The antidepressant effect, if there ever was one, is very quickly crushed by the devastating realization that they might have to live with memory loss and cognitive deficit for the rest of their lives. Those for whom the damage does not get repair are forced to accept it and cope with it.
My recovery from ECT was 90% good luck. The brain is a tricky organ indeed. Even now, scientists do not know why some people recover from brain damage from strokes and car accidents, and others do not.
After ECT, as soon as I could, I took up writing obsessively. I have learned that writing, for survivors of ECT, is not only a way to record events. In our desperation to recover our minds, we write to survive.
We write in our hospital rooms, in doctors’ waiting rooms, and into the night and wee hours. We write, often in secret, while our psychiatrists tell each other it is a childish hobby (some even called it pathological). We scribble on anything we can find, with any writing instrument they allow us. “What happened to my brain?”
Over two decades have passed since I had ECT and then, ended up with a mysterious and seemingly unsolvable “mental illness.” Since then, I returned to college to finish my undergraduate degree and have gone and finished graduate school. My field of study? Creative writing.
I still write to survive. My sense of urgency as a writer has never left me. As a writer, to me, my duty to share my story with others is sacred indeed. I write, so that others may learn from my words. We must tell these stories to end atrocities like ECT.
Freedom now has a new meaning for me. It doesn’t only mean freedom from the oppression my people endured in Egypt, long ago, or the more recent acts of genocide by the Nazis. It has a broader meaning. Now that I have left psychiatry and the entire mental health system behind, I have gained many freedoms. Most importantly, I have gained back the freedom to think, believe, feel, and be who I am.