My great-grandmother’s struggle with mental illness — and the therapy that saved her life

At the age of 44, my great-grandmother Carmela became convinced that people were out to get her.

She refused to let anyone visit her house in Modesto, California, where she lived with her husband, two children, and sister-in-law. She insisted that all the windows and curtains be closed. She had hallucinations and manic episodes. Sometimes she would rush out of the house into the street for no reason, and her children would have to chase her and bring her back home.

As her mental health deteriorated over a few months in 1953, Carmela even tried to strangle her 23-year-old daughter, Beatrice (my grandmother), according to two relatives. “She was really out her mind, basically,” my aunt Rochelle told me. She had heard the stories from Beatrice, her mother.

Treatment for mental illness in those days was fairly limited, but the family doctor suggested that she try a revolutionary new method: “shock therapy,” or electroconvulsive therapy (ECT), which involves using electricity to induce a seizure in the brain. For some patients with mental illness, it makes their symptoms decrease or go away entirely — though doctors don’t completely understand why. It’s one of the most controversial treatments for mental disorders.

Much of Carmela’s large, close-knit Italian American family objected to the treatment — it sounded horrific. But her daughter was adamant that something had to change. Carmela underwent ECT several times over a few weeks.

To everyone’s surprise, it seemed to work. My great-grandmother’s manic behavior stopped, and as far as we know, she never threatened her daughter again.

Courtesy of Carmel Underwood

Carmela ended up living well into her 80s. The woman I got to know as a child was tough and funny, with an acerbic wit. She was short, with a distinct accent that belied her Italian immigrant roots, and had a particular love for cigarettes and coffee. Carmela also loved to gamble; during vacations to Lake Tahoe in the summers, she would sometimes stay out all night at the casino, where the pit bosses called her “Mamma.” She taught her granddaughters how to play blackjack.

As far as I know, she never displayed any mania or paranoia after her experience with ECT.

I’ve been thinking about Carmela’s experience lately, in light of the growing public awareness of mental illness, and depression in particular.

Celebrities like Kitty Dukakis and Carrie Fisher have come out loudly in favor of ECT, which research shows can work well for people experiencing severe, treatment-resistant depression. Esketamine, a fast-working drug that’s similar to the hallucinogenic club drug Special K, was recently approved by the Food and Drug Administration and seems to hold promise for people with this type of disease. And brain stimulation treatments like tDCS, or transcranial direct-current stimulation, are getting a lot of press as well.

But even though most psychiatrists now believe that ECT is an effective treatment for severe depression, it’s still the object of suspicion. This is due in part to the early methods of administering the treatment, which were, by all accounts, barbaric, and which still reverberate in our cultural consciousness. But it’s also due to two other factors: One bout of ECT is rarely enough to help people control their symptoms — and there’s a really good chance that it will cause some level of temporary, or long-term, memory loss.

Still, tens of thousands of Americans allow doctors to apply electricity to their brains every year. I wanted to know more about this treatment that helped my great-grandmother, and whether the debate today over ECT was well-founded — or if it’s keeping people from getting treatment that could potentially save their lives.

A mysterious illness and “shock treatment”

It’s difficult to know exactly what happened nearly 70 years ago when Carmela had ECT. Most of my relatives who were alive at the time have died, and her medical records are long gone. After speaking to three relatives who were alive at the time and two others who have heard stories secondhand, here’s what I’ve managed to piece together.

Carmela, the eldest of nine siblings, was born in 1909 in a small village near Bari, a port city in southern Italy. According to family lore, Carmela’s father, Angelo, was a soldier in World War I; when he returned home, his teenage half-brother was playing with his gun and accidentally shot and killed a neighborhood girl. Angelo took the fall for the crime and went to prison, and the family went to great expense to hire a lawyer to get him out. The lawyer told Angelo that he would need to leave town if he ever wanted to find work again, so the family decided to try their luck in the US. They immigrated to the US by ship when Carmela was 11.

It was a harrowing trip, and Carmela’s infant brother Saverio (whom they called Sam) died before they reached Ellis Island. A second brother whom the family also named Sam was born in the US, but he died at a young age as well after being hit by a car. A third brother named Sam survived, however, and is still alive today.

Carmela’s family moved to Chicago, where she started working at age 12, making pasta by hand and selling it to restaurants to help the family make ends meet. At 13, she moved on to working in a department store. (We don’t know if she ever had formal schooling, though she did learn to read and took classes before getting her US citizenship.)

The cold Chicago winters soon drove her family to California. It was there that Carmela had an arranged marriage at age 17 to a man who’d immigrated to the US from an Italian village near where her family was from. He was 10 years her senior. They married on February 27, 1927, in Oakland.

Courtesy of Carmel Underwood

My great-grandparents settled in the Central Valley and started growing peaches and wine grapes from the rich brown California soil. Carmela’s first child died at 3 months old due to something the family referred to as “crib death,” but she had two other children who survived. She taught herself to drive on the ranch, in order to gain some freedom. After years of living in a Chicago basement apartment surrounded by family, her time out on a farm with a man who was much older than her was difficult and isolating, her niece, who visited her often at the time, told me.

In late 1953, something changed. Carmela developed a strong sense of paranoia and began acting oddly.

“She was delusional, she was hallucinating, seeing things that weren’t there, people that were after her,” my aunt told me. “Running around in the house, opening up and closing doors.”

“She was afraid of everything,” Carmela’s sister-in-law said. “She would get really bad, and just tear out of the house and do crazy things.”

Carmela’s husband was traveling a lot during this period, hauling wine grapes by train to Chicago to sell, and battling diabetes, a disease that eventually killed him. I don’t know how he responded to his wife’s illness.

But my living relatives have a variety of explanations for her behavior. She was unhappy in her marriage, a cousin told me. Another person attributed her strange behavior to thyroid issues. At the time, much of Carmela’s family thought she was just “going through the change,” i.e., menopause. They also described her as “nervous,” which was used to apply to all kinds of unnamed mental illnesses at that time. (I was not able to find records of her diagnosis.)

Whatever the reason, Carmela’s mental state seems to have deteriorated, to the point where her daughter Beatrice felt she had no choice but to take drastic measures.

Against the wishes of some members of the family, Beatrice took her to a clinic that was in either Modesto or the nearby city of Stockton, according to relatives. There, doctors administered ECT. “They would take her away for shock treatments, and when she came back, she was very sweet and nice and calm,” her sister-in-law said.

In the ’50s, ECT was in its heyday in the US, and doctors used it on hundreds of thousands of patients a year. That didn’t make it palatable to the general public, though. Beatrice must have seen the ECT being administered, because she described the treatments, which were followed by ice baths, to relatives as violent and disturbing.

Finally, Carmela was admitted to a hospital in the San Francisco Bay Area, likely in Livermore. She spent several weeks there and was apparently given more ECT.

When she came back, the erratic behavior was gone, and she had recovered from the mania that had plagued her. “She was like she was before, the person we all knew,” Carmela’s sister-in-law said.

There were, however, some serious side effects.

From bludgeon to scalpel

The basic concept underlying ECT is not new; humans have been experimenting with using electricity to cure illness since antiquity. The ancient Romans used electric eels to treat problems like headache and gout.

Doctors attempted to use electricity as a cure for different disorders in the 1700s as well, but the modern-day version of electroconvulsive therapy wasn’t developed until the 1930s.

In 1934, a Hungarian doctor named Ladislas Meduna claimed he’d had much success treating patients with schizophrenia by inducing seizures. Psychiatrists began using injections or administering oral doses of a drug called Metrazol to create seizures in patients with psychosis, Jonathan Sadowsky, a historian of medicine and author of a book about the history of ECT, told me.

But there were a lot of problems with this; the injections could cause severe neurological damage, and the Metrazol often gave patients a feeling of absolute terror before the seizures came on. Doctors sometimes had to chase patients around the room to administer the drug.

The Courier-Journal via The Kentucky Historic Institutions

In 1938, Italian neurologist Ugo Cerletti and his student Lucino Bini developed ECT as an alternative. It was viewed as a much more humane method for helping patients with schizophrenia, and the new treatment quickly caught on in the US.

A 1940 New York Times article with the headline “Insanity Treated by Electric Shock” described the treatment as “safer than injections” and “less expensive and less disagreeable.” Over time, doctors learned that it was more useful for people with other types of illnesses — like severe depression that didn’t respond to other forms of treatment.

But while it was preferable to the chemical alternative, ECT could still be, by many accounts, cruel. The seizures could lead patients to thrash about wildly and even break bones, and was generally an “extremely unpleasant” experience, Sadowsky said.

In 1953, at age 20, the author and poet Sylvia Plath underwent ECT — the same year that my great-grandmother had the treatment. She was experiencing severe depression and suicidal impulses, and was administered the treatment in its crudest form. In her novel The Bell Jar, Plath describes the experience:

Doctor Gordon was unlocking the closet. He dragged out a table on wheels with a machine on it and rolled it behind the head of the bed. The nurse started swabbing my temples with a smelly grease. ... Doctor Gordon was fitting two metal plates on either side of my head. He buckled them into place with a strap that dented my forehead, and gave me a wire to bite. I shut my eyes.

There was a brief silence, like an indrawn breath. Then something bent down and took hold of me and shook me like the end of the world. Whee-ee-ee-ee-ee, it shrilled, through an air crackling with blue light, and with each flash a great jolt drubbed me till I thought my bones would break and the sap would fly out of me like a split plant. I wondered what terrible thing it was I had done.

Later in the 1950s, doctors began administering general anesthesia and giving patients muscle relaxers before the treatment. This much safer method is known as modified ECT and is how it’s still administered today.

Plath had another bout of the treatment, in its modified version, a few months later; a new doctor told her the first round had been done “improperly.” She describes it differently, writing, “the darkness wiped me out like chalk on a blackboard,” and afterward, upon waking, wrote that “all the heat and fear purged itself. I felt surprisingly at peace.”

But those new modifications were not practiced everywhere, and took a while to catch on.

In his 1962 novel One Flew Over the Cuckoo’s Nest, Ken Kesey drew on his experience working at a hospital in California to describe how ECT was used as a disciplinary tool to tame unruly patients at the time. (Sadowsky, the medical historian, confirmed that this did happen, but it’s not clear how often.)

Kesey’s book, in addition to the 1975 film based on it, where Jack Nicholson is shown flailing around wildly in terrible pain while he receives ECT, seemed to have increased fear of and stigma around the treatment.

I still remember watching a scene from the 1985 film Return to Oz, in which Dorothy’s aunt and uncle bring her to a hospital to receive what appears to be a rudimentary version of ECT, apparently because she won’t stop talking about a magical land she claims she visited.

“What are those?” Dorothy asks fearfully about the electrical conductors that the severely dressed nurse is holding. “Oh, when you’re ready we’ll just put them over your ears and pretty soon they’ll draw all those unpleasant dreams out of your head. And when you wake up, you’ll never be bothered by them again,” the doctor says. As a child, I watched this scene and shuddered. At the time, I had no idea that my great-grandmother had probably experienced something similar.

ECT has a controversial past for other reasons too

Other factors have hurt ECT’s image as well. One is the gender concern, given that the majority (as much as 67 percent) of people treated with ECT are women.

In the 1940s and ’50s, women were often seen as more mentally unstable, and cognitively weaker, than men. They were sometimes diagnosed as “hysterical” and given lobotomies and other forms of now-debunked “treatments” that could function as a type of social control. Some have questioned whether ECT falls into this category as well.

Women are diagnosed more often with depression — so it makes sense that they’d be given ECT more often. But Laura Hirshbein, a clinician and medical historian at the University of Michigan, told me this may be more complicated, since “the way the criteria for depression were developed skewed toward women,” she wrote in an email.

The criteria were based on medication clinical trials in the 1960s and ’70s, and Hirshbein said that more women were used in these trials than men.

“First, individuals with severe substance use problems were excluded (among them a lot of men), and second, there is evidence that women have been more likely to be selected for psychiatric treatments than men. In the past, historians thought this was a way for psychiatrists to exert patriarchal authority,” she said. But current researchers suggest that it could be because “physicians were more sympathetic toward the women in distress in the hospital.”

“I also think,” Hirshbein continued, “that increased sympathy and a desire to help is leading to more women being selected for ECT now.”

In short, a patient’s gender may have played and may still play a role in who’s diagnosed with depression and who receives treatments like ECT.

Though Sadowsky said he didn’t find evidence that ECT was used as a form of social control in regard to women in the 1950s, he did say doctors may have felt freer to use ECT on women during that era because their minds were not valued as highly, say, as a male professional’s. “I think it’s a possibility,” he said. “Did they want to mess with the cognitive abilities of a [male] CEO or attorney? Maybe not.”

David Cooper/Toronto Star via Getty Images

By the time the 1960s rolled around, new antipsychotic drugs and the first round of antidepressants had helped spark the “deinstitutionalization movement,” a concerted effort to move people from mental hospitals into private homes. Distrust in psychiatry grew, and ECT fell out of favor, though there’s no good data on the extent of that.

But by the 1980s, ECT was making its way into mainstream psychiatry again, because many severely depressed people were not responding to medication. Scientific studies of the treatment proliferated as well.

And doctors developed better ways to apply electricity to the brain — such as using electrodes on only one side, instead of both — which reduced cognitive side effects like memory loss. They also started using brief-pulse ECT instead of sine-wave ECT, which used the type of electricity that comes out of a regular socket.

As psychiatrists developed a better understanding of different types of depression, it became clear that where antidepressants failed, ECT could help.

An electrical storm in the brain

The American Psychiatric Association defines depression as a common, serious illness that has a negative effect on how a person feels, thinks, and acts, and causes feelings of sadness.

There are various types, like major depressive disorder (which can be mild, moderate, or severe) and secondary depression, which results from another underlying medical problem.

No one knows exactly what causes depression, but it has been linked to brain chemistry, genetic makeup, personality, and environmental factors, like violence or abuse.

And the problem isn’t going away — experts told me that the number of people diagnosed with depression has very likely increased since the 1950s. I wasn’t able to find definitive data, though I did find one study showing that depression rates nearly doubled between 1991 and 2002.

In 2017, more than 17 million American adults had at least one major depressive episode — defined by the National Institute for Mental Health as when feelings of sadness or hopelessness occur for most of the day, every day for at least two weeks, and hinder a person’s ability to work, sleep, study, eat, and enjoy life.

Psychotherapy, including cognitive behavioral therapy, is considered the first line of treatment, but it’s not always successful. Severe depression can be incredibly stubborn, and people with this form of the disease may not respond at all to medications or talk therapy.

This is where ECT comes in.

For some patients who have tried everything else and failed, several experts told me, ECT could very literally save their lives.

Dr. Allen Frances, a professor emeritus and former chair of the psychiatry department at Duke University School of Medicine, believes ECT works for people with severe depression and describes the typical ECT patient as someone close to death’s door.

“They’ve lost an enormous amount of weight. They can’t sleep. They’re enormously agitated. Sometimes they’re kind of paralyzed. They can’t move, they can’t think. They’re subject to delusions. It’s a desperate state of affairs for them. [But] within a few ECT treatments, they’re back to themselves,” Frances said. “It’s a very dramatic improvement, and nothing else works as quickly. If I had severe depression, there’s no doubt in my mind that for me, I would want ECT.”

One of the most well-known advocates of ECT is Kitty Dukakis, the wife of former Massachusetts governor and presidential candidate Michael Dukakis.

Michael Dukakis described to me how for 17 years, beginning in her 40s, Kitty, for no apparent reason, went through recurring cycles of depression. About every eight months, she would fall into a slump, he said. “She had the best care and best doctors and so on and so forth, tried every antidepressant known to man, and nothing worked.” Until she tried ECT.

Kitty said the treatment “worked better than anything else.” She also co-wrote a book about her experience, where she documented her struggle with depression and addiction, and described how ECT helped her feel in control and hopeful. She wrote that it brought her back to being herself — and that it saved her life. “I’ve been very fortunate,” Kitty told me.

After her first round of ECT, she received treatments every eight months, when her depression typically returned. She now has a short treatment about every six weeks, which she said takes about 20 minutes, to keep her symptoms under control. Her doctor calls it maintenance ECT. “I think, partly thanks to her work and the effectiveness of the treatment, it really now has become accepted,” Michael told me.

Doctors still don’t know exactly how ECT works

To get a better sense of how ECT is applied, I visited a clinic at Johns Hopkins Hospital in Baltimore that treats between 10 and 20 patients a day.

The clinic was white and clean, and six gurneys were set up where doctors prep patients by giving them an IV and monitoring their vital signs. After this, the patients are wheeled into a small room, where they receive general anesthesia and a muscle relaxant to avoid full-body convulsions.

The psychiatrist then uses electrodes to administer several quick electrical pulses to the brain, which cause the patient to have one or more grand mal seizures in a controlled, barely noticeable way that might, for example, twitch a toe or finger.

Patients can spend two to three hours in the hospital having their vital signs monitored and being prepped for the treatment, but the actual process takes less than 20 minutes. People generally repeat the procedure several times over a few weeks.

Wikipedia

ECT is most often prescribed these days as a sort of last resort for patients with severe depression; studies have shown that about 58 to 70 percent of patients with depression respond to ECT. It can push patients toward remission and works faster — and in many cases better — than antidepressants.

According to the National Institute of Mental Health, ECT can also be used to treat schizophrenia, bipolar disorder, and catatonia — a condition that can cause patients to freeze, lose their ability to control movement, and stop responding to any kind of stimulus. ECT is also now being used to a limited extent to treat children with severe autism who regularly hurt themselves.

Though various studies indicate that ECT works, researchers still don’t know exactly why.

While visiting Johns Hopkins, I spoke to Dr. Irving Reti, the director of the brain stimulation program and a professor of psychiatry. He’s a soft-spoken man with a barely noticeable Australian accent who has treated thousands of patients with ECT.

Reti’s research focuses on what ECT does to the brain. Based on studies of mice, Reti and other researchers found that brain seizures can create molecular changes, which activate certain genes in the hippocampus, an area of the brain known to regulate emotions and the same area that responds to antidepressant drugs.

Many people have compared ECT to hitting a “reset button” in the brain. The treatment can help people who were previously unable to go about their daily lives be functional again, in a short period of time.

For example, Dukakis wrote in her book that she couldn’t leave the house for months due to her debilitating depression, but the same day that she had ECT, she told her husband she wanted to go out for dinner. “These effects, when they’re triggered by ECT as opposed to medications, are more robust and come on more quickly,” Reti told me.

While most patients don’t experience such dramatic or quick improvement — the effects can take weeks or months to appear — many describe it as transformative, or even miraculous. They say it helped them get their life back.

Given all of this, and given what doctors like Reti and Frances say about ECT, it may be surprising that there’s still a debate about whether it should be used at all.

Critics of ECT are concerned about relapse and memory loss

ECT certainly won’t work for everyone. But there’s a vocal group stringently opposed to its use altogether.

John Read is one of the most well-known critics of ECT. In 2010, the professor of clinical psychology at the University of East London began looking at placebo studies to try to figure out if ECT works. And he found that no study had compared ECT to the placebo effect since 1985.

“There’s pretty much no evidence or no strong evidence that it works short-term except for maybe a small number of people, and there’s no evidence that there’s any benefit beyond the end of the last shock,” he told me.

When I asked about the studies showing that it has helped severely depressed patients, he responded that he thinks it’s mainly the placebo effect. “Any success is short-term; [people] almost definitely relapse within the next three to four weeks,” he told me.

I saw this criticism of ECT echoed elsewhere — it has a high relapse rate, and between 30 and 50 percent of patients see their symptoms return, though it varies in how long this takes. Because of this, many people receive regular treatments or continue taking medication after they have ECT. “Some people will be on maintenance antidepressants after ECT. Others will be on maintenance ECT, which is usually something like one treatment a month,” although this depends a lot on the patient, Frances said.

The other problem that most ECT critics cite is memory loss.

One famous case is the singer-songwriter Townes Van Zandt, who claimed it made him lose all his childhood memories.

Read also said that ECT creates “major memory problems” and causes brain damage. In a January 2019 article in the BMJ called “Should we stop using electroconvulsive therapy?” he argued this point with other professionals who were in favor of the treatment, noting that 29 to 55 percent of patients said they had experienced “persistent or permanent memory loss,” according to a literature review.

Doctors who advocate for ECT say there can be some short-term memory loss, but add that it’s difficult to pinpoint the cause — because severe depression can also cause this to happen.

Jane Rice, who runs a blog called Life After ECT, considers herself a survivor of the treatment, and said that she wants ECT to be banned.

In an email, she told me that she was misdiagnosed as bipolar at a very young age. After a series of drugs, she decided to try ECT, a decision she calls “the worst mistake of my life.”

She received a high number of treatments, roughly 80 of them, between the ages of 17 and 24, and said that they caused brain damage and serious memory loss. When she woke up from one session, Rice said, “it was like someone took my brain apart and put it back together wrong. I couldn’t process my emotions, where I was in space or time, and words disappeared from my mouth before I could say them. I couldn’t do basic tasks like laundry or cooking. Whoever I was before died in that shock clinic.”

Sadowsky, the historian of medicine, thinks memory loss is a big reason many patients don’t want to try ECT. “The side effects of antidepressants are not pleasant, but most people regard severe memory loss as a much bigger risk,” he told me. “People feel, and I think very rightly, that their memories make them who they are.”

Most of the physicians and experts I spoke to who support ECT say it’s plausible that the treatment could be administered incorrectly or to people who don’t have severe depression, causing long-term harm.

But for some patients who are desperate, Frances, Reti, and many others say it’s incredibly useful.

Kitty Dukakis has helped set up support groups for people undergoing ECT in Boston and Seattle. She’s also working on the issue of veteran suicide, she said, and getting ECT to be offered through the VA. “The stigma, it’s probably there but it’s not as bad as it was years ago,” she said.

Researchers are also experimenting with different forms of brain stimulation, to see if they can minimize memory loss.

One type, magnetic seizure therapy, triggers a seizure using magnets instead of electricity. Doctors are also trying out different placements for electrodes to minimize cognitive side effects, Reti told me.

Another type of treatment, tDCS (transcranial direct-current stimulation), uses far less electrical current, and some patients say they’ve had really positive results. Yet many psychiatrists dismiss this type of treatment as still too experimental.

“It’s hard to convey how desperate it is for people who have very severe depression,” Frances told me. “These are not circumstances in which you have the luxury of trying something new that probably is not going to work.”

In search of lost memories

While it seems clear that ECT is a useful tool for some, if the specter of forgetting one’s past didn’t hang over the treatment, I wondered, would it be less vilified, and more frequently used today?

My great-grandmother also experienced memory loss. In February 1954, not long after the ECT treatments ended, Carmela’s daughter Beatrice got married. Though Carmela attended the event as the honored mother of the bride, according to several family members I spoke to, she later said that her memories of this whole time period were fuzzy — and of her daughter’s wedding, she had absolutely no memory at all.

Courtesy of Carmel Underwood

For years, Beatrice feared the long shadow cast by her mother’s mental illness — that she would try to harm her own three daughters when she went through “the change,” and that she, too, would have to undergo some sort of treatment that made her forget happy events, even whole parts of her life. She spoke about it to them often, as a way, perhaps, to ward off the demons that would come for her too.

But in the end, Beatrice never experienced the same mysterious mania that attacked her mother’s brain.

She was always racked with guilt about her decision to give her mother over to the doctors for the new experimental treatment, though. The collective family trauma around this event has outlasted my great-grandmother, and remains today. Some family members didn’t want to talk to me about the experience because, I suspect, it called up too many negative emotions.

However, considering all of this, I’m grateful that my great-grandmother had the treatment, since she survived her battle with mental illness and lived a full, healthy life for many more decades. I wish she were still around today, and that I could talk to her about the experience — what exactly happened so many years ago, and about whether the “shock treatments,” as they called them back then, were worth it. Based on what I know about her life afterward, and the memories we’ve shared, I have to hope they were.

Photo illustrations by Christina Animashaun

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