THE FIRST TIME WE MET, right after we shook hands, a patient told me that the main thing I needed to know about her was that when she was 10 years old, her father died of pancreatic cancer. She wasn’t worried that she would inherit her father’s fatal disease, but she saw it as a powerful legacy nonetheless: she traced her anxiety, her resilience, and even her choice of men — she favored older, daddy types — to her father’s illness.
Doctors take a narrow view of what we call “family history.” When we ask patients what diseases their relatives had, we’re mostly interested in conditions for which a “positive family history” puts them at increased risk: genetic disorders like muscular dystrophy and Huntington’s disease, and more common conditions often passed from one generation to the next: diabetes and atherosclerosis; cancers of the breast, colon, ovary, and prostate; depression and alcoholism. We’re less concerned about diagnoses that don’t tend to run in families, and may not even bother recording those that have afflicted people close to the patient but not related to him or her by blood: a spouse, stepparent, or adopted sibling.
In recent years, our concept of how illnesses are inherited has expanded. The new field of epigenetics explores the ways people’s experiences and exposure to environmental factors affect their health, as well as their children’s and grandchildren’s, on a cellular level. One study found a higher incidence of stress-related disorders among the offspring of Holocaust survivors and, more remarkably, demonstrated corresponding mutations in their chromosomes.
I’ve wondered, though, whether we still underestimate how profoundly one person’s health can affect the wellbeing of future generations, in forms undetectable by the X-ray, microscope, or analyst’s couch. How illness and trauma can derail a family’s story such that it may take generations to set it right.
“This is the story of a family who made mistakes,” begins White Matter, a beautiful, moving, and thought-provoking new book by poet, memoirist, and photographer Janet Sternburg, The mistake to which Sternburg refers is the decision, by her mother and aunts, to allow doctors to perform lobotomies on two of their siblings — their brother Bennie in 1940, and their sister Francie a few years later. Embedded in the declarative statement with which Sternburg opens her memoir are questions: Why did they make these mistakes? How could Sternburg’s mother and aunts have subjected the brother and sister they loved to such brutality? What kind of love is that?
Sternburg looks for answers both within her family and in the history of lobotomy itself. But White Matter isn’t a conventional hybrid memoir in which a personal story and its larger context appear in alternating chapters, or in paragraphs separated by space breaks. In White Matter there is no “background material.” The subtitle of Sternburg’s book, “A Memoir of Family and Medicine,” signals that the story of Sternburg’s family is inextricable from the story of lobotomy.
It’s difficult today to think of lobotomy as surgery, and not torture. After hesitating for a moment before describing the procedure, Sternburg reminds herself that most of her family is long dead. “I have no reason to spare anyone,” she reasons. “I am writing a story that I haven’t faced for many years.” Despite her own squeamishness — and, presumably, her readers’ — she forges ahead:
Here is what was done to Bennie: holes were drilled in his skull; the blade of an instrument was inserted through the holes, its handle swung as far and deep as possible.
In a later version of the procedure, the ice pick lobotomy, surgeons inserted the instrument through the eye socket directly into the frontal lobes. The procedure could be done in as little as 12 minutes. One doctor performed lobotomies throughout the countryside in an operating room on wheels — a lobotomobile.
Lobotomy was conceived in the 1930s by doctors who observed that people who had suffered damage to the frontal lobes became docile. If a lobotomized person had violent or sexual thoughts, he or she didn’t act on them. Lobotomy, also called “frontal lobe castration,” disconnects the frontal cortex, responsible for our ability to think and plan, from the limbic system, in which feeling and memory reside. In one of several haunting photographs in White Matter, Bennie and Francie sit side by side at a family wedding or bar mitzvah post-lobotomy, all dressed up, staring over their champagne glasses into nothingness; zombies at the banquet table.
In the 1940s and 1950s, doctors performed tens of thousands of lobotomies on people with schizophrenia, depression, anxiety, and intellectual disability, plus many simply considered too difficult to deal with. It was used in attempts to “cure” homosexuality, and, in the Soviet Union and elsewhere, to silence political dissidents. The most famous lobotomy patient was President Kennedy’s sister, Rosemary. Others included Allen Ginsberg’s mother, for whom he wrote “Kaddish,” and Tennessee Williams’s sister, on whom he based the emotionally fragile character Laura in A Glass Menagerie. When antipsychotic drugs became available in the 1950s, lobotomy lost favor, and by 1970 it was illegal throughout much of the world. By 1975, when the character played by Jack Nicholson in One Flew Over the Cuckoo’s Nest received a lobotomy as punishment for rebellious behavior in a mental hospital, many filmgoers wondered how such savagery had ever been accepted medical practice.
But there were reasons why lobotomy was accepted and why Sternburg’s family assented to the procedure. In fact, Sternburg brings to White Matter admirable open-mindedness about arguments in support of lobotomy; arguments whose validity she’s long discounted and which led to decisions by which she, herself, has been wounded.
Sternburg points out that lobotomy arose at a very particular point in medical and cultural history. In the 1930s, scientists who espoused the biological approach to psychiatry — which prevails today — were just beginning to challenge the Freudians. “Psychosurgery,” as lobotomy was sometimes called, seemed a logical therapeutic extension of the new approach. Sternburg explains: “Even though the operation is viewed with horror, it was also a creative leap into the understanding of mental illness, surmising that it was a problem with communication between areas of the brain.”
Portuguese neurologist Egas Moniz won the 1949 Nobel Prize in Medicine for his research on lobotomy (though human rights activists have petitioned to have his award posthumously rescinded).
Sternburg notes that these scientific developments occurred in the years after World War II. After the defeat of fascism, lobotomy, as its proponents represented it, was in sync with the national mood:
Free — that was the rhetoric of lobotomy; it frees the patient, it frees the family. Freedom from constraint placed lobotomy firmly within the ideology of post-war America: with effort and ingenuity, we can be freed of anything that stands in our way.
In the first half of the 20th century, widespread interest in eugenics — the belief that the human population should be cleansed of “inferior” genes, by forced sterilization, if necessary — also fueled the popularity of lobotomy. “[If] some people were not good enough to exist,” Sternburg writes, “there was no reason not to experiment on them.”
In the 1940s a major opponent of eugenics, but an advocate of lobotomy, was Abraham Meyerson, a professor of psychiatry at Harvard Medical School and a friend of Sternburg’s great-uncle. The family consulted Meyerson when Bennie, at 14, began exhibiting erratic and violent behavior, threatening his sisters with a knife and dropping a neighbor’s cat from a roof. Meyerson prescribed lobotomy for Bennie, as did his colleagues, years later, for Bennie’s sister Francie, when she began hallucinating and attempted suicide after her marriage ended.
Because their volatile father had abandoned the family years earlier, and their mother was paralyzed by grief — when she saw Bennie in a mental hospital she howled “like a wolf in a Russian novel” — the decision to consent to Bennie’s lobotomy was left to his sisters: young, terrified working-class Jewish women, ill-equipped to contradict a prominent (Jewish, male) Harvard doctor:
In their twenties and mid-thirties, my mother and aunts were caught in something they couldn’t fully comprehend, invented by men far away from them in geography and status, hampered in their decision by believing they weren’t good enough. They brought to the decision all the tangled strands of their lives — the fear that had begun in their childhoods and had never left them, their awe of people they saw as “higher,” their sense of responsibility, and their yearning for something they’d never known — a normal life, or at least their image of it.
The sisters’ family and social circumstances, their acquaintance with Meyerson, and the medical and cultural milieu in which their siblings fell ill all conspired to make lobotomy seem an inevitable choice — validated, to some extent, even decades later when one of Sternburg’s elderly aunts plaintively summed up the aftereffects of Bennie’s surgery on the family: “We weren’t scared anymore.”
Sternburg recounts her aunts and mother’s decision sympathetically, but not uncritically:
These events, these people I grew up with, seemed an ordinary part of my life. A child says to herself, “This is how they were, this is how they had to be.” Later, an adult questions whether anything has to be.
An adult — and a memoirist, she might have written. At various points in White Matter, Sternburg envisions alternate paths her family might have taken. When reflecting, incredulously, on the decision to lobotomize a second sibling, Sternburg spins an elaborate fantasy in which she transports herself into the past and rents a little beach cottage where she lives companionably with her wailing, psychotic aunt, protecting her from lobotomy.
Part of Sternburg’s wish to revise the past is that she’d like to have spared her mother and aunts the pain of their decision — not to mention her aunt and uncle the horrific outcomes of their lobotomies. But she also wishes the past were different for her own sake. Sternburg’s generation suffered from their parents’ actions. She was an anxious child and a troubled young adult. Her cousin, Dan, became severely depressed as a young man. You might assume that they’d simply inherited their family’s gene for psychological disorders, but Sternburg doesn’t accept this explanation. She writes, without irony, “More than heredity, it was my family that made me afraid.” Her grandfather’s rage, her grandmother’s grief, her aunt’s and uncle’s psychoses, and their siblings’ guilt all formed the family’s identity; a view of themselves as “less than,” inherited by the next generation and causing as much damage as any genetic disease could.
A memoir dealing with heredity deals, by definition, with sex, and Sternburg does not shy away from the subject. She reports that an aunt told her that her maternal grandparents’ miserable marriage was held together only by sexual attraction. She mentions that her parents seemed to have had a healthy physical relationship and reveals that her mom liked to kiss her dad’s bald head and whisper “I love the way you smell” — sweet evidence of parental carnality.
But she also gives several examples of sex gone wrong: her Aunt Jen’s unhappy affairs, the flabby husband with whom, the family speculated, Francie never consummated her marriage (the man’s testicles remained undescended, someone had heard). Like a cursed clan in an ancient tragedy, this family seems stricken with infertility. A list of family members at the beginning of White Matter highlights the fact that — during the postwar baby boom, no less — Sternburg’s mother and her five siblings produced only four children among them.
Of these four, three became writers. Though Sternburg fears she inherited a gene for mental illness, early on in the book she mentions that an aunt remarked that what she’d really inherited was “the writing gene.” As a “preternaturally interested child” — and what writer wasn’t? — Sternburg has a sensation she calls “THE FEELING,” intense flashes of awareness that she mistakes for symptoms of insanity. She worries she’ll need a lobotomy herself, one day. But she comes to see that THE FEELING “belonged not to pathology, but to poetry.” On one occasion, she assuages her fear of Bennie by associating him, creepy and larger than life, with Swift’s Gulliver:
I was beginning to realize I had a kind of power. I could make a connection between a character in a storybook and my scary uncle, and then to a story I could write myself one day. I could turn my fate to something other than sickness.
While working on this essay, I took several long walks during which my brain got unstuck. My scattered feelings about White Matter organized themselves into sentences. And that self-critical inner voice (Sternburg’s memoir is so good! Who am I to write about it?) quieted; the writer’s “bad radio station” that Anne Lamott has so aptly dubbed “KFKD” stayed off the air while I hit the trail.
Neuroscientists believe that walking, like meditation, yoga, and, yes, writing can actually restore connection and balance between the frontal cortex and the midbrain, between perception and reaction, thinking and feeling. In other words, these activities reinforce the same neural pathways severed in a lobotomy.
Don’t the best memoirs do the same? Reconnect feeling and language, experience and expression; bridge the space, as Sternburg writes, in this lovely, healing book, “between a memory and a story?” Writing White Matter enables Sternburg to reconceive her family legacy. “I think now that our collective DNA is made up of twisted strands of pathology and creation. One is toxic; the other would save us,” she writes, midway through the memoir. She underscores this “other,” more salutary strand — writing — by including, at the end, words composed by Bennie, himself, who scrawled a short note to Sternburg when she was a child, expressing his hope that “we will all be together again.”
In White Matter, they are.
Suzanne Koven is a primary care physician and writer in residence in the Division of General Internal Medicine at Massachusetts General Hospital in Boston.