The Day My Mother Became a Stranger

After a sudden aneurysm, Ethan Gilsdorf’s mother was transformed. Almost 37 years later, the author searches for answers.

Here was our family joke: that before Dr. Crowell had replaced that chunk of Mom’s skull and sewed it back in place, he’d accidentally let two chipmunks in—a Chip and Dale duo whose endless chatter drove Mom nuts. The story became a kid-friendly way to explain what had made our mother loopy.

“Mom, how are the chipmunks today?” my brother, sister, or I would ask when we visited her at MGH during the winter of 1978–1979.

“Pretty quiet,” she’d reply, with a chuckle. Her head was half-shaved then. Red, swollen stitches ran down the bare skin, like a newly minted baseball. Our jesting became more elaborate over time: During Mom’s repeated trips to the hospital, the chipmunks were seen on the MRI to be protesting, just as Mom protested against the proposed Seabrook, New Hampshire, nuclear power plant with the Clamshell Alliance back in the 1970s.

“What did the signs say?” we’d ask, when she’d returned from Radiology.

“No nukes!” would be Mom’s reply, and we’d all laugh, trying to keep her spirits up.

“Oh, Sara,” one of my mom’s friends would sigh. “Oh, Sara.”

I don’t remember if the chipmunks squatting in her brain had been Mom’s kooky idea, one of her female pal’s, or ours, or how much of it she believed. But over the years, the rodents got louder. Her monotone and her laugh—“Har har har!”—sometimes became unbearable. After one drink, it got worse. “Get me a fucking scotch,” she might bark at a waitress when one of us was brave enough to take her out for dinner. What would she say next? Mom might attempt to tell a joke. Or we might have to wait…for the word…to come around on her “Rolodex,” as we called her faulty memory. I’d picture her good hand flipping through a card catalog of words, ideas, anecdotes.

“Where are you?” one of us asked, trying to orient her. “In a place of torture where you put me,” she replied.

“Your visits and conversations are more like inquisitions,” she said another time.

One night, back when I was in high school and Mom still lived at home with us and a family friend who was our guardian, she had a life-threatening seizure—the first of many. I remember her calling out, in a quiet voice, “Someone. Help.” We all ran into her room. She was in bed, her whole body convulsing, as if pummeled by a wave. Her eyes wide open. Her face washed with confusion. She looked terrified: “Help me.”

As a child, and later as an adult, I felt embarrassed that she was not whole. It took me decades to see that I was devastated and angry that she’d abandoned me.

 

What is a self? Is it behavior, or memory? How a person conducts herself, or the preferences she expresses? In my mother’s case, I wondered if it was her behavior that had been warped, or her personality—or something more intangible that had been disrupted, like a once-strong signal that was now being received only faintly, and fuzzily, by the rabbit-ear-and-tin-foil antenna of her soul.
But if changes in personality could be explained by her brain damage, is personality localized in the brain? “Most of us share a strong intuition that our own self is an irreducible whole, that there must be some place in our brains where our perceptions and thoughts all come together and where our future actions are decided,” I read in the journal Nature Neuroscience. “Yet this view is now known to be incorrect—different mental processes are mediated by different brain regions, and there is nothing to suggest the existence of any central controller.”

The more I asked if specific regions of the brain can be linked to emotion and personality, the more confusing the answers became. “I would not say there is one little Lego piece of the brain that is for the personality,” Sabina Berretta, scientific director of the Harvard Brain Tissue Resource Center, told me. “But there is absolutely no doubt that changes in the brain can result in personality change.” Her colleague, T. Wilson Woo, the facility’s medical director, used a different metaphor: music. Just as dropping a single note can change a melody, the loss of only a few groups of neurons can change a personality.

“Let’s say in the case of your mother, one or two of these notes were damaged,” Woo said. “After losing those two notes, it changes the entire connectivity of the architecture.” In my mother’s case, Woo continued, “you do see a set of very well-defined symptoms—loss of inhibition, loss of self-control. But that’s not specific to one brain region, per se.”

You can open the skull and poke certain parts of the brain. People will laugh or cry. But that’s not personality. That’s just a reflex, like a hammer-whack to the knee.

The problem is that my mom’s personality—anyone’s personality—is more than the sum of its parts. If you took out one note from a symphony, it would still be recognizable. What if you cut a whole measure? What if you took out the horn section? The kettledrums? What if you switched conductors? If my mom had been able to keep a few million more neurons, would I have recognized her?

“Did your mother hallucinate?” Allan Ropper asks me. Ropper is executive vice chair of neurology at Brigham and Women’s Hospital, and professor of neurology at the Harvard Medical School. I’ve come to him for help understanding the last parts of my mother’s diagnosis: the temporal lobe epilepsy that over the years slowly shrank what was left of her cognition.

Mom did hallucinate, I tell him. During a two-week stay at MGH after her first seizure, medical staff remarked on her cursing; her periods of confusion, disorientation, and paranoia; and her tactile, visual, and olfactory hallucinations, from smelling garlic to seeing “terrifying” red and green flashing lights.

Hallucinations, bizarre ideas, delusions—all of this is common with temporal lobe epilepsy, Ropper tells me: “The temporal lobe is the area of the internal mental conversation and the internal mental life.” He hypothesizes that more strokes had occurred in her frontal lobes due to a spasming blood vessel, a little-understood byproduct of her aneurysm that in my mother’s case destroyed even more brain tissue. Associated with this is a loss of “executive behavior,” he says, “the ability to sequence and organize things.”

Finally I ask him the one thing that has been eating at me: Had any of his patients ever returned to who they had been before their injury? “That would be unusual,” he says. “The majority of people are badly off and stay that way. Some get worse. At a certain point, their life becomes dissolved. Their spouses leave them. They’re institutionalized.” Like my mom was. At least I know now that there’s nothing more we could have done for her. Her old self could never have been rescued or repaired.

It wasn’t until I was back home, pawing through the strewn papers and notebooks that now covered my desk, the floor, the couch, and sat in piles and boxes on the floor of my office, that I saw Ropper’s name in my mom’s file. Ropper had been an attending physician in MGH’s ICU. He had seen my mother in the hospital, briefly, in 1980, for one visit only. “Case reviewed at length,” he wrote. He noted her major problems as “ peculiar temporal lobe seizures,” “visuo-spatial disorientation,” and “personality changes.”

The coincidence astounded me. Of course, now, Ropper didn’t remember my mother. But why would he? Her case was ages ago, and her symptoms, while so overwhelming for us, were nothing unusual for him, I imagined. She was just another patient out of so many, another lost woman whose family was struggling to adjust.

 

For me, my mom’s aneurysm had been in many ways a fate worse than her death. If she had died in the operating room back in 1978, I would have been heartbroken, but I would have moved on. Instead, I slowly abandoned her, or the half-present version of her. Her unpredictability drove me away.

Sometimes she was “there,” cracking jokes, engaged in conversation, calling to share a Julia Child recipe with me, or asking me when I was going to get married—being appropriate, and otherwise normal. But sometimes not. Reconciling the two over the years has been a shattering emotional chore for me.

I sat awake one night, alone in my office, surrounded by papers. Snippets of Mom’s post-trauma personality lived among that written body of evidence haunting my office. Tucked in the crevices of her medical record, her nurses, doctors, and psychiatrists recorded the various things she said over the years. Family and friends were encouraged to write impressions of their visits with Mom in various journals and log books kept in her nursing-home room.

Some entries read as if she was trapped in some avant-garde Samuel Beckett play or existential tract by Sartre or Camus:

Nurse: Would you like to use the commode?
Sara: I think I would like to dance.

Visitor: Do you know where you are?
Sara: At the center.
Visitor: What center?
Sara: The center of the universe.

Doctor: What’s your name?
Sara: Puddin’ Tain. Ask me again and I’ll tell you the same!

But then I found a yellowing sheet of paper from an earlier time, back when Mom still lived with us, just a couple of years out of the hospital and trying to care for her children. A friend had taken her out to dinner, and she’d left a note for us kids, saying which restaurant she’d gone to and instructing us what to eat for dinner.

The note starts out flush with the left margin but trails over to the right side; she’d lost the left half of her spatial field. At the bottom, she scribbled a cartoon of herself—actually, not a bad drawing—a half mom, half monster, with pointed ears and a dragonlike tail. A cartoon speech balloon trails out of its distorted mouth: “Momsie Dear Speaks!”

Delving deeper into her records, I saw that during her initial MGH stay in 1978, a psychiatrist who examined Mom noted she was “profoundly aware of her impairment in cognitive functions as well as motor functions” and this was causing her “stress and depression.” A couple of years later, on November 24, 1980, a doctor asked my mom how she’d been faring overall since her recovery from her aneurysm and stroke. “I had difficulty reading the phone book let alone attend Harvard,” were her own words. Her learning and intellectual deficits were a source of great anguish, the doctor said. “I have functioned at existence level [since the stroke]. The only realities are TV and cigarettes.” She frequently contemplated suicide, she said, only, “I don’t have the courage to do it.”

This was not the voice of the mother I had remembered. But it was someone—a new individual and unique person. A person with my mother’s tenacity, stubbornness, and self-awareness.

My trauma had been the unreliable narrator of my mother’s story. My mother was not entirely gone, or replaced. But as a kid, I had been so terrified by the changes in her—I’d put up a wall so tall and thick—I could not see the parts of her that were still there.

During my last foray into the snow banks of the Mom Box, I found an envelope she had mailed to me in 1988, on the day before my 22nd birthday. Inside, a joke card: “Money’s tight, times are hard…. Here’s your fucking birthday card.” And then, scrawled on the back, in ballpoint, in her unmistakable, childlike script:

Dear Ethtan. [sic]
*But you know
the endless love
I feel for you
Hugs & kisses
the Mother

  • Linda Button

    Ethan, you have captured the tortuous, heartbreaking experience when a person you love has their mind break apart. Thank you for braving the memories and getting the medical insights. Can’t wait to read your book.

  • Jill Davidson

    I want to thank you for all of your indepth work. I will save this article and reread it many times, I’m sure. I am the child that you are writing about, and my mother is now 89 years old. Three siblings were devastated by my mothers change and walked away. I have dedicated my entire adult life to taking care of my mother. I know that my whole life has been directed down a different path, due to my mothers illness. This article said so much, that I have never admitted. I kept all of the emotion in the box. Thank you so much for sharing your journey.Jill Davidson

  • Ann Marie

    Ethan – What a brave and beautiful piece.

  • Karen Kilbane

    Wow. You have articulated a somewhat rare experience not often described in such detail. To have been raised for so long with a dynamic and functional mother and then to have experienced her extreme personality change must have been overwhelmingly confusing for a young adolescent. As an adult you have perspective and knowledge about the human brain. As a young teen you don’t, yet you had to make sense of your mother’s brain and personality however you were able to at the time; to me this is a double bind situation. Kudos to you for writing this fascinating yet difficult to fathom essay.

  • Fae Ylvi

    Ann Marie…same thoughts. Love to you Ethan <3

  • https://www.youtube.com/watch?v=0B6TKClPFQA susanmc

    Poignant, beyond words.

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  • Ethan Gilsdorf

    Thank you all for your kind comments. Having a reader take the time to write in means all the world to me. It’s why we writers write. [ps– and that the story is inspiring some non-sequitur spam is hilarious.]

  • Kathleen Sullivan

    Ethan – I am so so sorry for your loss. You are a brave soul for telling your story.

  • MichelleRafter

    A beautiful, well-written example of a reported essay. Textbook perfect in execution because it is so deeply personal yet well-organized with all essential parts attended too, and above, all shares universal truths. That makes it sound too clinical, which it is not. Bravo.

  • http://www.colleenfriesen.com/blog Colleen Friesen

    Beautiful and heartbreaking. Thank you for such a vivid portrait of your mother and this crazy making situation that you’ve not only survived, but transformed into art.

  • rs986

    This is just a fabulous essay. Thank you so much for writing it. And best of luck with your upcoming marriage!

  • Laurie Fitzpatrick

    Beautiful essay, Ethan. My niece, in her mid 30s, has just had an operation to relieve pressure on her brain from bleeding so, of course, when I saw (in a Grub Street newsletter) you had written this story, I had to read it. We all need so much courage, don’t we?! To live, to write…. Thank you.

  • http://www.juliegreene.name/ Julie Greene

    Ethan I remember a hospital roommate I had for a long time named Dale. I don’t recall her last name. Dale, if you or your family are reading this right now please know that I saw you as an immensely caring person, and you have a good heart. Same thing happened to Dale. I think she was around 30. She had two kids, a boy and a girl. Her husband seemed devoted. She spent six months on a community hospital psych ward in Vermont, which was where I met her in 1983. Then, they transferred her to Brattleboro Retreat. I visited her there a number of times and enjoyed spending time with her. I believe she was lonely there and wanted to be back with her kids. I didn’t like the attitude of the doctors there. I even heard one of them call her “hopalong.” That was so offensive. If she had heard it, it would have been hard for her to express her outrage. Her vocabulary was limited to maybe 20 words, After all that I moved away and never saw her again. I often wondered what she was doing or if the made it home. I love Dale very much and I think of her often.