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.

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A self-portrait of the author’s mother in 1978, before she suffered a brain aneurysm. (Photograph courtesy of Ethan Gilsdorf)

This is my last good memory: Mom in her element, holding court at her infamous Friday Afternoon Club. Her tall glass brims with cheap wine. A cigarette dangles from her lips. At 38, she is surrounded by friends, and above the din of the gathering, I can hear her tell yet another funny story, her machine-gun patter punctuated by her unmistakable giggle.

The memory is from the summer of 1978, just before my 12th birthday. That year, Mom helped coach my Little League team. She taught me how to develop black-and-white 35mm film. She showed me how to stand in the garden and eat tomatoes off the vine with a salt shaker in my hand.

All summer long she had been complaining of blinding headaches. But her doctor wasn’t worried, so she told me not to be. “Come here, pumpkin,” she would say. “It’ll be okay.” I could smell her coffee breath when she kissed me on the forehead.

That September, she sent me and my brother and sister to live with our father while she drove her canary-yellow Saab from our home in New Hampshire to Cambridge to get a master’s degree at Harvard. She took all of herself—all that was Sara Gilsdorf—with her.

The woman who came back six months later was someone else.

In Cambridge, catastrophe struck. A blood vessel burst inside her brain—an aneurysm. The new Mom, back from Massachusetts General Hospital, felt unrecognizable to me: partially paralyzed on her left side, her left arm and hand curled into her chest. Her personality had been profoundly altered. She guarded the kitchen, which became her realm of television, cigarettes, and bizarre, inappropriately sexual questions. Her semi-vacant stare either froze me or turned me to stone. A blue-gray cloud of smoke covered her tracks and movements. She put her clothes on backward. She made me touch the hole in her head. I believed she could see me in the dark; I thought she could even cast spells.

My worst bad memory? Her voice rattling through the house. “Ethan? Adam! Jessicaaa?” When I heard that, I knew she might be half-dressed in her bed, or fallen on the floor, or, more mortifying for a teenage son, naked in the bathtub, or on the toilet. “I am the mother!” she insisted to us. But I couldn’t trust her judgment on much of anything. I called her the Momster.

That is how I remember it. It’s fair to say that everything that has since happened to me has been shaped by this disaster of my childhood. It would have been easier for me to adapt to a purely physical change in her. But how could I understand the murkier damage to her speech, behavior, and perception? I’ve written about what happened to my mother that year, or tried to, many times—in high school essays, in college short stories, in grad school poems, even in the introduction to my book about Dungeons & Dragons and fantasy worlds. But the truth is, I’ve never fully understood what happened to her—what happened in her brain. I could never fathom where her old personality went when her mind was flooded with blood.

My mother finally died in 1997, at the age of 57, after a long, slow decline and nine years in a nursing home. Some time after her death, I obtained her medical records, and added them to the personal psycho-archeological archive that I’d been collecting: stacks of bereavement cards and letters, pages of journal entries made by visitors to her nursing home, piles of bank statements and checkbook registers, and any scrap of paper I could find riddled with her crooked, childlike script. I never had the courage to spelunk into those depths. So I put them away.

This winter I dragged the “Mom Box” out of my closet. I don’t know why. Maybe it was because I was getting married, and her absence had once again become more present in my life. Brain science had changed since 1978; maybe I could finally make sense of what befell her, what befell me. With my mother’s files spread out around me like holy texts, and the winter’s snowstorms promising a fresh start, I went looking for her one more time.

 

“Unfortunately, your mom was basically hit by lightning,” the doctor told me. Robert Crowell had been my mother’s neurosurgeon. I found his name on her operative report, and tracked him down. On the phone, I could hear him riffling through copies of the records I’d sent him. I was speaking to the guy who had poked around inside my mother’s brain.

“Well, let’s say that the management of aneurysms has changed significantly over the course of time,” Crowell said. When my mother arrived at MGH and Crowell first examined her, the damage was already obvious: She couldn’t grip with her left hand, and had no muscle tone in the leg on that side. One of her pupils was bigger than the other. She lay quietly in her bed with her head and eyes turned to the right. Amazingly, she was able to speak. “Do you have a headache?” a nurse asked her. “It’s much better today than yesterday,” she replied.

Today, surgeons would operate within the first three days of a ruptured aneurysm. In the 1970s, they thought it best to wait for any swelling to subside before attempting surgery. So for nearly a month, my mother was kept in a dark room at Cambridge Hospital before being transferred to Mass General.

Finally, five days after her admission to MGH, Crowell performed her craniotomy, cutting out and setting aside a portion of her skull. The hemorrhage in her brain had caused spinal fluid to build up inside the membrane that surrounds the brain, but the damage to the gray matter was so old at that point that it no longer looked red: “It was more like purplish material, and firm.” A piece of my mom’s brain had died.

What had lived in that piece of gray matter was the part of her that could hold an idea in the present and project it into the future and the past. She lost her executive skills—sequencing and organizing; focusing attention; task switching; reasoning and problem-solving; meeting goals and modifying behavior on the fly in light of new information. She mostly lived in a continuous wash of the present. She couldn’t drive a car. Couldn’t cook one of her epic Mexican meals. Couldn’t plant a garden in May, because she couldn’t imagine tomatoes in August. She could barely tell the time of day, let alone the date. She would never hold a job again.

Using a loupe like a jeweler, Crowell had followed the burst blood vessel back to the main artery; there, he clipped it with what “looks like a tiny clothespin,” he told me. The operation lasted from 10:45 a.m. to 8 p.m. Afterward, Crowell noted my mom’s “good preservation of verbal skills.” Lingering issues included “problems sustaining mental activity,” and “current active reasoning and judgment.” Was she aware of what had happened to her? She never spoke of it to me. During my visits with her, especially in the nursing home, our conversations were nonlinear, jumping around in time. In the 19 years after she survived the aneurysm, I never asked her what it felt like to lose that much of herself.

“I’m sorry we couldn’t save your mom,” Crowell told me now. “The damage was severe. And it predated anything we could do to fix or prevent it.”

Strange. He had saved her life, but he was apologizing to me as if she had died on his operating table 37 years ago.

  • 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.