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.

By Ethan Gilsdorf             |
Boston Magazine          | May 2015

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.

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][1]

*But you know

the
endless love

I feel
for you

Hugs
& kisses

the
Mother

[1]
The daughter (and writer) is Ethan Gilsdorf.