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| Medieval Brain Surgery |
I imagine that got your attention on a Thursday morning, and I hope the presentation/performance that I'll be doing this afternoon in Tarzana will get some as well. I have the distinct privilege of reading an essay I wrote some years ago to a group of nurses and medical personnel with other mothers in a sort of mini Expressing Motherhood show. Brain Surgery is one of the chapters in my Book That Isn't Yet a Book, and it describes my experience discussing her possible candidacy for brain surgery when she was a baby and just diagnosed with epilepsy. Despite the near twenty years that have passed since that discussion, my feelings about brain surgery are much the same, and while I am, admittedly, distinctly irrational about cutting out a part of someone's brain, believing it to be something that we will perhaps one day look upon as barbaric (as we do lobotomies, let's say, or bloodletting), I understand that the techniques are becoming more and more sophisticated and outcomes more positive. That being said, I'm grateful not to have to make that decision for Sophie and can, instead, stay squirming in philosophical enquiry about it.
Here's the first part of the essay -- given its length, I'll post the rest later this afternoon.
I traveled across the country to Los Angeles
to see Dr. S , a pediatric neurologist known as “the best of the best,” and
when he examined Sophie she was still not a year old. He expressed his dismay
at the relatively poor outlook for infantile spasms, a rare form of epilepsy
that Sophie had recently been diagnosed with in New York City. He recommended that we have a pre-surgical
work-up. (Later, much later, when I had met many parents of children like
Sophie, we would joke about this doctor and call him “Dr. Knife”). He wrote in
his notes, which I still have in Sophie’s medical records file, that Sophie was
“a bright baby of just under one year.” I loved the “bright” part, pulled the
paper out often when I had gone back to New York. That one word sustained me,
sometimes, when I thought I would go wild with uncertainty.
But after that visit with the esteemed neurologist
of the west coast, when I put Sophie into her car seat in the white rental car
that I would drive to the airport to catch our flight back to New York, we were
on the road for less than ten minutes when she began to have what seemed like
hundreds of very small jerking seizures. I was driving on unfamiliar roads, on
the famous Los Angeles freeway, but I was driving with one eye looking in the
rear-view mirror, my lips counting, “one, two, three, four….it’s alright
Sophie, relax, twenty, come on Sophie, relax, fifty…” and so on until her tiny
arms which were methodically straightening, then stiffening, then bending
forward and her head bobbing and her mouth twitching, then grimacing, finally
stopped and she collapsed forward, her head hanging over the five-point harness
of the car seat. She had more seizures in that car ride than I had ever seen up
to that point. With no explanation, and there never was one, I attributed the
episode to her “bright” appraisal of the esteemed doctor and her listening in
as we talked about her condition, her prospects, her brain and the possibility
of surgery. In other words, she knew at
some level what was up and given the sensitivity of her brain, could only
respond to such stress with seizures.
Back in New York City I
made an appointment with our neurologist to discuss the recent visit to Los
Angeles. The day of the appointment, I didn’t have Sophie with me because of
the seriousness of the matters being discussed. I had made a resolution after
the incident in Los Angeles that I would try my hardest not to talk about her
condition in front of her. A “cutting edge epileptologist” who looked to be
about 35, Dr. N wore his blond hair with a distinct, vulnerable part down the
side, crisply pressed khaki pants, a white button-down shirt with a bow-tie and
shoes that I can only describe as Buster-Brown-like.
“Mrs. Aquino, please
come in,” the doctor stood at his door and beckoned to me. I was sitting in one
of those curved metal chairs with stainless legs and flipping through an old Scientific
American magazine. I put the magazine down and stood up abruptly, nervously
and walked down the hall to his office.
He had already seated
himself behind an enormous desk covered with papers, stacks of journals and
magazines and what appeared to be a child-sized replica of the human brain. The
cauliflower folds looked tough and protective of the smooth pink surface
beneath. The brain sat on a huge book, one of those diagnostic tomes that
doctors flip through in the privacy of their offices, when they can’t be seen
looking for information not easily recalled.
“Sit down,” he said,
motioning me to one of two armchairs angled toward one another and the imposing
desk in front of them. I was alone, though, as Michael was at work, and I awkwardly
pulled one chair out and then sat in the other.
“So, what can I do for
you today?” Dr. N. is an obviously intelligent man but sweet as well. He is
thoughtful instead of arrogant, appears earnest and concerned. His face
is placid, his eyes warm but they blink like a cartoon child’s. He is gracious,
almost humble, and he asks questions in a manner that gives you the sense that
you are making the decisions, not he. When I relayed to him the information
that I had recently received from the acclaimed Dr. S in Los Angeles, Dr. N
leaned forward and put his hands together, fingertip-to-fingertip, like a
little tent. He leaned his chin on the top of the finger tent, blinked several
times and listened intently. It seemed like what he heard was going into his head
and then down through his fingers into that tent on his desk. Neurologists have
so much power, you see, what with their delving into the human brain. After a
year of dealing with them, I was painfully aware of that power and sensitive to
inferences. I wanted to get in that tent.
Dr.
N is a good listener and rarely interrupts, so when I was finished, he let go
of the finger tent pose and let out a long, “Hmmmmmm.”
It
was my turn to lean forward, which I did, restraining myself from placing my
own hands on the desk in front of me. I willed them into my lap, to be still. I
clenched my knees.
“Well,
let’s talk a little bit about brain surgery,” Dr. N began.
