Brain Surgery

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.