Thursday, October 17, 2013

Brain Surgery, Part 2

Vintage Brain Surgery illustration, via Scientific American Magazine

Here's Part 1.

And here's the rest:

“There have been great advancements in the area over the last ten or so years,” he continued, “and outcomes can be significantly more positive than they ever were.”
            I shifted in my seat, nodded my head, probably asked a question. I had done a lot of reading but knew only a little about brain surgery.
            “Basically, there are two ways to go: a corpus collosum or complete hemispherectomy.” Dr. N swiveled around in his chair and reached behind him for one of those replicas of the human head, similar to the one my mother had in her closet when I was a little girl. That one was made of Styrofoam, I think, and she used to put her wig on it, when wigs were popular and even normal people wore them, like jewelry or a belt. Dr. N’s head, though, was skin-colored and while it wasn’t really lifelike, it was a lot creepier than my mother’s. At the top of the head, a red line bisected the head and ran down the back, toward the neck. It was this line that Dr. N traced, showing me.
            It was also about then that I started feeling really strange. I was asking questions, I’m sure, intelligently, because I’m good at that. I’m not particularly emotional with doctors and am able to keep my composure despite the gravity of the situation. I felt all tingly, though, and was straining to hear his words. It was almost like when the dentist placed the laughing gas mask over your mouth before a procedure and his voice sounded like it was coming from the far end of a tunnel. Dr. N, though, unaware of anything strange going on, continued.
            “You see this line going down the center? That separates the right and left hemispheres of the brain. Now, in a corpus collosum, you can basically snip that line and actually break the connection between the two sides. If you do that and it works, whatever side of the brain the seizure originates will stay there, not travel and affect the whole brain.”
            Snip, snip, I think and right about then my head separates from my body and floats on up over me, over the desk and Dr. N and hovers there, gently looking downward.
            “Now, in a hemispherectomy, what you’re basically doing is cutting out the entire right or left hemisphere of the brain and then filling up that cavity with fluid.” 
            Since my head is floating over my body, I actually see myself, nodding, murmuring, leaning forward and watching Dr. N trace the red line down the brain, turning it in his hands. I see my mouth move, talking to him, but I can’t hear what I’m saying. I’m impressed, though, that I am talking at all about such a thing. The difference between snipping the connections and removing the entire hemisphere. Of my baby daughter’s brain.

            I don’t remember when my head or my consciousness rejoined the rest of my body. I don’t remember how or when I walked out of the doctor’s office that day. I do remember knowing that I had had a strange out-of-body experience that some might call dissociation but to me was just part and parcel of the whole reality of caring for Sophie. Is there any other way to respond when you’re discussing brain surgery on a child?
People come up to me periodically, whenever public television airs some special or they read about the miracles of brain surgery.
            “I saw this program last night,” they’ll say, “and this kid had this weird syndrome where she seized basically all the time. Well, they took out her brain, I mean half of it and the other half just picked up where the removed one left off, and now she’s great! Have you ever heard of that or thought about it for Sophie?”
            I listen to this kind of enthusiasm politely, explaining that Sophie is actually not a good candidate for brain surgery because her seizures are multi-focal, meaning there isn’t one or even two spots where they originate. There are many. But, actually, what I really want is to scream, “Are you fucking out of your mind? Do you realize what you’re talking about? What they’re doing? Taking out a chunk of a person’s BRAIN? A child’s brain, who can’t even make that decision herself? How incredibly invasive that is? How utterly horrible?”
            Yes, yes, I realize that science can work miracles and that many people’s lives are saved and the quality of their lives is vastly improved. But I can’t quite wrap my own brain around the idea of cutting some of it out. Isn’t who we are somehow encoded in our brain, in that organ? Would cutting it out inevitably “change” that essential part of us?Right? Or not? Where I really get stuck, though, is how to make that decision for another person. Because despite the fact that Sophie is my daughter and, at the time, was an infant, and her father and I have the responsibility to make decisions regarding her welfare, I believe deeply in her personal integrity, her autonomy, the idea that she exists, complete and whole. Who am I or who are these men and women who make these decisions to cut out an essential part of who she is and discard it? Arguments, I know, could be made that I am ignorant, that the brain is an incredibly plastic organ, capable of regenerating, compensating and recovering to an incredible degree. I think that if it were a question of life or death, I would surely take the chance on life. Yes, yes, take it out, I’d say, if that will save her. Anything to save her.

            Thank God I never had to make that decision, though, so I can nod my head when people tell me about the miracles of brain surgery. I’m struck by how casually we all live our lives, really, in these advanced times. We can sit in doctors’ offices and intelligently debate the difference between cutting the corpus collosum and the hemispherectomy. We can watch a two hour special on a network newsmagazine, believing that those people’s lives are so amazing, can you imagine? While sitting in the dentist’s chair, waiting to get a cleaning, we read an article discussing the ethical decisions regarding a woman’s face transplant. I feel like we were taken from the casual life eleven years ago when Sophie was first diagnosed and dropped into this one of  constant impossible decision-making and a low grade anxiety broken only by the adrenaline rush of true crisis.  And it’s no wonder, then, that my own brain was able to so effortlessly release itself that morning – Snip Snip -- in the doctor’s office, let go for a minute and watch, observe from a different position.


  1. Oh God, Elizabeth. This is so beautiful and terrifying and real. I'm crying and I'm listening. When my parents were approached about putting one of the first cochlear implants into my sister, my mother's response was simply: that's my girl. That's her brain. That's HER. No.

    1. I gotta respond to this- sorry- but the cochlear implant actually has NOTHING to do with the brain. I am one of those people whose parents were also approached about a cochlear implant. Like yours, mine said no. I got my implant at 19 years old, when it was far too late to be truly, 100% of use. Plasticity only goes *so* far- the "golden" optimal age for learning listened language is in childhood. Nevertheless, it serves me well. It saved me- I do hear. Please don't spread false info about the implant- it is electrodes embedded into the cochlea NOT THE BRAIN. And in this case (or at least mine), it would have been more merciful to implant her.. & then she would have a REAL choice later on in life- embrace the deafness, go with the hearing, or straddle both as you please. Taking out part of someone's brain is not analogous- they cannot reverse that decision, ever.

    2. (As an aside-- lovely and stunning, as always, Elizabeth. What strange days we do live in.)

  2. Brilliant and sobering. Thank you for sharing this. In so many ways you've prodded me to think more deeply about all of it.

  3. When Max was four months old, we did have surgery to remove a portion of his brain. That portion of his brain had no function other than firing of hundreds of seizures a day. It helped, tremendously. But, anytime the mention of more surgery ---someday--- comes up, I always say to myself mostly, but sometimes out loud, No.

  4. My boy isn't a surgery candidate either and I'm so grateful that's one awful decision I won't have to make.

  5. Terrific essay, written in a very gripping and compelling way. I'd heard of cutting the corpus collosum, but I didn't know a "hemispherectomy" was even an option -- and all I can say to that is HOLY SHIT. I mean, I suppose it might work in some people to diminish the seizures, but it's hard to believe the other half of the brain can pick up for the missing half COMPLETELY. Surely there would be some lasting effects.

    I suppose it's understandable to have that screaming impulse when people bring up such alternatives, but they're just trying to be helpful, as you know. Those of us who don't have children in this position can probably be insensitive in a million ways without even being aware. I apologize in advance!

  6. Brilliant and so intense. I want to wrap my arms around that young mother. I remember feeling so overwhelmed and vulnerable when my children were infants and I imagine that what you faced must have compounded those feelings a million times over and left you changed forever. But you've done well, Elizabeth. You have done so very well.

  7. This: " of constant impossible decision-making and a low grade anxiety broken only by the adrenaline rush of true crisis." Wow. You are a phenomenal writer. And the styrofoam head, my mother, too, had one in the closet. You are right, it was normal then.

  8. More than one time I have had people tell me about something they read of or saw, about getting half the brain removed and they wanted to know what I thought about that, I get rather disgusted ......How would they feel if I said that to them?
    Hey, Buster Guy, what do you think about having half of YOUR brain cut out?
    But my Momma says ," Jess, they really don't know what they are talking about." ( that means be nice, so I try)

  9. It is truly frightening to think about how science got to this point and the patients along the way. I saw a documentary on the history of the lobotomy a couple of years ago. Truly haunting - and perhaps not that different.



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