Meditation on New Language

I need a new language to express my feelings when I read headlines like this on respected medical websites:

Surgery in Drug-Resistant Children? It's Worth It!

I imagine a group of marketers and branders, the people a medical consortium has hired to spice up language, maybe make it more upbeat or appealing in the way that television ads for drugs show people running through fields of flowers even as a litany of side effects are listed. Perhaps these people -- the ones in the rooms brainstorming, the editors of medical websites -- not the ones running through fields or having seizures or being constipated -- are the same experts who come up with pharmaceutical drug names -- Lyrica to conjure soothing musical notes instead of addiction or constant diarrhea or Banzel with its suggestion of a premier fashion house for accessories instead of an antiepileptic whose side effects include increased seizures and psychotic behavior. How about Fycompa with that tiny little nod to coma, like Fie On That Seizure-Induced Coma! Its side effects include increasing belligerent behavior and aggression, even homicidal ideation.

There's the language assigned to pharmaceutical side effects: irritability for psychotic, behavioral disturbances for head-banging or clawing one's skin to blood, increased secretions for drooling cups of liquid, and insomnia for never sleeping again.

Drug-resistant children is a phrase that implicates the child, doesn't it? It smoothes out the anxiety and insanity inherent and provoked by an inefficient treatment. It's language that covers for hideous drugs that don't work for shit to control seizures in children.

The degradation of language.

No more plums in the icebox. This is just to say.

How casual it all sounds, in this, arguably, well-intended iteration.

Brian Surgery!

It’s worth it!

There shouldn't be exclamation marks after brain surgery but rather a new sign from a new language that amplifies cutting into the brain of your child and removing a part of it, her, him, they.

Actually, I don’t need a new language to describe my feelings. You can probably surmise them. No probably. You surmise them. Your gift for recognizing irony is intact, Reader, if you’ve been coming here a while.  

We need a new language to discuss these medical things.  

We need a new language to express things like brain surgery for children — a language that could encompass possibility, gravity, and hope but also fuckery and absurdity. 

Also, specificity.

The possibility, gravity, fuckery, absurdity and hope of brain surgery.

so much depends upon a red wheel

barrow glazed with rain water beside the

white chickens

William Carlos Williams

Palimpsest

You didn't think I'd just let things go, did you? Just as they always have, and do, they percolate, lay down in layers on top of one another, waiting to be urged into shape. Did you know that Rome is a city of layers, that about fifteen feet down are the remains of Late Antique Rome (between 1500 and 800 years old) and then another fifteen feet below that is another? And so on. That dermatologist with the Drumpf hair wanted a CAT scan of the skull, threw out diseases and words, mused, casual, and then he dismissed the giant hives as coincidence and prescribed the antihistamine with the green label with a shrug.  I nodded my head and asked intelligent questions, like I do, but he disappeared in a puff of dander in my mind. You didn't think I'd let it go, did you? I lay down on the bed for hours as the words lay down in layers, waiting to be urged into shape. I feel the urge. Otherwise I'd go mad, not be mad but go mad. Go.

I read a free article in Esquire today about an epileptic man, Henry, who was rendered an amnesiac in the 1950s, after an esteemed neurosurgeon basically fucked up the surgery. Stripped his memory with knife. I read this on my phone while sitting in the car at a Valvoline and a woman with dreads poked around in the car's netherparts. I'd call that a coincidence -- both the fact that of all the things on the internets that I'd click on to read was a story about an epileptic (named Henry) and that my car's netherparts were being explored -- but I'm not like the dermatologist or even the neurologist who prefers the empirical. I'm more inclined to believe that there are no accidents. Plus -- you know -- those layers. The author of the article was the grandson of the neurosurgeon. Henry's brain, though fucked up by the establishment, proved to be incredibly useful over the years, providing us with a wealth of information about the brain. Henry himself, the profound amnesiac, retained the memory of the surgeon who'd taken his memory, though, and whenever he'd get stubborn, let's say, about taking his medication, all They'd (it's always They) have to invoke was the doctor's name, his authority, and Henry would comply. Even after the surgeon was dead and Henry sat for hours doing crossword puzzles in a chair at the home where he'd lived ever since, the once upon a time.

I am as far from stripped of memory as Henry was stripped. Those layers.

Remember the layers. The latest ones laid over six days in the hospital. Lying for six hours the day after we returned home, waiting for words.

I am a reluctant ringleader in the circus, whipping my lariat around, one hand on my crop. There are the clowns in the car, spilling out, so many of them. A distraction. That beautiful woman on the rope above -- her balance and daring! -- is me as well, an alter-ego to be sure, her daring my dissociation. Even tigers are tamed in the ring, but they return to cages, crunch on bloody flesh. So it's all illusory -- the entertainment. Why always my urge to flee? Sophie, under my arm to some distant place. Something like the Chinese mountain scene I copied in watercolor for a high school art class. The drifting narrow clouds over peaks, the gentleness and peace of it. We're always digging holes to China.

Did you think I would rest here in some new-found wisdom borne of experience, that the razor isn't as sharp, my whip as precise? Some of us struggle and reconcile.  I struggle and resist. Sophie's eyes and everything in them. We are unwitting Bodhisattvas.

pal·imp·sest

ˈpaləm(p)ˌsest/

noun

1. a manuscript or piece of writing material on which the original writing has been effaced to make room for later writing but of which traces remain.

   • something reused or altered but still bearing visible traces of its earlier form.

     
     

Alison

photo via Charleston City Paper

That beautiful woman is my friend Alison Piepmeier. I have never met Alison in person, but I've read her writing for years, delighted in her adorable daughter Maybelle, and one, glorious night talked on the phone with her for more than an hour when she was visiting southern California. She appears in the extreme parenting video that I made years ago as well (her writing about Maybelle's Down Syndrome is some of the most incisive disability writing today). Alison is a rebel, an intellectual, a raucous feminist, and a warm and beautiful person of formidable intellect. She just had brain surgery and is struggling to articulate herself in the way she has for many years as a vocal advocate for the disabled, the underserved, women, and the LGBT community. The surgery impacted the part of her brain that governs speech and language, and while she has a good chance of recovering, she still faces chemo and radiation. This morning, I sat in bed sipping coffee and was delighted to see that she had written a column again for the Charleston City Paper. What I didn't expect was to find myself weeping pretty copious amounts of tears into my coffee. The column is decisively NOT inspiration porn -- that bane of many of us in the disability community -- but it is at once heartbreaking and tremendously inspiring. It'll take your tears and your breath.

Molto forte e corragio, Alison. We love you.

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.

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.

Things I Hate, Part 2

You might want to warm up on Part I, here, that got a surprising amount of comments which leads me to believe that in a general culture of constantly striving for happiness, there's room for a bit of the curmudgeonly. I only have a few to start and hope you'll join in, if you feel the need. Otherwise, go on with your cheerful outlook.

1. The expression "necessary evil"
2. Deflated balloons -- the ones that slowly drift around the house as they lose air are cool, but I just can't stand the ones that lie on the floor, sometimes for days and days (at least in our house) until someone, always me, brings them to the garbage. Then I usually wonder, with a small bit of agitation, whether I should shove them into the garbage bin, slightly blown up, or pop them and then put them away, which leads me to:
3. Popping balloons and balloons that pop. I hate the tension that precedes the one and the startle reflex that comes at the other.
4. Hearing about miracles, particularly present-day ones that involve brain surgery or anti-epileptic drugs and children who have been miraculously saved and/or whose seizures have miraculously stopped due to having 1/2 of their brains removed or three doses of the new med. Humor me here, but I've had this fortune cookie fortune in my wallet for twelve years:

I wonder if the Chinese word for "never" was accidentally translated to "soon."

     5.     When people use the word cynical improperly, as in calling me cynical for the above hatred

     6.     My own curmudgeon-liness when faced with others' kind intentions and overtures. 


     7.     Weird formatting issues like the one above -- this happens when I cut and paste -- the highlighting 
              behind the words. How do I get rid of that?




Reader, what do you hate these days?