The Diving Bell and The Butterfly

I read The Diving Bell and The Butterfly on a friend's recommendation partially because I trust their taste, partially because I needed a new book to read, and almost fully because of Jean-Dominique Bauby's incredible story that it tells and how it was managed to be told. After suffering a stroke that resulted in locked-in syndrome, Jeam-Dominique was left completely paralyzed- imprisoned in a body over which he had no control, without any sort of contact to the outside world aside from blinking his left eye. This 132 page book was written by him using only his left eye to blink letters to someone typing. And although I knew that it would inevitabley be heartbreaking, I didn't expect a beautifully written, insightful, thought-provoking, and life-changing book out of this. What captured me the most was his memory of small moments that he missed, little pleasures from his old life that would never carry over to his new one. Here are two excerpts where he talks about that:

The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted immersions that were the joy of my previous life. Armed with a cup of tea or Scotch, a good book or a pile of newspapers, I would soak for hours, maneuvering the taps with my toes. Rarely do I feel my condition so cruelly as when I am recalling such pleasures.

For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it's a restaurant, no need to call ahead. If I do the cooking, it is always a success. The boeuf bourguignon is tender, the boeuf en gelee is translucent, the apricot pie possesses just the requisite tartness. Depending on my mood, I treat myself to a dozen snails, a plate of Alsatian sausage with sauerkraut, and a bottle of late-vintage golden Gewürztraminer; or else I savor a simple soft-boiled egg with fingers of toast and lightly salted butter.

Last thursday, I sat inside a cafe across the street from Ms.51, wasting time before a rehearsal that I had to be at at 2:00. School was out for me already as graduation had been the day before, but there was another week left for the younger students. I sipped my iced coffee and wrote in my notebook and felt very grown up, watching the sixth and seventh graders out to lunch- yelling to their friends, strolling into the restaurants and delis where the people knew my order. I heard them each complain as the whistles blew and they slowly trickled back into the building we all considered to look like a jail and I realized what I had taken so for granted and what- they too- were overlooking. I couldn't help but be jealous of each and every one of them for the extra year or two that they would have there that I wouldn't. And when I went to pick up my report card and the teachers were all in a straight row of chairs that I wasn't allowed to pass- a row of chairs blocking off the entrance to what had been my second home for the past three years, the ugly brick building with broken lockers and bars on the windows and hideously painted walls that I'd spent only 194,400 minutes inside of and that held so many of both my worst and most enamoured memories- only then did I realize what was over, what I had lost. It wasn't until then that I realized that these small comforts of my middle school were- not soon to be, but already behind me- it wasn't until then that I realized how strongly I relied upon these comforts or that they existed at all. It hit me so suddenly and painfully in a way that not much does.

I don't mean to compare my experience with moving on to high school to Bauby's condition because it- of course- doesn't compare on any level and I don't claim to think that it ever can. As shallow as my struggles are next to his, this book has made me realize what defines happiness, what is goodness. It's not having a perfect life. I don't think that happiness comes with what anyone pictures or is convinced will make them truly happy. No one has a perfect life, because even when they get what- in their mind- will most definitely make them deeply happy, they want more- that's just human nature. I think that happiness is having little spurs of goodness to sustain you for that moment in time before the next one. Happiness is his warm bath and appreciation for food- happiness is having a school where I know faces and I love teachers and I'm on the top of the heap. Happiness is the forty minutes of freedom we were given with our friends out to lunch that I won't have in high school, it's going into Cafe Martin and not having to tell Martin what I want to drink. Happiness is simple things that are easy to overlook look and are far too often forgotten.

And I'm terrified of this- of time or not having enough of it, of taking life for granted or just taking the small, important moments for granted. Because I don't think that anyone can be happy if they don't see the good in pieces of their life until they've lost those pieces. I don't think that anyone can be happy when filled with the regret of having having overlooked something- no matter the size or importance- that made them happy. I think that it's about more than stepping back and looking at things in prospective and trying to realize your good fortune, or trying to see it all with an optimistic point of view. I do that- or at least I try to. I don't think the idea of optimism or gratefulness is something that people forget about, it's just something that- in the moment- is much more difficult to commit yourself to than it seems. Maybe it's because we lose faith in ourselves or in other people or in the world or in life or in whatever religion we claim to be faithful to. But this underlying fear that comes with almost everything I do or say or think or feel is that I somehow won't have control over it- as if something will dictate my thoughts, monitor my words, change my actions, take authority over my feelings. As if something will keep me from appreciating these moments given to me or not let me recognize the good things in my life. Something will hold me back, something won't allow me to be happy. Or maybe I'm just afraid that I won't allow myself.

This is why I read.

"Like fleas or the smell of cheap cologne, she is hard to get rid of. Smiling, smug, arms crossed, her pixie-toes tap out a tap out a metal rhythm that sounds like the smack of surgical tools falling onto a metal try. Like genius or sorrow she has curled up inside me and censors no evil, no criticism.

Sometimes she's British. Sometimes she is a poet. Sometimes she has a drawling southern accent when she mocks me. Other times she is long-nailed and pure JAP. She's got a rough cat's tongue and a debutante smile. She's got a Chanel bag, and outdrink me any day, and is the skinniest girl I know. But she is always, always right.

She likes to skip around and wear transparent victorian nightgowns even on the coldest nights, in order to mock my shivering mortality.

Occasionally, late at night, she is kind: she lights my cigarettes, pours me drinks, and waits quietly for some mutual banter to emerge.

But more and more, she resembles a lion-woman: her hungry iron gaze is trained on me, never wavering. Her eyes penetrate; she is always prepared, always ready to pounce on the slightest vulnerability. When I stumble on the street, she laughs: proof. But when I slip into my clothes, and they hang a little looser, she pats my back and hands me an extra sweater, my lion self.

She is incomplete, a succubus: trigger-happy, toilet-mouthed, knife-wielding, blue and white and sometimes green in the face from screaming, from telling me all I cannot have. When I manage to beat her down, tie her into a chair on the far side of the room, get her to eat some food, she smiles her sanguine, toothless grin. She starves proudly, waits, like a saint, she waits for death by fire or baptism.

--'This is when' she spits, when it is three o'clock in the morning and I can't sleep from hunger

She is holy, wholly my own, and when I reach out to touch her image in my face, she hovers an inch or so before my skull. Then she flicks her tongue out at me like the enraged lion she is; she snaps my fingers between her feline jaws; a barrage of dead spiders, splinters of wood, and bone.

--'This is when I love you the most' "

Even after I had finished reading the book "Skinny" by Ibi Kaslik, these two pages out of all 256 were what stood out the most to me. Like a poem or a catchy song, I had them stuck in my head for weeks-- or at least parts of them. Everything from this excerpt, in my opinion, is beautiful, real, raw, and completely and utterly heart-breaking. This girl that Giselle describes is everything she is, desires to be, or fears the most in the world.

This girl is her.

She is each fragment of her imagination.

She is her perfect self and her weakest self

Her beautiful self, and her hideous self.

She is her conscience and confidence or lack thereof.

What I think is so interesting about this is the whole concept of a war against yourself, of you being your own worst enemy, of your greatest fear being yourself-- what you can or cannot do to or for yourself. I know that this is something I've experienced- maybe not as deeply or vividly as Giselle, but an experience is an experience, right? Though I've never felt an image like this one so graphically or robustly, I know what it's like to be afraid of yourself or what you've done or become, and I think that most others do as well whether they realize it or not.

Some may think that the notion of battling yourself seems silly. Now, think about it some more. You know yourself better than anyone or anything else in the whole world. You know every single strong point and each and every weakness. You know what makes you vulnerable and what will have no affect at all. You know what has happened to you and what hasn't. You know what you want and what you fear. You've spent more time with yourself than anyone. You could navigate your mind or your heart with your eyes closed, you could even do it asleep.

And, you do.

Every day.

Which is, when you think about it, the key to defeating anyone- knowing every single nook and cranny of their inner workings like the back of your hand.

And that is what's so terrifying about a battle against yourself-- you will never win.