The Diving Bell and the Butterfly

Still from movie "The Diving Bell and the Butterfly", 2007

I'd like to thank the kind people who responded to the previous post with sympathy and wisdom. I genuinely appreciate your generosity. It is so good to know that there are kindred souls literally all over the world.

I may not be able to be consistent with blog entries for a while, as the demands of my family's needs press me. My mother is 91, and my brother has lived with her as her caretaker. They have taken him to Phoenix, which is a 100 mile drive from Tucson, so the visits are long endeavors. I'm working to get the insurance necessary to bring him to Tucson. What the longer term prospects are for him, I don't know. Glenn has had a brain stem stroke, and the prospects aren't good - it is hard, with such, to know what kind of recovery he may make, if there is to be a recovery. This is something my mother and other brother will not, or cannot, contemplate, and so I am also isolated in this. As it is, Glenn may have "locked in" syndrome, which means, he can perceive, hear or perhaps see, and cannot communicate.

I have tried asking him to blink, or to move his feet, but am unable to determine whether he responds with volition or not. I do not know what kind of therapy he will get in Phoenix. I am overwhelmed, frankly, with this situation. These circumstances leave me mute..........I do not know how to ease my brother's suffering, I also do not know how to come to terms with the aspects of myself that are overwhelmed with the needs of my family and my own needs. I will do my best, and the best I can do ultimately is to be aware. I will try to not deplete myself with guilt or the other emotions that follow.

I'm in T or C for a few days, a friend from NY will be taking the studio I just finished, which leaves me with a wistful feeling. In my imagination it is full of paints and canvases ready to become interior universes...........well, someday I hope, and the best laid plans of mice and men, etc................ here is a quote by my favorite author (who has created many, many universes that I've come to visit and occasionally inhabit). I put it on the inside door, alongside a yin/yang symbol. It will be a blessing for the fecundity of the place. Sometimes, I wonder about my obsession with painting and renovating rundown storefronts and motorhomes and rooms and yards and circles of stones in woods ........ I think I'm always running around making studios, theatres, sacred places, shrines........making creative wombs for the Divine to manifest, even if I can't be there to see it happen. Making containers..............

"To create difference - to establish strangeness - then to let the fiery arc of human emotion leap and close the gap: this acrobatics of the imagination fascinates and satisfies me as no other." ......Ursula K. Le Guin

I wanted to share something about an extraordinary book, and now a recent movie based upon the book by Jean-Dominique Bauby. This book would not have come to my attention had my brother's stroke not occurred. I take the liberty (and I sure hope I never get caught with all the liberties I take in this blog of copying the writings of others.......if I do, I hope there is some humanity in the publishing world that sees it is from admiration, and I am careful to give the credit due).........I take the liberty thus of copying below a review by Thomas Mallon, with links to the review. Also, should anyone want to purchase the book, here's how you can buy it from Amazon:

http://www.amazon.com/Diving-Bell-Butterfly-Memoir-Death/dp/0375701214

"I can weep discreetly. People think my eye is watering."

Jean-Dominique Bauby

"I think you need to go into his world in order to get out of his world. And he said the only way he could escape his diving bell was through his imagination and his memory."

Julian Schnabel, Director The Diving Bell and the Butterfly

June 15, 1997

In the Blink of an Eye

---

After a devastating stroke, the author dictated this memoir using only his left eyelid

By THOMAS MALLON

THE DIVING BELL AND THE BUTTERFLY By Jean-Dominique Bauby. Translated by Jeremy Leggatt. 132 pp. New York: Alfred A. Knopf. $20.

A year and a half ago, following a catastrophic stroke and weeks of deep coma in that same hospital, Jean-Dominique Bauby gradually ''surfaced'' into a new existence as a victim of ''locked-in syndrome,'' mentally alert but deprived of movement and speech. Just 44 years old, his body useless but still painful (''my hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold''), he was forced to recognize that his former life in Paris as the witty, high-living editor in chief of Elle magazine had become as unreachable as the books and trinkets across his hospital room, where he now lived ''like a hermit crab dug into his rock.''

His time ''as a perfectly functioning earthling'' ended, one might say, in the blink of an eye. But it was blinking -- that age-old image of heedless speed turned into literal, concentrated labor -- that saved Bauby from becoming just another object in the room. By moving his left eyelid in response to an alphabet rearranged according to the letters' frequency of use, Bauby managed to write a book as moving as Job's and as expansive, in its way, as any composed by the wheelchaired, boundless Stephen Hawking.

Jean-Dominique Bauby was the victim of a stroke that left his mind and one eye functioning -- enough to enable him to dictate "The Diving Suit and the Butterfly" to Claude Mendibil before dying of heart failure. (Jean-Louis Sieff)

''It is a simple enough system,'' he explains. ''You read off the alphabet . . . until, with a blink of my eye, I stop you at the letter to be noted. The maneuver is repeated for the letters that follow, so that fairly soon you have a whole word.'' Fairly soon! Less soon when the amanuensis anticipates and makes mistakes: ''One day when, attempting to ask for my glasses (lunettes), I was asked what I wanted to do with the moon (lune).''

Bauby allows that his ''communication system disqualifies repartee,'' but it does beautiful service to all sorts of physical and emotional description. ''There comes a time,'' he explains, ''when the heaping up of calamities brings on uncontrollable nervous laughter,'' but in this strong, slim volume the author displays a writerly control equal to his honesty: ''One day . . . I can find it amusing, in my 45th year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn's. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad, and a tear rolls down through the lather a nurse's aide spreads over my cheeks.'' There are scenes in Bauby's narrative -- his discovery, in a windowpane, that he is not just ''reduced to the existence of a jellyfish'' but ''also horrible to behold'' -- that one might be inclined to describe as unbearably sad, if ''unbearable,'' thanks to this book, were not a word one will never again use quite so loosely.

The diving bell of Bauby's title is his corporeal trap, the butterfly his imagination: ''There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court.'' Childhood fantasies of war heroism alternate with elaborate dreams of cooking, in which his pantry is a previous lifetime's memories of smells, tastes and textures: ''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. . . . The boeuf bourguignon is tender, the boeuf en gelee translucent, the apricot pie possesses just the requisite tartness.'' It's as if he'd reversed the most famous moment in Proust and used memory to bring back the madeleine..........

The author cultivates strong feelings, especially anger, to keep his spirit from atrophying along with his limbs. But despite occasional sarcastic eruptions, the book's tone, in Jeremy Leggatt's translation, is dominated by a sweet, even humorous, lyricism. Bauby notes with pleasure how, in his reordered alphabet, ''T and U, the tender components of tu . . . have not been separated,'' and he recounts his practical distribution of all the prayers coming his way: ''A woman I know enlisted a Cameroon holy man to procure me the goodwill of Africa's gods: I have assigned him my right eye. For my hearing problems I rely on the relationship between my devout mother-in-law and the monks of a Bordeaux brotherhood.''

to read the full review