The Diving Bell and the Butterfly

Jean-Dominique Bauby at the Naval Hospital at Berck-sur-Mer, on the French Channel coast.

We all have some cross to bear in life. A physical or mental handicap. Depression. Alcoholism. Abuse. Loveless marriage. Out-of-work. Debt. Something we did. Someone we harmed. A secret. A natural disaster just leveled your home. The death of a loved one. Illness. Something. Whatever it is those around us try and support us the best way they know. They tell us, "things could be worse" or "that soldier just came back from Iraq and he lost an arm and a leg". Yeh - you could be worse off. You could be dead. As nice as they are, those words of encouragement offer little consequence to the particular situation we find ourselves in. Yourself in.

I just finished the book, The Diving Bell and the Butterfly - an autobiographical testimonial of sorts of Jean-Dominque Bauby, the 43-year-old former editor of French Elle magazine, who suffered a stroke which severely damaged his brain stem in 1995. After several weeks in a coma, he woke to find that he was one of the rare victims of a condition called "locked-in syndrome" or LIS, which had left his mind functioning but his body almost completely paralyzed - except for his left eyelid. Through a rearrangement of the French alphabet, he translated his story, letter by letter, to an assistant. He died two years after this book was published. It's been made into a movie of the same name and is nominated for multiple Academy Awards. I heard it is beautiful.

The "diving bell" and "butterfly" references in the title are Bauby's comparisons to the state of his life - the diving bell represents the state his body is in and the butterfly represents his imagination's ability to take him out of his body to anywhere he chooses - building castles in Spain, discovering the Golden Fleece, at war with Napoleon, taking a walk on the French coast, visiting a woman you're in love with, etc. If you were a butterfly, what would you do? Where would you go?

Having suffered an eye injury in 2004 that left me cosmetically handicapped (I wear a cosmetic lens to cover the damage), I understand some of what Bauby suffered through. In the blink of an eye (forget about the pun), my life changed. Am I worse off than Bauby was? No. But that doesn't make my condition any less severe or traumatic than his. It's subjective. Understand?

I recently self-published a book of my photography called, PASSION = TRUTH, A photographic essay on life's truths (see right panel to order), and I wrote the passage below on how my life changed since my accident. It's not my intention to take away from the subject matter of this post, but to, in my own way, illustrate my own diving bell and butterfly.

i feel the impact of my
eye injury in many ways
sadness, anger and bitterness
my self-confidence is not
what it once was
it's affected my acting
it's affected aspects
of my personal relationships
if i happen to glance
at my favorite portrait of
myself as a child, i think
'where has that little boy
with the beautiful brown
eyes disappeared to?'
i wish he was here but
he's gone forever
i am loved
unconditionally
by many and yet
my injury won't go away
in an industry where image
is god i feel i am at a loss
i wonder what others say
'do they think i'm ugly?'
but i'm the same person
inside as i was before
how soon the strangers forget
i'm surviving but
i am still haunted