Reflections Enter the mind of a Broken Butterfly

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Jean Dominique Bauby, former editor of Elle, suffered a stroke to his brain stem that left him with locked-in syndrome. Subsequently, through blinking his left eye, he writes his memoir of this experience, The Diving Bell and the Butterfly. For half an hour, the alarm on the machine that regulates my feeding tube has been beeping out into the void.

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I cannot imagine anything so inane or nerve-racking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed and the stuck-together lashes are tickling my pupil unbearably. And to crown it all, the end of my urinary catheter has become detached and I am drenched. Automatically, she turns on the TV. Evil spirits descend to taunt him with the stench and discomfort of a misplaced catheter, an insatiable need to scratch an itch and an incessant and inescapable racket. While driving, Bauby began to feel disoriented and dizzy.

He pulled the car to the side of the road, collapsed in the back seat and urged his son to seek help from his sister-in- law, a nurse, as soon as the driver arrived at her home. Printed in the Netherlands. He has been in a deep coma for almost two months. He relies solely on his left eye to communicate with visitors and health providers. Through his memoir, The Diving Bell and the Butterfly, Jean-Dominique Bauby creates literary portals connecting the person he was before the accident with the person he has become since the accident.

Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory. Locked-in syndrome, also known as pseudocoma, is a condition in which patients remain aware and alert but are not able to communicate verbally or by gesticulation. Their personalities are literally locked into their motionless and powerless bodies. The condition is characterized by quadriplegia, lower cranial nerve paralysis and mutism.

They remember, imagine, understand, calculate, and perceive, but their bodies are utterly immobile and inflexible. Virtually all voluntary speech and movement are impossible. He introduces himself to us in this memoir and offers a gateway into his loneliness, his powerlessness, and his hope. Bauby describes two different selves shaped by two different bodies, one before and one after the stroke. Through the interplay of memory and imagination, Bauby creates himself, weaving a personality erected upon an edifice of recollection.

To be sure, there are moments when I want something that, despite my willing and desiring, I cannot obtain. The taken-for-granted power of an able body is coupled with a cognizance of physical limitations, but the noyau senti is truly crippled when physical disability befalls someone. For example, Bauby cannot reach for a glass of water although he might be thirsty.

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His thirst may still be satiated through the gastrostomy tube; however after the stroke he no longer has the physical power to satiate his thirst himself. None the less, my willing — and by will I mean the power of voluntary, conscious, and deliberate action or choice — is expressed and made avail- able to me through my body: in reaching, in laughter, in visiting a friend, in recoiling in fear, in walking away, in facial expressions of anguish. Thus, that Bauby used to be able to reach for water and will never again be able to do so necessarily refigures the whole — his body, his sense of himself, his being-in-the-world, etc.

His identity — that is, his understanding of himself, has changed because his body has suffered injury. Locked-in syndrome has encroached upon him and he is no longer who he was. As Zaner writes, my body is an orientational locus. Yet one can imagine the potential augmentations in personal identity that might occur when the spatial possibilities for interacting are radi- cally inadequate. Diversity in perception and experiences both dependent on my body are important for discovery and intellectual development.

As my body grows, I my self grow. As my experience becomes more diverse, I learn about myself and I become myself.

Reflections

When the body remains a locus but loses11 much of its diversity of orientation, a radical change not only in perception, but of identity is likely to result. If the TV is turned on, it is vital to have made the right decision. It is almost a matter of strategy. For three or four hours are likely to go by before the return of the kindly soul who can change channels.

I contemplate my books, piled up on the windowsill to constitute a small library: a rather useless one, for today no one will come to read them for me. A very black fly settles on my nose. I waggle my head to unseat him. He digs in. What before his accident was so simple, swatting a fly, becomes impossible now that his body can no longer express and respond to his desires — to that which he wills. His kinaesthetic flow patterns are inter- rupted as a matter of course. Pre-stroke causal structure might have been: if a fly lands on my nose, then I reach up and shoo it away.

Post-stroke causal structure seems to be: if a fly lands on my nose, then I patiently wait for it to dart away or I hope that someone has seen it and can swat the fly for me. First, Bauby experiences his own body as uncanny. In other words, he realizes that his rich iden- tity himself can be apprehended by others as an object in their world to be ignored or to be noticed. The very fact that others can see us and interpret us as they like affects our own identity. He is stuck in the material of an inherently limited physical body.

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And he is stuck in this particular body — the one that can no longer move. He cannot trade bodies with anyone and he cannot escape his own. Finally, he sometimes experiences his body as an alien presence. Unlike the healthy and able bodied, Jean- Dominique does not have transient realizations of the uncanniness or limitations of his body: it is now that his self-identity is entangled with those limitations. This is at times an anguishing experience, particularly because he can remember the time when he was free to speak and move. Bauby describes the experience of alienation that arises when he exper- iences a peculiar but inevitable estrangement from his own children.

Bauby says: Grief surges over me. There are no words to express it. You can't get more genuine and caring than Roma Downey. Box of Butterflies is a beautiful way of reminding us that God is bigger than anything we are facing. It's a long overdue blessing that she's sharing these stories with all of us, I promise you will be encouraged.


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Roma has the sweetest spirit that exudes contagious peace and pure joy in any circumstance. In sharing her honest life experiences paralleled with Scripture, she gives such a refreshing perspective on the simplicity of faith, the importance of being still, and the reassurance that we are not alone in this journey.

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Box of Butterflies is a beautiful tool to see the redemption and blessing in all things! Like a Box of Butterflies , Roma Downey's stories flew off the page and filled my heart with hope. Find a quiet spot and journey with Roma from the war-torn streets of Northern Ireland to the shores of sunny Malibu. As you do, you just might see the exquisite design in your own life. God is at work! Box of Butterflies is proof. I am so grateful that Roma Downey is sharing these spiritual nuggets with us in her book Box of Butterflies she inspires us to reflect upon our own lives, our blessings, our heartaches and remind us that a life of love and gratitude is ultimately a choice.

Like Roma Downey herself, this book is a breath of fresh air.


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Roma skillfully reminds us - blessings abound in every circumstance of life. The stories Roma Downey shares in Box of Butterflies are sure to inspire and encourage. This enjoyable read will awaken you, giving you new eyes to see the blessing of God's presence in the encounters we otherwise might miss. It's the perfect gift to hearten a friend.

Box of Butterflies exudes comfort and positivity. Walk with Roma through a personal and timeless journey of self-discovery that unlocks healing for all who read it. Every thought restores inner harmony and brings the world into focus through a godly lens. This is the book to share with family and friends. Its core principles are the true pathways for creating happiness and engaging with the world. Only Roma Downey could create a book like Box of Butterflies.

She is genuinely the kindest and most gracious person I have ever met. Her essence is translated through both her writings and the artistry that fills the pages.

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May her spirit fill your hearts through her words. Best known for her portrayal as the gentle angel Monica, Roma Downey again reveals God's amazing love and desire for intimate relationship with us in Box of Butterflies. This beautiful collection of personal stories, quotes and poems is sure to become a best-loved treasure, and I guarantee you will never look at butterflies the same way again. Roma Downey's new book, Box of Butterflies is just the thing we all need - a heart felt personal journey through both the laughter and difficulties in life that leads to the essential joy to be found in that journey.

Roma's personal story will touch the hearts of many who've experienced the loss of loved ones, or the dashing of dreams But her deeply optimistic and faith filled spirit will inspire everyone who reads this book. Beautifully illustrated, and captioned with profoundly moving quotes, songs, and poems - Box of Butterflies is a traveler's guide through the path of life - and Roma's everyday hope fills us with faith for the road ahead.

Roma Downey is the single most inspirational human being I have ever met, and here she is at her very best. Box of Butterflies will have you facing life with a pep in your step and joy in your heart. You need this one.