Communication Challenges

Locked-In Syndrome

"Diving Bell and the Butterfly"
Movie Theater Release - 11/30/07

Health Care System Weaknesses


Imagine what life would be like if we were unable to talk, make sounds, gesture with our hands, but we hear, see and understand people. We know what is happening to us, perceive circumstances and activities around us. Basically, we're just "locked-in" our mind, without voice, presumed to be unable to communicate and maybe thought of as a mental vegetable.

This sudden circumstance presents the communication challenge which has faced a New Jersey, U.S.A. husband and father, Steve Chiappa, since 2001
and a New Zealand Rugby player, Nick Chisholm, since 2000.

The National Institute of Neurological Disorders and Stroke
describes this Locked-in Syndrome as "...a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements..."

You can refer to The Association for Locked-In Syndrome - French which is written in English, too, for additional information.
This locked-in syndrome is also the focus of a book I read shortly after publication years ago. It's written by a man who actually lived the experience which he describes in The Diving Bell and the Butterfly, also known as "Le Scaphandre et le Papillon."

The years since my reading, I've followed the evolution of the book to film. Finally this true story is scheduled to be released into motion picture theaters November 30, 2007.

I experience trepidation about viewing any movie based on a book I view as exceptionally unique in writing and content as I do this one. All too often there is little resemblance between the book and film. I hope this film's translation depicts the author's experience realistically, effectively describes the arduous, tedious acquisition of his communication skills, though he was unable to speak or gesture, and conveys the narrative power of his words.

Australia's Radio National host Robyn Williams, a science journalist, on his broadcast transcript of "ockham's razor"
says "'The Diving Bell and the Butterfly' must be one of the most extraordinary books ever written - if written is the right word. Jean-Dominique Bauby was trapped in his paralysed body - the diving bell - in which his mind flew like a butterfly. He was locked in." (Italics and bold print added)

From the book cover:
"In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young childen, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.

"By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.

"Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly. This book is a lasting testament to his life."

An extract of the book is provided with this link.

Assoc. Prof. Roger Rees, Director, Institute for the Study of Learning Difficulties, Flinders University of South Australia, Adelaide is quoted in the Robyn Williams broadcast transcript noted above, reading this excerpt from Bauby's writing:

"I am fading away, slowly, but surely. Like the sailor who watches his home shore gradually disappear, I watch my past recede. My own life still burns within me, but more of it is reduced to the ashes of memory. Since taking up life in my cocoon, I have made two brief trips to the world of Paris medicine to hear the verdict pronounced on me from medical heights. I shed a few tears as we passed the corner cafe where I used to drop in for a bite. I can weep discreetly, yet the professionals think my eye is watering."

Rees also asks a question we might ask: how many people are there in hospital beds who receive no stimulation, are not recognized as individuals with intact minds, who might still be able to contribute if only their talents were recognized?

Here is a link to an extensive account of then 23 year old New Zealand rugby player, Nick Chisholm's experience in 2000 with locked-in syndrome. His journey, living with the syndrome is described in much more detail along with ethical issues involved.

Steve Chiappa describes on his web site being able to fight his way back into the communicating world having been given a Locked-In Syndrome diagnosis, due largely to the efforts of his family as he reports on his web site.

This New Jersey, U.S.A. husband and father of four grown children has written that at 52 years of age "On Christmas eve 2001 {I} received an early Christmas present, a severe brainstem stroke which left me with a condition known as Locked In Syndrome. At first I was completely unresponsive and unable to breathe on my own." He continues by describing becoming more alert, but he experienced a lack of recognition and acceptance by medical staff that a mentally functioning person resided in his body. What a nightmare of frustration that must have presented him as it would anyone.

Steve Chiappa states the reason for starting his web site is to provide information and hope for those who have received the locked-in syndrome diagnosis he received. Perhaps family, friends and loved ones searching the Internet for information will find him. He provides an email address for contact.

He also says:

"We often think that we are living in a society that provides the best, most advanced medical care available. Get ready for some pretty grim realities.

"Our healthcare system is ill-equipped to handle anything that requires long term treatment."

I know this to be all too true for individuals experiencing any of the large spectrum of communication problems and/or also cognitive deficits. Rehabilitation therapy services in all disciplines have been and continue to be reduced in our U.S. health care system. Most people are unaware of this situation until such time as they personally need the service(s) or have a friend or loved one who does.

Changes in our present health care system, or formulation of a new system, will require careful monitoring of any plan devised to insure further cuts are not surreptitiously incorporated in the final draft. Then there's the fine print that slides by unnoticed by most, as happened with Medicare Part B services some years ago.

Each of three therapy disciplines (Physical, Occupational, Speech) was intended to have a funding cap. The cap itself presents another whole issue relative to long term care needs of some. However, the final adopted criteria with the new limits deviated from the intended funding for each of the three disciplines to have separate caps. Instead, a shared cap between two of them was interpreted (Physical and Speech Therapy.) Efforts to correct this error and inequity have since been repeatedly rejected by legislators.

The fact of this disregard of original intent confirms to me that any health care system plan adopted, better be written carefully and exactly as intended before passage, as the likelihood of corrective adjustment afterword may be quite remote. Such fine print also needs to include the requirement for timely delivery of all medical services, as I have written about previously.

Assessment by a certified Speech-Language Pathologist is highly recommended for any infant, child or adult at any age for whom there is a communication problem, including those who have a locked-in syndrome diagnosis. In the U.S.A. contact the American Speech-Language-Hearing Association (ASHA) for referral to an ASHA certified professional. Solely in the interest of disclosure I should acknowledge this is my profession. All opinions and views expressed here are personal and my own.

Following are the links repeated from above:

Accounts of Individuals Living With Locked-In Syndrome
Steve Chiappa, New Jersey, U.S.A. Husband and Father
http://locked-in-syndrome.com/index.html

Nick Chisholm, New Zealand Rugby Player
http://www.bmj.com/cgi/content/full/331/7508/94

Book:
"The Diving Bell and the Butterfly" Amazon.com
http://www.amazon.com/Diving-Bell-Butterfly-Memoir-Death/dp/0375701214

Movie Theater Release 11/30/07
Web site: http://www.thedivingbellandthebutterfly-themovie.com/

Association for Locked-In Syndrome - French (also in English)
http://alis-asso.fr/ewb_pages/e/eng_alis.php

Elle Magazine
http://en.wikipedia.org/wiki/ELLE
http://www.elle.com/magazine/