Monday, November 26, 2007

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

Nick Chisholm, New Zealand Rugby Player

"The Diving Bell and the Butterfly"

Movie Theater Release 11/30/07
Web site:

Association for Locked-In Syndrome - French (also in English)

Elle Magazine


  1. I recently saw a piece on television about "locked in syndrome" and found your post very interesting and informative. I would like to read the book "Diving Bell and the Butterfly" but wonder if it would make me too emotional or if it would help. Probably help, the courage of others usually does.

    As for long-term health care, I know first hand what you are talking about. A year and a half before I became ill, my husband lost his job of 35 years and had to start all over again, at half the salary. Then I had to quit my job. My husband's insurance won't touch long-term-care so we had to ask for assistance and we have had to fight the system at every turn, having to prove, over and over again that yes, I really do have ALS.

    I wouldn't mind so much but I personally know people, and know of people, who are taking the system for a ride. It angers me that they can't seem to tell the difference. And, as my doctor stated, the money wasted on paperwork in an effort not to spend money would shock us. Not.

    Ah, this was supposed to be a short comment, unfortunately all you have to do is mention "the system," any part of it, and I see red.

  2. Life can be soooo damn hard sometimes! WEll, Most of the time if you have some kind of catostrphic illness....This certainly is an amazing story of determination in spite of terrible horrific odds....! The Human Spirit---Always Amazes Me!!!
    Very very interesting post Joarad...!

    FYI: Those fruits, kind of Burst Open wqhen they are ready to be eaten...So the Wide Mouth Gap, comes from that fact....! I LOVE the deep color of these particular fruits....And as I said, I've tasted it and it is deeeeee-licious! I am so happy the Birds find it and have such a feast!

  3. Pam: Concidentally to my posting, I viewed a CBS-TV "60 Minutes" segment last night (11/25)titled -- 'Awakenings: Return To Life.' This video describes how some previously unresponsive patients regained some skills with the administration of medication not used for this purpose before. There are some similarities, but also some differences between those patients and the individuals referenced in this post. You may view that video at this link:

    I wouldn't presume to know how any one individual might respond to reading this book, but perhaps it depends somewhat on the person's approach to the author's story. A value is present in recognizing non-verbal communication is possible. Computers and special adaptive tools, new research to actually engage the thought process and translate the message to others via tech equipment recognizes and gives hope that expression is still possible beyond the alphabet board and system the book's author utilized.

    Developing similar skills can be helpful for some if the need ever arises. Basically, whatever our circumstances, I believe it's important to continue life as we all strive to do -- living for the day and enjoying the moment. You do this so delightfully well on your blog while honestly sharing your experience.

    oldoldlady: Catastrophic illnesses present challenges for which I would like to see our health care system provide a safety net.

    That cacti fruit, especially in your photos, coupled with your testimony, convinces me that I want to taste some.

  4. An interesting Pam, I am amazed at the courage of others.
    To answer your question on my blog: I don't know Edie Johnson from my ABC days in NY City. I was with WABC radio altho we worked closely with the TV end of ABC that was just getting established then.

  5. I saw the 60 minute piece. It proves what I believe, that you really do need to live each day to the limit, for as easily as bad things can happen to us, good things can happen too. And that there is always hope. The hope of a cure and if not that, then the hope of finding ways to manage.Re: Bauby's book.

  6. ginnie: I like to think I'm able to cope and adapt to any situation, but realistically, I wouldn't know until I was actually faced with whatever the challenge. Thanks for answering my question about a special friend, now deceased.

    pam: You said so succintly what I think is so important for all of us to remember:

    "I believe, that you really do need to live each day to the limit, for as easily as bad things can happen to us, good things can happen too. And that there is always hope."

  7. I must buy myself Bauby's book for xmas...although I know I will doesn't matter...we need to get informed and educated. Thanks for that post.

  8. Well I'm so excited about the film festival in Santa Fe... Missed this one on Friday night, drats. I'm hoping it comes to Santa Fe in December when it goes into wide release.

    mment is from a nonBlogger, with a link only back to my site via my inserting it in this place by handwriting the coding MotherPie which is a real hassle.'

    Blogging has stimulated conversation but Blogger, by altering the commenting structure, has limited comments only to Google's bloggers using the Blogger platform. Crummy move, Google/Blogger. See my post on this: Blogger Comment Changes Stink. Period. Use Haloscan.


    TVNV video piece about Nick.

  10. (I think I am headed back to Haloscan as well).

    HAven't read the book or seen the movie, but might. But, I imagine it will taek no small amount of intestinal fortitude to explore some of the issues - scary to think about for sure.

    Thanks, Joared!

  11. I read his book a few years ago and it made a huge impact on me. I too hesitate to see a movie from a book but do want to see this film.

    My husband had 2 strokes before the one that killed him, he had cognitive and speech disabilities - I know firsthand how the system works to "rehabilitate" those who need speech and other such therapies.

    Thanks for this post.

  12. matty & pattie: You and others here have raised an interesting thought about how we react to the stories of individuals coping with challenging medical issues. They teach us to value what life is all about with such positive attitudes, I think.

    motherpie: Look forward to your account of the film festival on your blog, also The Diving whenever you're able to view it.

    I'm unhappy, also, that others find visiting my blog (and other Blogger blogs) so difficult. I may need to explore another home for my blog, too.

    tl: Thanks for this link to Nick. It's excellent and I love his spirit, the devotion of those who support him. We should all have such good friends.

    suzann: Am sure you have a unique appreciation of Bauby's book as well as the issues involved in navigating the health care system given your husband's situation. I can only hope the system functioned as well as possible for you and your husband.

  13. What an interesting subject. I checked it out and saw that the movie had indeed been on French screens but it must have been for the shortest time, because I didn't even notice it, and I do go to the movies a lot and check out the movie programmes every week.
    I will try to rent the dvd, as it doesn't seem they are showing it in France at the moment.

    As for, they make me so mad.
    All I can say is that there is an alternative. You can go with haloscan. I did, when my blog was still on blogger.
    Claude from Blogging in Paris