Want to Help? Serve with Care and Communication

In what turned out to be his final gift to the world, Jean-Domnique Bauby relayed his impressions of and responses to hospital workers who were responsible for caring for him.  Although only in his early 40’s, he suffered a stroke which left him totally paralyzed except for the ability to blink his left eye and slightly move his head back and forth.  Since he had been the editor-in-chief of a major French magazine, a publisher arranged for a transcriber to decode and record his thoughts for the book we read in English as The Diving Bell and the Butterfly.  He died a few days after it was published about a year after the stroke.  The book has also been made into an award-winning movie by the same title.

The book records an imaginative and rich inner life that the film only partly captures, though the film situates the story in its French setting which will greatly assist Americans reading the book, though it does seem to take some unexplained liberties. 

In this post I want to highlight Bauby’s general comments about hospital staff. He makes particular comments here and there throughout the book, but the comments referred to here have had an effect on me because in them he struggles with his profound dependency on those who are being paid to help him.

We learn about ourselves when we encounter those in extreme need because it forces us to either face the possibility that we could someday be in the same position—or we may choose to ignore our feelings, in effect to suppress them. I work in a hospital; but I only occasionally remember that if I live long enough, I too, will one day be one of those unknown patients being pushed around in a wheelchair.  This book has challenged me to question how I think about those who are unable to communicate normally.

I think Bauby has given his readers a gift.  He has illustrated how hard it is to be in such great need, and how angry it makes a person.  Yet he shows how forgiving a needy person can be in spite of that anger when we continue to act with even just a degree of care and responsibility. We do not have to be perfect and we can accept each other when we are far from perfect. Yet we can still aspire to do better!

Here are the key excerpts from the 1997 edition…

As the weeks go by, this forced solitude has allowed me to acquire a certain stoicism and to realize that the hospital staff are of two kinds: the majority, who would not dream of leaving the room without first attempting to decipher my SOS messages; and the less conscientious minority, who make their getaway pretending not to notice my distress signals. Like that heartless oaf who switched off the Bordeaux-Munich soccer game at halftime, saying "Good night!" with a finality that left no hope of appeal. (p. 40-41)

 At first some of the staff had terrified me. I saw them only as my jailers, as accomplices in some awful plot. Later I hated some of them, those who wrenched my arm while putting me in my wheelchair, or left me all night long with the TV on, or let me lie in a painful position despite my protests. For a few minutes or a few hours I would cheerfully have killed them. Later still, as time cooled my fiercest rages, I got to know them better. They carried out as best they could their delicate mission: to ease our burden a little when our crosses bruised our shoulders too painfully. (p. 110)

…I realized that I was fond of all these torturers of mine. (p. 111)