The Diving Bell
and the Butterfly
is a true story.
Jean-Dominique Bauby,
a 43-year-old Frenchman,
suffered a massive stroke.
He was left with his full mental capacities,
but he lost control of his body.
Literally he could do only one thing—
blink his left eye.
He was victim of what’s called
“locked-in syndrome”—
he was locked in his body.
Arduously he learned to communicate
through the help of a speech therapist.
She devised a special tablet
on which he could identify alphabet letters
by the use of his blinks,
laboriously creating words, then sentences.
In the movie version of the story,
he finally blinks his first message.
It is, “I want to die.”
His caregiver, the therapist, is outraged.
She responds fiercely,
“How dare you!
That’s a terrible thing to say!
I’m not putting up with that.
You think of something else!”

Sometimes we caregivers may not like
what the one in our care expresses
in all apparent honesty.
We may be troubled by what they feel
and by how strongly they feel it.
We may be tempted to respond
in the manner of that speech therapist.
“No, don’t say that!
No, don’t feel that!”
In situations less extreme,
we may find ourselves wishing that
this other person acted happier,
or chose to talk more,
or showed greater interest in life.
Such wishes, and others like them,
can be common among caregivers.
But I’d like to ask this question
of all caregivers, including myself:
Who are such wishes really for?
Entirely for the one in our care?
Or do they involve us too?
How much are our wishes
a reflection of our own needs?
How much are we wishing to avoid facing
the other’s despair,
or the other’s loneliness,
or the other’s fears?
How much are we wanting to feel better
about how well our caregiving is going?
How much are we pushing away,
whether it’s conscious or not,
our own uncomfortable feelings?
True, our desires may relate only
to the one in our care
and not be about us at all.
But it’s worth our looking within
and becoming honest with ourselves
and owning what is ours to own.
The other person deserves that.
So do we.

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