The Music of an MRI

And: The Diving Bell and the Butterfly by Jean-Dominique Bauby

“Reading is like thinking, like praying, like talking to a friend, like expressing your ideas,
like listening to other people's ideas, like listening to music, like looking at the view,
like taking a walk on the beach.”

―Roberto Bolaño, 2666
(translated by Natasha Wimmer)

I re-read one of my favourites, a memoir unlike any other, The Diving Bell and the Butterfly by Jean-Dominique Bauby (translated by Jeremy Leggatt) and wanted to tell you about it.

Once a year or so, I get a series of scans — I call it scanning season. This is because I’ve had cancer.

I appreciate the care, understand that I’m fortunate to receive it, and I hate it.

Last year, during scanning season, I tried to focus on being grateful. I am. However, being grateful is fleeting. Trying to be grateful for an extended period, for a set of scans over months, became like forcing a smile. Unconvincing.

So, I’ve been looking for another way to think about scans. Before an MRI last week, I picked up my battered copy of The Diving Bell and the Butterfly.

My much-loved copy, The Diving Bell and the Butterfly

In 1995, Bauby was 44 years old, living in Paris and working as the editor of a glossy women’s magazine. A catastrophic stroke changed his life.

When he woke, he found himself in a hospital bed with ‘locked-in syndrome.’ He couldn’t speak or move, but his mind remained intact. “Imprisoned inside his own body,” he could only blink his left eyelid.

The Diving Bell and the Butterfly is short, my copy is 139 pages, and about Bauby’s experience of waking to realize he was paralyzed.

To communicate, Bauby had a system using a “hit parade” of the alphabet (his sense of humour also remained intact). Each letter was placed according to its frequency in French, E-S-A-R-I-N-T, etc. His publisher sent someone to transcribe. They would call out each letter and Bauby would blink when they arrived at the one he wanted.

That’s how he spent the end of his life, writing by blinking his left eye.

Each chapter is short. Bauby starts by describing his daily life in the hospital, but he goes on to fill in details of his life. It feels honest, raw, and not always flattering. There are moments of beauty, like the last days he spent with his dad.

The title, The Diving Bell and the Butterfly, comes from Bauby’s breathing machine, which to him looked like a diving bell, the old-fashioned equipment that provided air for deepsea explorers. Instead of feeling weighed down by the machine, he found a way to take flight like a butterfly — in his mind:

“You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.”

I love this approach. It isn’t sentimental. There’s no transformation. It’s simply about paying attention. And the possibilities are endless.

As Bauby writes, “what if I asked to be changed into a frog? What then?”

After re-reading this book, I went to my appointment and lay down in the MRI machine.

Some of you have been through this. The technicians tell you to relax. You have an IV in your arm and a warning that cold fluid will shoot into your veins halfway through. Once strapped in, the bed slides into a confined tube. There’s a slight breeze, thumping, and the sound of your heartbeat.

And then the machine sounds start, beeping, clanging, banging. They are loud, up to 120 decibels, like a siren or motorcycle. It’s startling.

Relax? No. But, I did try to listen.

I started hearing a steady beat, something chugging, and then blaring sounds that rose to a peak. I thought of a club when things are about to get going. The lights flash, people sway, and the DJ teases the crowd by playing bars of a melody — the moment just before the beat takes off.

After steadying myself, I found a melody to accompany the chugging. There were no lyrics. I did, though, find a tune to string the noises together and something like a chorus and a bridge. I’m overly optimistic when I say my song was an riff on Ooh La La by Goldfrapp, but I could hear it.

I’m not the first to have this idea. Composers Mira Calix and Anna Meredith made a similar experience into something beautiful. Danny Elfman took things up a notch.

I’ve lost any memory of my song, but I don’t need it for prosperity. It brought my attention forward. I became aware of the moment. My mind was able to lighten and take flight.

That’s art? Taking an experience and making it into something.

It’s this book, The Diving Bell and the Butterfly. You will never forget reading it.

What I love the most is the implicit question Bauby puts to a reader: If these are the edges of my life — how will I best spend my time?

Much book love,

Claire

P.S.

• People Line Up: [Gift link] In The Globe & Mail, I assembled this piece using more than 30 stories of the personal experiences of food bank clients, volunteers, and staff. Each line is a quotation.

• I’m always looking for things to watch as a family (teenagers are the harshest critics). 3 Body Problem on Netflix, based on Liu Cixin’s trilogy, did the job. Emily Nussbaum, who writes for The New Yorker, called it “a very destabilizing blend of lively philosophical sci-fi & mawkish BS!” — meaning, she enjoyed watching it with her family as much as I did.

• If you use Spotify, they have just added audiobooks. With a premium subscription, you have 15 hours of listening per month. One of the books is Knife: Meditations After an Attempted Murder by Salman Rushdie. The first chapter, 1 hour of your allotted time, is a stunning account of when he was attacked on stage in 2022. Told in first person, it’s clear, brunt, a slice. Some of his best writing, I think.