•  Book Review: My Stroke of Luck •  Stroke

My Year Off: Recovering Life After a Stroke
By Robert McCrum
Broadway Books
256 pp Paperback $13

The Diving Bell and the Butterfly
By Jean-Dominique Bauby
Vintage
144 pp Paperback $11

On the morning of May 9, 2002, I awoke groggy and disoriented. Stumbling out of my bedroom in a daze, I found my wife Francie dressing our 4-year-old daughter, Abby, who was late for preschool. Relieved that I was finally up and available to assist, Francie asked me to finish putting on Abby's shoes.

What did I try to say at that moment, when I discovered that I could no longer speak? I was no doubt attempting to strike that tone of cheery insistence parents routinely employ when bundling their reluctant kids out the door, with a bewildered smile on my face as I discovered my entire vocabulary had shrunk to one word. "Why do you just keep saying 'yes,' Daddy?" Abby asked, returning my smile curiously. She didn't understand which game I was playing.

Two hours later, in the critical care ward of Berkeley's Alta Bates Summit Medical Center, my fears were confirmed: I had suffered a stroke.

I was lucky. There were no obvious physical effects, no paralysis, no evidence of any sensory deficits, no problems comprehending where I was or what people were communicating to me. Just the profound, strangely seductive hush in the normally antic quarter of my brain where before there had been words. My stroke had been mild; I had dodged a bullet. More than likely I would fully regain my ability to talk as well as to read and write, but I would have to be patient, doctors said; it could take a year.

A year.

I was 53 years old on that brilliant spring morning. Two months earlier I had resigned as editor-in-chief of the East Bay Express, the alternative weekly newspaper I had cofounded more than 20 years before. I had thought to take some time off, deciding it was time for a change. But this wasn't the change I had in mind. Not only was I now a newspaper executive without a job; overnight I had become an editor who couldn't read, a writer who couldn't write, a manager who couldn't talk. The irony was exquisite: It was as if God had reached into my brain and, in one gentle stroke had disconnected my ability to do the very things that comprised the core of who I thought I was.

I was in the hospital for only four days. I never experienced any physical discomfort. By the time I arrived back home, my ability to read had improved significantly, but writing was still next to impossible. However, my efforts at speech were bearing fruit. I could usually manage one- or two-word responses to people. Those words were most often "thank you," offered in genuine appreciation of the efforts by my family and friends to build an optimistic context within which to place my experience.

During this first week home two of the gifts I was most grateful for were a pair of memoirs, both written by fellow editors and journalists who also had suffered strokes at a relatively young age. The first was My Year Off, by British editor and literary critic Robert McCrum; the second, The Diving Bell and the Butterfly, was by Jean-Dominique Bauby, the former editor-in-chief of the French fashion magazine Elle.

In the summer of 1995, 41-year-old McCrum, then editor-in-chief of the London publishing house Faber &Faber, was struck by a severe stroke as he was sleeping in his London home. He awakened to discover that he was completely paralyzed on his left side and unable to walk. He spent three months in the hospital before continuing his painful physical rehabilitation efforts at home.

Published in 1998, three years later, My Year Off was McCrum's attempt to write the sort of book he said he had yearned to read in the wake of his stroke: "I have written this book to help those who have suffered as I did, and indeed for anyone recovering from what doctors call 'an insult to the brain.' " During the first weeks of my convalescence, McCrum's memoir was an almost constant companion. Though he experienced a fate far worse than mine, his questions helped to focus mine.

The first question, of course, was "Why did this happen to me?" As soon as it's asked, however, that deceptively simple query fractures into a galaxy of other questions, beginning with "What is 'this'?" And, for that matter, "Who am 'I'?"

"This," I have learned, was not an illness so much as an event, a "cerebrovascular accident," as it will always be described in my medical files. In McCrum's book, he recalls hearing from an old friend, a stroke survivor who described the experience as "being caught in a 'biological car crash,' that is, a totally random event, without meaning and quite beyond our control." McCrum says he found this way of looking at his stroke to be comforting and consoling, but in the end he was unable to resist the "… irresistible allure of the grandiose explanation ..." "I can't help flirting with the idea," he writes, "that my stroke was an event that was somehow coming to me, that it was, in some inexplicable way, my destiny."

This idea, in turn, raises what McCrum calls "the ultimate question."

"Who am I?" he writes, "is ... a question that every one of us would be wise to face up to at some moment in our lives." But who exactly is it that's asking? McCrum continues: "I still wonder if the 'I' who is typing this with my good right hand is the same 'I' who used to peck away, two-handed, at 50 wpm."

Precisely. If my brain is master of all things, the seat of me, what am I to make of the fact that one hot morning in May, that brain was forever altered. Everything was different, as we were getting used to saying in those post-9/11 days. There would be, for me, no more business as usual.

"Having a stroke," McCrum writes, "was like having one's personal wiring ripped out, the electricity of one's body fails, and the wiring of one's association with the world also. So the things that had once seemed so important for everyday existence no longer seemed important at all. At this time, I was in a mood of existential crisis, a mood that can still easily recur, lending the world a strange provisional air, even now."

Whether seen as a random accident ("I dodged a bullet") or as message from God or the universe ("It was a wake-up call"), even a mild stroke constitutes a brush with death. For the relatively young, it may mark the first unavoidable occasion for mortal reflection -- and the first experience of the intense loneliness such reflection inspires. The abrupt physical failure that constitutes a stroke is an undeniable precursor of the ultimate corporal demise we will all experience -- and experience alone. "A dramatic illness," writes McCrum, "emphasizes our solitude and isolation." Learning to live with the certain knowledge that one's existence can change suddenly, catastrophically, and irretrievably at any moment lends life a character that is at once sweet, sad, and terrifying. McCrum thinks of loved ones he will never see again. "If I had a headache at night," he recalls, "my first thought was: I'll be dead in the morning; I'll never see Sarah again."

But there is another facet to the story. Reflecting back on the absence of panic at the moment when he experienced his closest brush with death, McCrum writes that he now knows "what it feels like to be carried away, helpless, toward oblivion. ... The residue of nearly dying, and of being conscious through most of the experience, feeling detached and quite serene, is that the world still seems painfully vivid and precious." Of his first hours in the hospital, he reports, "All I felt was a rather blissful detachment and serenity."

When death finally comes to us, then, it will be in the form of immutable, inevitable fact, obviating any argument or protest. As frightening as it still is for me to recall the morning of my stroke, that recollection also includes an almost physical memory of calm. As it turned out, it made little difference that words failed me in that moment of mortal peril. In the end, there is only surrender and curiosity.

For me, as for most stroke survivors, the visit to that mysterious realm that lies between death and life was mercifully brief. For Jean-Dominique Bauby, it was an extended stay. Bauby's life as a Parisian fashion editor was brutally interrupted when, at the age of 45, he suffered a massive stroke while driving through city traffic after picking up his young son. Bauby lay in a coma three weeks. When he eventually came to full awareness, he was in a hospital room in the Breton coastal town of Berck-sur-Mer, completely conscious, and completely paralyzed with the exception of his left eyelid. His condition was described as "locked-in syndrome." "Something like a giant, invisible diving bell holds my whole body prisoner," he writes in a remarkable memoir that he literally blinked out letter by letter. Bauby has no doubt about who he is. He is a journalist sending a surprisingly high-spirited and insouciant travel dispatch from an exotic nether shore.

Deprived of the ability to engage in the restless physical busyness that we so often equate with life itself, Bauby is forced into the realm of his senses and his imagination. To his surprise, he found that he was still alive if not kicking. "My diving bell becomes less oppressive, and my mind takes flight like a butterfly," he writes. "There is so much to do."

Although it was given to me just days after my stroke, more than a year would pass before I could bring myself to finish reading this slim volune. Bauby's fate was too horrible to contemplate. It was like indulging in the macabre fantasies of ruptured flesh and twisted metal that pass through one's mind when one has just narrowly avoided an auto accident. Some fates do indeed seem worse than death. Could that have been me? Is this the shape of the bullet I dodged? Bauby writes of suddenly encountering his reflection in a glass: "Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings on uncontrollable nervous laughter -- when, after a final blow from fate, we decide to treat it all as a joke."

"We decide ..."

On my second attempt, 18 months after my stroke, I found I could not only read these words, but accept the courageous bid for comradeship that is implicitly contained in Bauby's use of the pronoun "we." I no longer felt the need to wall my experience off from his. Bauby blinked his first dispatch to the world beyond his hospital after hearing from friends that he was being described in the haughty environs along the Boulevard St. Germain as being "a total vegetable." Paris, he writes, "that monster with a hundred mouths and a thousand ears, a monster that knows nothing but says everything, had written me off. ... I would have to rely on myself if I wanted to prove that my IQ was higher than a turnip's." Not only did Bauby disprove the cruel gossips, he wrote a book that critics have described as a masterpiece and a jewel of prose: witty, heartbreaking, and poetic. "Everybody now understands that he can join me in my diving bell," he wrote, "even if sometimes the diving bell takes me into unexplored territory."

I count it as a sure mark of my recovery that I can now accept Bauby's invitation.

-- John Raeside is a freelance journalist and the former editor-in-chief of the East Bay Express.

First published September 15, 2004
Last updated October 30, 2008
Copyright © 2004 Consumer Health Interactive

Back to top of page