His body is trapped, but never his spirit

WATERBURY, Conn. -- Bob Veillette doodled.

In the endless news meetings that held us captive over at the small Connecticut newspaper at which we worked, he scribbled geometric honeycombs on plain white paper, the effect something like a hybrid of M.C. Escher and Sol LeWitt. I used to wonder where his mind went in those abstracted sketches he made. Perhaps to the Shakespeare stanzas he had memorized, or the construction of jazz harmonies he conceived on piano.

The question has become more poignant now, a year and a half after Bob, my managing editor at the Republican-American here, was felled by a massive stroke. The stroke left him fully aware but mute and paralyzed, imprisoned in his own skin. The stroke hit his brain stem, a kind of neural funnel that pours the brain’s impulses into the spinal cord. Disabled, it leaves the mind blisteringly aware and the body utterly lifeless; hence, its name, locked-in-syndrome.

Bob’s Poe-like condition is the same that afflicted Jean-Dominique Bauby, the French editor of Elle, whose book, “The Diving Bell and the Butterfly,” has now been made into a film by Julian Schnabel. Bauby’s book was “dictated” by blinking his left eye, a system in which I have become painfully proficient. Bob’s former speech, an animated ramble that he peppered with Shakespearean quotes such as “a good deed in a naughty world” and “with malice toward none,” has been reduced to a series of eye movements. His visitor recites a series of letters, “E, T, A, O, I,” used most frequently in the English language. When the visitor arrives at a letter Bob desires, he raises his cerulean blue eyes.

It is a laborious process, and I have learned to curb my temptation to guess. (“Revolt? Is the word revolt, Bob?”) Often, as I jot a long-arrived-at letter onto a yellow legal pad, I remember the lightning liquidity of Bob’s fingers on the computer keyboard, a movement hauntingly reminiscent of his fingers on his piano keyboard, the place where he felt most at home and most alive.

Bill Evans, Dave McKenna, Art Tatum. These were lions to Bob, jazz geniuses along the lines of Chopin, whom he could not listen to without feeling his own inadequacy. I cannot play a lick of piano, but I was an attentive and appreciative audience member, and Bob accepted with delectation the recordings I copied for him, explaining the delicate points of jazz with an animation and precision that enlightened and engaged me. I had not understood how the “stride piano” of Marian McPartland created a particular cadence before. But I now visualize Bob’s simulation of it whenever I hear her play.

Bob and I are Catholic and have a catechist’s predilection for memorization. But I was no match for Bob’s fluency with Shakespeare, whole passages of which he would recite as nimbly as if it were the Nicene Creed. There were deeper divisions in our approach to our faith. I am an avid, though clumsy reader of theology, a discipline Bob adamantly dismissed. “I question everything else in my life,” he told me. “My faith,” and here he slapped his heart. “My faith is something I never question.” I was irritated at his dismissal, and then envious. I longed for Bob’s ability to make the thorny more basic.

Today, I wonder what Shakespeare snakes through his brain, and how stanzas so dear now, like this one, from Hamlet, reverberate with new resonance:

O, that this too, too solid flesh would melt

thaw and resolve itself into the dew

or that the everlasting had not fix’d

His canon ‘gainst self-slaughter.

Self-slaughter, of course, is what many of us presume we would choose over being trussed by our own “mortal coil.”

On the day that I learned of Bob’s stroke, a colleague, dissolving in tears, blurted, “I’d rather he was hit by a truck.” I believe my colleague was thinking of Bob’s restless energy, of his strapping physicality, of his long runs and hypnotizing hours at the piano.

But after a year and a half of Bob’s physical imprisonment, I have learned that the soul is a plucky, persistent beast. In 2005, as the Florida courts were debating removing the feeding tube from comatose Terri Schiavo’s inert body, I remember Bob making an unplugging motion with his arms. “If it were me, zip,” he said.

And then suddenly it was him. And, defiantly, he wanted to live.

When your brain stem has been wounded, surprisingly, there are two things you can still do. You can cry. And you can laugh. In the early days of his illness, when he realized the paralysis was irreversible, Bob cried a lot -- long, wounded howls of anguish that would dissolve a stoic. Today, I tell him stories about the newsroom, and he laughs. Oh, his laughs are messy and contorted, but they are gorgeous.

“I bear my cross ruefully, and with grace,” he said. The mind flies to all manner of imaginary heavens, I have learned. Bob’s flies often back to the piano, where he dreams he is playing again, a favorite song we can recite by heart, Johnny Burke’s “Here’s That Rainy Day:”

Maybe I should have saved those leftover dreams

Funny, but here’s that rainy day

Here’s that rainy day they told me about

And I laughed at the thought that it might turn out this way

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O’Shaughnessy is associate features editor of the Republican-American. She worked with Bob Veillette for 12 years, until his stroke left him disabled. For more information, visit www.bobveillette.com.