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For more than a decade of sometimes joyous, often difficult summers beginning in 1992, I traveled the U.S. alongside a famous entertainer who had aphasia. Many people aren’t familiar with the condition or the sadness that can accompany it. It is challenging enough when the sufferer is a private citizen. When it’s a performer still appearing before audiences, courage becomes a job requirement.
Bruce Willis’s family said this week that the actor is retiring because of aphasia. Mr. Willis’s family didn’t disclose what led to his diagnosis. Causes can include a stroke, a tumor or a severe brain injury. Common symptoms are being able to speak only in short or incomplete sentences, mixing up words or saying things that make no sense to listeners.
The man with whom I spent all those summers was Jan Berry, half of the surf-rock duo Jan and Dean, who in 1963 had the national No. 1 hit “Surf City.”
In 1966 Berry was the driver in a one-car accident that mirrored the 1964 Jan and Dean hit “Dead Man’s Curve.” He bore the aftereffects, including aphasia, until his death in 2004.
It is a cruel affliction. For someone like Bruce Willis or Jan Berry, the world can abruptly become filled with strangers who were primed to adore you because of your work, and who now gaze with perplexed expressions, not knowing what to make of what they’re seeing.
You speak, and often what comes out is disjointed and confusing. There is nothing you can do about it. Someone—perhaps a fan—asks a question, and, without meaning to, you appear to mock him by answering illogically or
After the announcement by Mr. Willis’s family, I watched snippets of recent movies in which he appeared. Some of the reviews verged on cruel. My guess is the critics had no idea what Mr. Willis may have been dealing with. In some of the movie scenes it seems as if Mr. Willis was filmed separately from his fellow actors, reciting one- or two-sentence lines. I looked at his celebrated face and saw the face of Jan Berry.
On flights from one concert town to another, Jan would wear headphones and listen intently to Jan and Dean songs. It wasn’t out of ego. He was trying to remember the words. He had written those lyrics long ago and sung them on records that sold millions of copies. The next night every person in the audience would know every word. But he had forgotten and had to relearn them before each show.
A person can conceal aphasia for only so long, as Mr. Willis and his family seem to understand. One night onstage Jan Berry had said, into a microphone, something he didn’t mean to say, something humiliating. He turned to me and, with tears in his eyes, whispered: “I have to think more.” He was blaming himself. It comes with aphasia’s melancholy territory.