'Lorenzo's Oil' -- and Lorenzo's Courage

Sunday, June 15, 2008

It's not often that one stumbles home from a long night out to find an e-mail with the subject line, "Oh my God, I read today's BBC headline and totally thought you were dead."

On May 30, I returned to an in-box full of such communiques from old high school buddies, current co-workers and even a friend from Israel whom I hadn't spoken to in months. Lorenzo Odone, the 30-year-old Fairfax County man who survived a dire childhood diagnosis of adrenoleukodystrophy, had passed away earlier that evening; my friends had confused his identity with mine. For six months of my life, I had done the same.

At age 6, about the same stage of life in which the real Lorenzo started to show symptoms, I played the title role in the 1993 film "Lorenzo's Oil," which told the story of his and his family's struggle with then-obscure disease ALD. Though I was old enough to know that I was only acting, it became increasingly difficult to separate the terminally ill child I was portraying on screen from my actual self. On the set, I wore a bald cap and a hospital gown. I was fitted with contact lenses that deliberately blurred my vision and an ear microphone designed to make me slur my speech. Some of my friends avoided me because they were afraid my spectral ailment was contagious.

As the shoot wore on, the script -- and my spirits -- continued to darken. After filming a scene in which Lorenzo falls off a bicycle, I spent the next day getting my stage wounds stitched up, and though I never felt the needle, I howled as it pierced my synthetic skin. I spent hours in a CAT scan tube undergoing imaginary tests, days under the bespectacled scrutiny of ersatz doctors, weeks motionless on a replica hospital bed hooked up to a mock ventilator. Despite my parents' assurances to the contrary, I couldn't shake the feeling that I was gravely ill. When we went to Kenya for additional filming, I came down with dysentery, and my own mother barely survived the malaria she contracted there.

I never met the real Lorenzo, and we've never had much in common. Unable to walk or speak since his youth, he spent the last two decades of his life bedridden at his Virginia home, fighting a terrifying disease and defying the expectations of a pessimistic medical establishment. Meanwhile, I've had the luxuries of health, college and, most recently, the beginnings of a career in journalism.

Yet when I heard the news of Lorenzo's death, I felt a twinge not unlike the phantom pains people sometimes describe feeling in a lost limb. I thought about how tough it was to live a shadow of Lorenzo's life for six months. But what right did I have to claim to comprehend even a sliver of his agony?

And for all the awareness that "Lorenzo's Oil" raised, for all the brilliant performances of Susan Sarandon, Nick Nolte and Peter Ustinov, what did the film do for Lorenzo Odone?

As I pondered, another e-mail appeared. "The real Lorenzo died, I just heard on NPR," wrote a college friend. "What was that movie about again?" I cringed for a moment, but then I smiled. Not everybody remembers the film. But now many remember Lorenzo, a real human being -- far braver than I, and courageous in a way that the rest of us dread having to be.

-- Zack O'Malley Greenburg

New York

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