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BOOKSHELF

A Full Moon Rising

Moonrise: One Family, Genetic Identity, and Muscular Dystrophy by Penny Wolfson

Ansel Lurio ’06 finished his first year at Columbia College in May. Working as an intern at the Disabilities Network of New York City this summer, Lurio is like most other college students who keep themselves busy during the long break. However, unlike his peers, Lurio has Duchenne Muscular Dystrophy, a genetic disease that results in the deterioration of muscles over time. Diagnosed with DMD at 3, Lurio has led a life full of challenges, from the growing physical difficulties that led to his dependence on a wheelchair at 14 to facing the realities of a disease that rarely allows people to live past 25.Lurio’s mother, Penny Wolfson, a freelance writer and professor of creative writing at Sarah Lawrence, has written a number of short essays and has kept a journal since her son was diagnosed 15 years ago, detailing her thoughts and the family’s experiences across the years as well as her research efforts for a better understanding of the disease. In its December 2001 issue, The Atlantic Monthly published a feature piece by Wolfson on Lurio that won the National Magazine Award for Feature Writing. Building on the article and her other essays, Wolfson wrote a book, Moonrise: One Family, Genetic Identity, and Muscular Dystrophy (St. Martin’s Press, 2003, $23.95; available in paperback next year), in which she traces Lurio’s life and the impact of DMD on the their family.

In her book, Wolfson goes into depth about the scientific aspects of DMD and the genetic implications of the disease. Learning that the gene for DMD is x-linked recessive and passes to males from female carriers, Wolfson reflects on her newfound awareness of the disease that links her with her mother, sister, and children. She also discusses the advances in prenatal testing and her experience with CVS, or chorionic villus sampling, during her third pregnancy with her youngest child, Toby, whose test results showed that he would be born without DMD.

The intimate narrative in Moonrise reveals the anxieties and frustrations that Wolfson feels in coping with Lurio’s degenerative condition, even though she showed an unflinching commitment to her son’s well-being throughout his childhood and adolescence. Wolfson uses the symbolism of the moon, first mentioned while referring to a photograph taken by Ansel Adams, who also inspired her son’s name, to depict the uncertainty of whether the moon is rising or setting over Lurio’s life. While the idea of death occupies her thoughts throughout the book, Wolfson hopes that her son can lead a happy and fulfilling life.

At the conclusion of Moonrise, Lurio is 15. Since then, he successfully completed high school and made the leap to college. Columbia was the first choice for Lurio, whose father is Joseph Lurio ’76. Growing up in Dobbs Ferry, N.Y., a 20-minute drive from Manhattan, the young Lurio always has been fond of the city and likes Columbia’s proximity to home. He speaks favorably of Columbia’s handicap accessibility, rating it above-average as compared to many other schools he has visited.

While Lurio found “Physics for Poets” difficult, especially after having skipped some science courses in high school in favor of a culinary class in order to satisfy his passion for cooking, he enjoyed his other courses, most notably beginner’s-level Yiddish. Lurio became close with his suitemates in Hartley-Wallach and hopes to participate more in campus life activities as a sophomore, when he is more accustomed to life at school. Having played clarinet throughout his life, Lurio takes private lessons and hopes to join the Columbia Marching Band next year.

Lurio, who will turn 19 in September, remains unfazed by his condition and maintains an optimistic outlook. “I don’t think about it much. I just don’t let it bother me. I’m in good shape for an 18-year-old with DMD, and I’m not worried,” he says. While no cure exists for DMD, medical advancements, such as the availability of the drug prednisone, have helped those with DMD slow down the deterioration process. Besides taking his medicine, Lurio undergoes physical therapy several times a week and exercises daily on his own, doing sit-ups in his room or swimming at Dodge.

In Moonrise, there are moments when Lurio is depressed and angry about dying early, causing him to throw temper tantrums or misbehave in school. These days, he says he has accepted his fate but does not let it hinder his goals. Lurio plans to major in American studies and attend law school after college to become a lawyer for disabled people’s rights.

When asked if he has read Moonrise, Lurio is slow to reply. “Well, not exactly,” he says. “I’m really proud of my mom for writing it, but I think it’s a bit weird to read about myself.” Lurio knows that his mother’s book has helped raise the awareness of DMD and also has been an inspirational story for other families facing similar circumstances, a story his mother hopes he will continue to write.

P.K.

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