Getting the word out about a rare disease

Judy Nicholson Asselin

is a middle school teacher and sustainability coordinator at Westtown School

My handsome, intelligent, and remarkable son, Nathaniel, took his own life last year at the age of 24.

For 13 years before his death, Nathaniel had suffered from body dysmorphic disorder (BDD), a severe brain disorder that affects an astonishing three million to five million Americans, striking most in adolescence. The BDD suicide rate is 45 times the rate found in the general population, according to one study, and twice the rate of those with severe depression or eating disorders. Yet this disease is largely unknown to the public, and often goes undiagnosed and untreated.

In BDD, the brain hyper-focuses on the physical details of one's own body, usually the face, and most often the skin, hair, or nose, and fixates on minor imperfections. What sounds like vanity is in fact a debilitating preoccupation with a false perception of the body - an alarm message that one's appearance is unacceptable, grotesque. Those suffering with BDD, like our son, often find schooling, holding a job, or developing a romantic relationship difficult if not impossible. They rarely marry. Since the disorder produces bizarre behavior - hours of grooming in front of a mirror, or mirror avoidance, difficulty attending family and social events, disrupted sibling relationships - the impact on sufferers and families is incalculable. Imagine watching a family member tormented by these false messages day in and day out, year after year.

Unfailingly kind and universally loved, Nathaniel could make people laugh like no one else. He had special compassion for those with disabilities, perhaps sensing kinship with their struggles. A teacher's dream in school, he achieved accolades in all subjects and ran varsity cross-country and track even as a freshman. By age 17, when the disorder dominated his life, he bore it with courage and fierce determination. He was the definition of grit.

Even with the advice of leading BDD experts and the best treatment available - cognitive behavior therapy (CBT) with a series of highly skilled professionals, and trials of medications in various combinations over a decade - Nathaniel's spirit was gradually ground down by his brain's unrelenting focus on his skin and the compulsion to cover up tiny spots that were invisible to others. His life with the disorder became untenable.

Shortly after he died, our daughter, Carrie, was scheduled to walk the Camino de Santiago in northern Spain, a pilgrimage route that attracts people from around the world who are facing a life transition or who want an adventure. The pilgrimage was to be her last course at Earlham College, and she asked my husband, Denis, and me to accompany her for two weeks so that we could begin to grapple together with the injustice and enormity of our loss.

Walking 15 to 22 miles a day - sometimes in solitude, sometimes with others - and pushing ourselves to the physical limit day after day became a conduit for our grief. Out of that experience, Denis caught "Camino Fever," the irresistible urge to walk, and the plan for another pilgrimage emerged: the "Camino de Nathaniel."

After the first-year anniversary of Nathaniel's death in April, Denis took the first step out the front door of our home in Cheyney. For 45 days, he put one foot in front of another until he reached Boston - a 552-mile pilgrimage to honor Nathaniel's life, build awareness about BDD, and raise funds for research. The $25,000 raised to date has gone to the International OCD Foundation (BDD is classified as an OCD spectrum disorder) and will cover the cost for half of one study. This is a small gesture compared with the hundreds of millions of dollars devoted annually to well-deserved research into other childhood conditions such as juvenile diabetes or autism, but it is a start.

During his walk, Denis visited every treatment center, clinic, and hospital that had been part of Nathaniel's journey. He met with professionals who are working to bring awareness, woefully needed research dollars, and effective treatment to BDD sufferers. CBT and antidepressants can be helpful, but underlying causes remain elusive, and even with treatment, the condition can be intolerable. MRI studies of perceptual and limbic centers in the brain, as well as genetic research, are yielding clues, but the field is still wide open.

Like a griot in the African tradition, Denis told Nathaniel's story a little differently for each audience he encountered. At Mount Sinai Hospital in New York, he addressed more than two dozen therapists in training, sharing what it was like to be the parent living in the arena of BDD. At the Bio Behavioral Institute on Long Island, he spoke to a group of parents and professionals, and heads nodded in recognition as he described the progression of the illness. Even when Denis thought he had talked enough, people wanted to hear more. When he engaged strangers in conversation while walking, few had heard of BDD, but most were willing to listen. Waitresses paid for his breakfast, total strangers pressed $20 bills into his hand, and fathers with kids in tow teared up and hugged them close.

The pilgrimage also included stops at places of joy: the Bryn Mawr Birth Center, Goshen Friends School, the Shipley School, and Westtown School, where Nathaniel had been a beloved student, teacher, and coach. "Walking with Nathaniel" became one way to transform the suffering that Nathaniel, my daughter, my husband, and I endured during his too-short life into new hope for sufferers and their families. Since the walk, which concluded June 7, we have heard from hundreds of people, evidence that we are bringing this disorder out of the shadows and into the public's awareness.

We need to make some noise about BDD, or as Camino pilgrims say, "Ultreya!" ("Let's go for it!")

at walkingwithnathaniel@gmail.org, or read Denis Nicholson Asselin's blog

at www.walkingwithnathaniel.org.