Denis Asselin is on a journey to raise awareness of brain disorders and the traumatic effect they have not only on patients, but on those who care for and love them.
One year ago, Asselin, of Cheyney, Pa., lost his only son, Nathaniel, to suicide after a 13-year struggle with Body Dysmorphic Disorder (BDD), a disease on the Obsessive Compulsive Disorder (OCD) spectrum. Now, Asselin has embarked on a 500-mile pilgrimage from his Chester County home to Boston in an effort to talk to people about the disease and stop at places his son visited during his short life.
One of those places is KidsPeace, where Nathaniel was hospitalized when he was 11 years old. Asselin calls it the first chapter in the lengthy saga of his son’s illness. Asselin, who has been walking since April 24 and has logged about 130 miles, arrived at the Children’s Hospital today and met with members of the hospital team to share his story.
Right after his son died, he and his wife, Judy, and daughter, Carrie, walked the ancient pilgrimage route of Camino de Santiago in Spain. He described that as a deeply spiritual experience that helped him work through some of his overwhelming grief.
“I needed to ground my feelings from having lost Nathaniel,” he said.
His initial plan was to return to Europe to walk again in his son’s memory, but it didn’t feel natural. Instead, he said, he wanted to set out from his home, as a true pilgrim. And so the idea of stopping at places that were both highlights and times of immense sadness in his son’s life – the hospital where he was born, an elementary school, his psychiatrist’s office, various hospitals – was born.
He has had some company along the way from people who have met him along his path. Anyone who is interested can track his progress in a blog on http://walkingwithnathaniel.org. His wife, Judy, is going to walk the Bethlehem to Easton leg of the journey with him this weekend.
While the walk, which he coined Camino de Nathaniel, brings him a measure of peace in the midst of his grief, Asselin’s greatest goal is to “bring brain disorders out of the closet.” As he walks, he carries with him a scallop seashell, which symbolizes that “there are many paths to one place.” The shell also adorns the cover of a pilgrimage passport his wife designed for him that he’s using to collect signatures of people he talks to along his journey.
BDD, which affects males and females equally, is often referred to as “broken mirror disorder,” Asselin said. Sufferers will fixate on their image, studying perceived flaws such as facial symmetry or blemishes that no one else would see. Nathaniel’s illness progressed to the point where his family had to remove all mirrors from their home. But when Nathaniel first got sick, the Asselins didn’t know their son was struggling with BDD. He was running compulsively, not eating as much and had lost a lot of weight.
“The whole idea was to get his body weight up and to find a medication that would quiet the messages he was hearing,” Asselin said.
It was years until professionals could pinpoint that Nathaniel was fighting BDD. Asselin got emotional as he described leaving his son at KidsPeace for that first hospitalization. He calls it the end of his son’s childhood.
“He was 11 years old. He was scared, and we were scared. As parents who love their children, you’d do anything to take that illness away from them,” he said. “As a parent, you live in the arena of that disorder. I had para-BDD.”
Nathaniel was put on medication that helped him for a few years, but it also came with side effects. He would tell his parents, “'Sometimes I feel like I’m moving through gauze,'” Asselin said.
The hardest part is that other people couldn’t see his illness. When they looked at Nathaniel, Asselin said, they saw a tall, handsome, intelligent young man. This is what Asselin wants to convey – that mental disorders need as much attention and are just as real as physical ailments.
And he said parents and caregivers need to be allowed to be involved in their children’s care. He and his wife often felt they were pushed aside by medical professionals who had more book knowledge of the disease, even though they lived with its manifestation every day.
He said his son, like others with mental illness, gave everything he had in the fight against BDD.
“He was a warrior,” he said. “There’s such integrity in a person’s mental illness. It’s not as if they’re not trying hard. He was always giving it all he had, but it wasn’t sustainable.”
He described it as a series of advances and backslides, but every time Nathaniel started to make progress, that just meant he had that much further to fall when the disease got the best of him.
Dr. Andrew Clark, the hospital’s medical director, said hearing Asselin’s story reinforces the work he does every day. He echoed Asselin’s sentiments that the public needs to appreciate the struggles of young people with mental illness.
“It’s the most vulnerable field, taking care of the most vulnerable patients,” he said.
Asselin left KidsPeace this morning, heading for Mt. Sinai Hospital in New York, where he has an appointment on May 13. His final stop is a June 7 rally in Boston, which is sponsored by the OCD Foundation.
Since Asselin has set out on his journey, he has found that when he shares his story, others often open up to him in return.
“It’s as if I’ve given them permission to say what’s on their heart. And if I’ve done that, I think I’ve already been successful,” he said. “I think Nathaniel would be proud of what I’m doing. He’s leading me.”
Photo Courtesy of Denis Asselin/These shells mark the path of Camino de Santiago.