Art

Chronically ill patients chronicle their story in art

01:00 AM EDT on Wednesday, March 21, 2007

By John Castellucci

Journal Staff Writer

PAWTUCKET

People suffering from long-term sicknesses don’t often make works of art depicting their condition. The trouble, pain and distress that the disease causes usually stays in the hospital, hidden from view.

On Friday, a mural displaying aspects of chronic illness went on display in an art gallery on Main Street.

The untitled artwork was produced by participants in the Adolescent Leadership Council, a program at Hasbro Children’s Hospital that pairs chronically ill teenagers with mentors from Brown University, who are also chronically ill.

It is a brightly colored work that seems inappropriately festive, until you hear Dr. Gary Maslow explain that the goal of the leadership council is to enable teenagers suffering from such long-term illnesses as diabetes, lupus, cancer and sickle cell anemia to learn to live with their disease.

“A condition or illness is a part of you,” Maslow said. “The degree to which you accept that and are able to work with your illness, as opposed to constantly fighting it, can really be important in learning to live your life, not the life that the illness is making you live.”

None of the teenagers who worked on the the mural was at Friday night’s opening.

Undaunted, John Jacobson, the artist who supervised the mural, and Keith Souza and Lauren Holt, the gallery owners providing the display space, rescheduled.

A second opening will take place from 5 to 9 p.m. Friday at Machines with Magnets, the art gallery and recording studio that Souza and Holt operate at 400 Main St. Three other artworks, created by students in the New Urban Arts program, where Jacobson is a mentor, are in the show, too.

The mural is a collage of things significant to the 15 teenagers and dozen Brown students in the leadership council. Some of the things are obvious: A syringe used by diabetics to inject themselves with insulin. Bottles containing prescription drugs.

Other things in the mural are obscure, such as the decrepit barn that the teenage girl suffering from Crohn’s disease, a chronic inflammation of the gastrointestinal tract, included, comparing it to her bowels. Or the fanciful ménagerie that other teenagers in the program created: Lupus the Lobster; the Epileptic Elephant, Asthmatic Armadillo and the Takayasu Turtle.

“They made a whole zoo,” Jacobson said, using modeling clay from a recreation room at the hospital. Armed with disposable cameras, the teenagers photographed the animals and everything else that went into the mural.

Altogether, 250 photos were taken, fed into an Apple computer and transferred from Adobe Photoshop to Adobe Illustrator, Jacobson said. The software made it possible to transform the photographs into vector-based drawings that were layered, printed using an ink-jet printer and applied to a big mirror panels to make up the mural, Jacobson said.

“It’s almost like a visual portrait of TALC,” Jacobson said, using the acronym for the Adolescent Leadership Council. “All these personalities, computers, all connecting together…. This is a portrait of things that are significant to them and say a lot about TALC.”

TALC was founded last year by Maslow and Dr. Wendy Froehlich, who are residents in pediatrics, psychiatry and child psychiatry at Hasbro; and by Kim Alexander, a photographer.

Maslow said the teenagers meet once a month, discuss issues related to their illnesses and offer feedback to the medical community.

The feedback is important, Maslow said, because doctors are trained to fix acute problems, not help the chronically ill live with their disease.

“When we do encounter human sickle cell [for example], it’s usually because they’re in crisis, they’re in the hospital and they’re really sick,” Maslow said.

“They can’t tell you anything about their life. All you know is that they’re in a lot of pain,” Maslow said. “You see them as ill, as helpless and needing medications, as all these kind of very dependent things.”

TALC provides doctors with another view of the chronically ill, one that doesn’t emphasize their helplessness. “You meet these kids and they’re doing this art project. They are so impressive,” Maslow said. “They are so talented and they are so strong.”

jcastell@projo.com

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