“What would you do if you had no arms? Would you just give up?”
Kirkland resident Zack Stark, 21, poses this question. He has grown up with muscular dystrophy. Giving up is not in his vocabulary — and he definitely uses his arms.
Stark, in fact, hosted his first one-man art show recently at the Audubon Society Building in Seward Park with the help of Providence Hospice of Seattle’s Stepping Stones program. The show’s theme was “Accessible Art.”
When asked how preparations went and if he was nervous, Stark simply said, “I don’t freak out. I never get stressed.” He enlisted a volunteer to help him take photographs and mount frames.
“Zack is creative, inquisitive and so courageous,” said his mother, Koren. “He inspires me because he is able to face all the challenges he does daily and look past it all.”
Despite the four hours it takes Stark to get up and ready each morning for his wheelchair, the debilitating effects of muscle weakness or not knowing how much time he has left to live, Stark is like any other young man. He is interested in movies, politics and art, which has become a lifeline.
His interest in art led to his involvement with Stepping Stones. The program consists of a team of social workers, nurses and spiritual care providers who work one-on-one with youngsters battling life-threatening illnesses. Stepping Stones was created to provide resources and direction, both for the child and the family in areas of financial strain, trauma, depression, transitions and community-based activities.
“When people hear hospice, they think of dying, but we are actually about living,” said Maureen Hogan, Stepping Stones coordinator. “We are a liaison for the patient to the community. We … really have to listen and be open to their goals and dreams.
“When Zack’s talents and interests became clear, our team worked to bring his art show to fruition,” Hogan said, adding death “should not stop them from living incredibly colorful lives. They deserve our support.”
Lyn Miletich, Providence Hospice director of public relations said Stark’s is an amazing person and he is an inspiration. She described his artwork as eclectic — an infusion of many medias.
Stark began dabbling in photography, stained glass, pottery, bead making and glass blowing as a student at B.E.S.T High School in the Lake Washington School District. Better Education for Students and Teachers (B.E.S.T.) is an alternative high school for those students who cannot function in mainstream learning environments.
“There was an extensive art outlet at B.E.S.T for Zack,” his mother explained. “He was able to work with acrylics, beads, oils, glass, kilns and many other things. The art classes were very structured and created a mature artistic setting.”
Stark has also done part-time volunteer work. He sorted and filed papers with other student volunteers at a Kenmore thrift store, Hidden Treasures. “We had to go to various stores and ask about volunteer positions and many people didn’t get it, that we could still function and be a part of the community. Some did and we were given a chance,” Stark said.
His condition was diagnosed at age 3, after his Montessori teacher noticed some problems. Most children diagnosed with muscular dystrophy, a genetic disease, don’t live past their early teens. Those with muscular dystrophy gradually lose the ability to sit up straight, breathe easily, walk or move arms and hands due to the lack of proteins necessary to build healthy muscles. Some, like Stark, have to use a device to breathe at night and a sip-n-puff ventilator during the day. Stark has physical training, massage therapy and a nurse who assists him at home during the day, because he prefers that over staying in the hospital.
His message for peers in similar situations?
“Keep swimming. Keep your will to survive. Don’t let people tell you no or that you can’t do something. Just keep swimming,” he recalled from the Disney-Pixar film, “Finding Nemo.”
Asli Omur is a student in the University of Washington Department of Communication News Laboratory.
