More MS news articles for July 1999

A child's-eye view of MS

Art exhibit offers a new perspective

Saturday, July 17, 1999
By Bob Phelps
Staff writer

Multiple sclerosis rarely strikes children directly, but its insidious effects cause many children to suffer.

The disease usually strikes people at the parenting age and often leaves the parent dependent on the child.

This realization is made clear in a national touring exhibit titled "MS - Through the Eyes of A Child,'' a collection of children's art works that are simple but fraught with meaning. The National Multiple Sclerosis Society exhibit is on display now in the Whitemore-Taylor Gallery of the Museum of Science and History on the Southbank.

The content of the drawings and the text each child wrote to accompany the drawings are deep and moving. "It's hard going through life knowing your parent could die any time," wrote Jeremy Chesten, 13, of Morgan City, La. "But you have to shuck everything off and think of what you can do to help them."

The exhibit tells a story of youths struggling to help their ailing parents; it also tells of frustration, tears, fears, coping and love. The disease strikes the central nervous system, generally in people 20 to 40, and it strikes twice as many women as men. Symptoms come and go and range from mere numbness to paralysis and blindness.

The National Multiple Sclerosis Society North Florida Chapter reports that 1,200 people in the Jacksonville area have the disease.

Nicole Leitner, a 12-year-old from Oceanside, Calif., wrote a succinct summary of how MS strikes the families of its victims. In a text accompanying a happy Christmas scene dominated by a woman in a wheelchair, Nicole wrote: "MS is an awful disease that not only hurt my Grandma but almost ruined our family. No matter how loud I yelled and got mad, Grandma couldn't get rid of her MS."

Justine Williams, 8, of Southwest Jacksonville, is the only local child whose art is in the exhibition. She drew a scene of her mother, Beverly Williams, lying in bed while Justine watched television.

The text from her drawing reads: "When my Mom is sick, I am very sad, because I don't want her to be this way. Because of the disease, my Mom can't take me to the beach or do other things like that. When my Mom is in the hospital, I worry a lot about her, and sometimes I cry." During an interview at her home, Beverly Williams' eyes moistened as she talked about how her disease has affected Justine.

"It hurts me so much that she's missing out, that I can't do those things with her," the 27-year-old mom said. ''I know it hurts her, but she's wonderful. She tells me, 'Mommy, it's OK. I know you're having a bad day. I love you. Don't worry about it.' She's wonderful."

A neighbor, Buddy Knight, said whenever Justine comes to his house to play with his children, she calls home every half hour. "She says she has to check on her mom, and she does," Knight said.

Beverly Williams is divorced and said a family friend, Pat Shepherd, has been a great support to her and her child.

Williams is in a stage of remission. In battling the disease for five years, she has been paralyzed, then wheelchair-bound, then supported herself with a walker, then a cane and now she is up, walking and working in her housecleaning service.

There is no predicting when the disease symptoms will return, but she said she knows they will.

"Steroids and physical therapy brought me back,'' she said.

"Eventually it'll come back. They can't tell you when or how long it's going to be. It's different for different people. It's just a mystery to everybody. You can't plan ahead. You have to take one day at a time."

Justine, an A-B honor roll student at Jacksonville Heights Elementary School, said she drew the picture at a camp for children of MS victims that was sponsored by the North Florida chapter of the MS society at Camp Immokalee in Keystone Heights.

"When I went to the camp this year, they had us take off our socks and shoes and told us to hold a pencil between our toes and to pass it to each other to see how how hard it was for people with MS to balance," Justine said. "We got to ride in wheelchairs, and we put our writing hand in a sling and had to write with the other hand. We had to wear glasses with wax on them. It helped me to learn why she wobbles and why she has all these troubles and why she can't see well."

Justine has helped her mother up when she has fallen and cared for her in several ways when she was bedridden, from making lunch to giving her medicine. She has even helped her on the job housecleaning when she's not in school.

While Justine is a cheerful child with a quick smile, she said, "Sometimes Mom doesn't want to go to the hospital and she knows she has to, and she cries a little bit, and that makes me cry."

Joshua Grizzell, 7, of Carthage, Ind., wrote about how children feel when their parents suffer. "It hurts me when people stare at her in the wheelchair," he wrote. ''People don't understand people with MS. People look at her and say, 'You're doing good.' But on the inside, I know Mom doesn't feel good." One child's drawing has no accompanying text. It was dominated by a big black cloud and a lightning bolt striking a person in a wheelchair. The person is saying, "Oh, no! MS!''

The exhibition will be at the Southbank museum until Friday and can be viewed during regular museum hours, 10 a.m. to 5 p.m. weekdays, 10 a.m. to 6 p.m. Saturdays and 1 to 6 p.m. Sundays.

"This is purely an awareness exhibit and not a fund-raiser,'' said Barbara DeWitt of the North Florida MS chapter. Museum admission is $6 for adults, $4 for children 3 to 12 and $4.50 for senior citizens and military. Children under 3 are admitted free.