1. Fleitas, Joan EdD, RN

Article Content

"At school, my nickname rapidly became Weaver, after Kerry Weaver on ER, who walks with a crutch. Sometimes that bugs me. Everyone else has nicknames based on . . . the things that they do. Mine is based on what I can't do, on something beyond my control. And I hate being reminded of that. I just want to be normal."


These are the words of 13-year-old Madeline, who in 1994 was diagnosed with Ewing's sarcoma. Madeline's story found an international audience in 1997 on Band-Aides and Blackboards ( contents.html), a Web site "designed to give a voice to children with chronic illness or other serious medical conditions."


Joan Fleitas, EdD, RN, a professor of nursing at Fairfield University in Connecticut, created the site as part of her doctoral dissertation at Columbia University. As a nurse with 25 years' experience and the mother of a child with Down's syndrome, Fleitas has witnessed the isolation that often afflicts seriously ill children. The need to "fit in" is especially powerful in these developing personalities, as are the stress of hiding differences and the shame of receiving special treatment because of them. Says Fleitas, "I developed the site to educate healthy students, educators, parents, and health professionals about what it's like to grow up with the burden of disease or disability on your back. Through narratives, poetry, imagery, a hospital tour, and hundreds of other interactive pages, I hope to sensitize them to the reality that the children and teens featured on the site are much more like other kids than they are different from them."


Designed to be an educational resource for all ages, Band-Aides and Blackboards features the stories of three groups: children, teens, and adults. Fleitas interviews all participants, either by e-mail or telephone, writing and editing their stories and receiving signed approval on final versions from both children and parents.


The site provides valuable insights that can help adults become more sensitive to those with illness. "When I tell [adults] I had cancer," Madeline wrote after her remission, "their entire attitude towards me changes. They move slightly away, without realizing, and either spend the rest of the conversation telling me how brave I am or treat me like a mental defective." It's precisely this attitude that Fleitas seeks to change; and she has won kudos for her efforts. She received first prize at the 2000 Childnet International Awards, which lauded Band-Aides and Blackboards for providing a "rare glimpse of children who have a lot to teach a world too often insensitive to what it's like to be teased and excluded because of difference."


She admits that her project is still in its infancy. She would like nurses to help spread the word, especially to boys, who are not as well represented on her site. As to goals, she says, "I would like all schools to have this as a required part of the curriculum-my main target is healthy kids. They need to see that illness does not define the person,"-a thought that would make Madeline, who died in 1998, cheer.


The Cycle of Health

A bicycle lets a home health care nurse breeze to work.FIGURE

Figure. Anita Prinz,... - Click to enlarge in new windowFigure. Anita Prinz, RN

It may be "just a cheap purple Huffy from K-Mart," but to Anita Prinz, RN, her bicycle is also a portable therapist and a free gym. And it makes her patients smile. Prinz, who has worked for two years for New York's Mount Sinai Medical Center as a home health care specialist, rides her bike to her patients' homes on Manhattan's Upper East Side. "It's great therapy between patients," she claims, and her easy laughter attests to one satisfied K-Mart customer. Her patients "love it-their lives can be so dull and this really amuses them." And it's even a hit back at the office: "When my manager sees me leave the building, she always says, 'Have fun!'" Prinz laughs. "She doesn't say that to anyone else!"-Lisa Santandrea