Thanks for visiting "Band-Aides and Blackboards". The intent of the site is to sensitize people to what it's like to grow up with a medical problem. Too often, youngsters so affected must cope with stigma as well as with their medical conditions. Teasing often accompanies this stigma, and adds a layer of pain to their experience of childhood. Unnecessary pain. Pain that isolates. Pain that affects not only the children who look or act or even just feel different, but all of the children in the classroom.
For the past few years, I have been the student, and children have been my teachers. They have taught me what it's like for them to live in bodies that don't always behave, and what it's like for them to be growing up in a world that is too frequently insensitive to their needs. They have spoken about a wide range of dilemmas. For some children, the dilemma is the ambivalence of enjoying extra privileges, yet hating the reason that they're offered. For others it's the shame associated with medical diagnoses and a need that grows from that shame to keep hidden what is not directly observable. For many it's the ache to be popular and the belief that popularity is purchased with the coins of conformity. When that conformity forces children to ignore their need for medication and treatment, and when it demands of them a secrecy that consumes energy as it isolates, the price is very high.
The children who write to me, talk to me, and tell me their stories are children who are bothered to some degree by the social dimensions of their medical conditions. Many prefer not to think about their differences. And not to talk about them, either. Acknowledging them seems to tattoo the reality of the disease, condition, illness, medical problem...you name it, on their identity. What they call it, then, becomes extremely important to them, with certain words having more power to isolate than others. As one child assured me, "I have this condition called diabetes. It's not a disease, because you can't catch it." And from a young man recalling his early school experiences with muscular dystrophy, "what I have is neither a chronic illness nor a disease. It's just a condition that seemed to affect others more than it did me, though I was teased unmercifully for my differences."
The most important thing I've learned from my conversations with children has been that they are first of all children, with the same needs, joys, hurts and misconceptions that all children share. Their chronic illnesses or other medical conditions are part of them, but do not define them. I hope that they will learn as they grow that they can be proud of who they are, and that what's going on with their health is a part of that pride, not something to be ashamed of.
I've tried to help children tell their stories, in the hopes that through the narratives, others will have an opportunity to "walk in their footsteps" for a short time, and will, in the process, begin to understand.
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Hope that you'll let me know!
updated: March 23, 2009