On the morning of April 18, 1987, I came from a birthday party sleepover at a friend’s house and sat on the living room floor to watch TV. My mother was sitting on the couch behind me and noticed a small bald patch on the back of my head about the size of a quarter. Every morning for the next few days, I woke up to a pillow so thick with hair that I had to use a lint roller to remove it. Two weeks later, I had gone from having a full head of hair to a few weak patches near the top of my head.
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| This is me about a year before losing my hair. |
Fourth grade can be tough enough for a child given all of the changes that begin to take place around that time. My fourth grade year was certainly an awkward one: I had new braces and glasses and adolescence with all of its glories lurking just around the corner. Just about everyone goes through those changes sooner than later, but what made it different for me was how quickly I morphed physically in front of everyone’s eyes. There were plenty of questions to be had. Some of my friends and classmates were genuinely curious and concerned about what had happened. Questions from certain others had a bit something less friendly about them. To make things worse, when I was eventually diagnosed with alopecia universalis (an autoimmune disorder resulting in the complete loss of body hair), the dermatologist prescribed a giant pill that was impossible to swallow and a cream for my scalp that stained my face several shades darker than my hands and arms. It is not necessary for me to go through the variety of ignorant and hurtful things that were said and done to me in the years that followed. It was not fun, to say the absolute least. Luckily, it was around this time that I was introduced to theatre and began to develop a love of stories both on the stage and on the page.
I began to read a lot; saw many movies, plays, and musicals. I enacted the stories in front of a mirror in the shelter of my bedroom and wrote scripts for my friends and I to enact and occasionally film. To my knowledge, nothing but one of these scripts ever got produced: we filmed a movie with a friend’s VHS video camera, but that was more of a collaborative effort than an independent script. Nevertheless, writing and stories became a way for me to cope. I kept a collection of journals from fifth grade through high school, which I kept until recently. Some of the writing was about life with alopecia, but much of it was the accounts of the day, or ideas for a new story. No matter the subject, the tone of my writing in the journals was unfettered and real. Writing in those pages helped me to reflect on and express emotions about everything that I was experiencing and, as the stage would later provide, provided a comfortable place to be myself and share my voice.
Now, through my professional life in theatre and in academia, I understand how important this involvement in story was to the development of my maturity and personality. I enjoy seeing that same development in the young playwrights that I mentor and/or whose work I produce; in the energy and confidence with which college students assert their artistry independently for the first time. There is something very powerful in a young person sharing their voice and there is little that can benefit the young writer / young artist more than having their work read and discussed. It is my hope that with the establishment of the Alopecia Writers Club other children with alopecia can find joy and encouragement similar to that which I experienced when I was in their shoes.
The Alopecia Writers Club is currently accepting new members and I hope to have writing prompts and tips going for Club members by the time Alopecia Awareness Month starts up in September. If you know of a child with alopecia, or a sibling of a child with alopecia, who would be interested in developing and sharing their creative writing, please see the Club section of my website for more information, or contact me at jim@jimdevivo.com. (April 2016: Please note that the Alopecia Writers Club is currently on hiatus.)
Now, through my professional life in theatre and in academia, I understand how important this involvement in story was to the development of my maturity and personality. I enjoy seeing that same development in the young playwrights that I mentor and/or whose work I produce; in the energy and confidence with which college students assert their artistry independently for the first time. There is something very powerful in a young person sharing their voice and there is little that can benefit the young writer / young artist more than having their work read and discussed. It is my hope that with the establishment of the Alopecia Writers Club other children with alopecia can find joy and encouragement similar to that which I experienced when I was in their shoes.
The Alopecia Writers Club is currently accepting new members and I hope to have writing prompts and tips going for Club members by the time Alopecia Awareness Month starts up in September. If you know of a child with alopecia, or a sibling of a child with alopecia, who would be interested in developing and sharing their creative writing, please see the Club section of my website for more information, or contact me at jim@jimdevivo.com. (April 2016: Please note that the Alopecia Writers Club is currently on hiatus.)
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