Recently I have had a number of interactions where people have made comments or asked me about my vitligo. I have had this disease since I was born. As I grew up as a child, the disease spread until it became prevalent about the time I started grade school. I began getting treatments which involved taking (at that time) topical oxsoralen and spending 15-30 minutes in a UV light box. As I grew older, the treatments involved taking oxsoralen by mouth and then having the same treatments in a UV light box. It has been over twenty years since I have gotten these treatments. Since then and before I have been diagnosed with several other autoimmune diseases. These include pernicious anemia, type 1 diabetes, and hypothyroidism. With the vitiligo I have been diagnosed with, the immune system is attacking pigment cells which causes patches of “white” skin. The truth is that those with white skin actually have more melanin in their skin than I do in the patches that the vitiligo has affected.
About a month ago, I was at a restaurant where the waiter commented on my vitiligo by saying something like, “That’s so cool.” I thought, “What is he talking about?” I looked at my phone. He said, “No, your skin.” At first, I was taken aback. For a greater part of my life, when someone asked me about my skin, I became very defensive. What I’ve come to realize is that people are really asking questions because they don’t know. Vitiligo is rare enough that many people haven’t seen someone or known someone who has it. Even yet, many people haven’t been able to ask those questions that are running through their mind. It’s unnerving for me to have people view this as “cool” or as someone else referred to it “boss.” The interesting thing is that as long as I can remember, I’ve been praying for this disease to be healed. Maybe the healing that I so sought needed to begin in my heart.
What follows is an excerpt from a book I am writing. In essence it will be the first volume of my autobiography. I got the idea to write my autobiography in several volumes from reading the works of Maya Angelou, who recently passed. So this is opening the door on how I viewED myself and honoring one of the greatest writers I have ever had the pleasure to read.
Later on, during that first year at Peyton Forest one of my new classmates asked me about the vitiligo which I was born with and was now spreading over my face, hands and legs. My mom tells me that there was a small spot on my butt but she and my dad didn’t realize it would grow to the degree that it did. About that time, it was becoming more noticeable and my mom started taking me to a dermatologist, Dr. Wilborn, to get it treated. The treatments consisted of the application of topical oxsoralen followed by exposure to UV light in a light box. This treatment is commonly known as repigmentation.
When Marlon asked me about it, I told him it was a skin disease. “Is it contagious,” he asked? “No, I replied. You can’t catch it.” “Does it hurt,” he asked. “No,” I responded. Why all the questions? Why was he singling me out? Healthy and emotionally grounded children are generally curious about the world around them. When they don’t understand something, they ask questions. I, however felt isolated. I was the center of attention. All eyes were on me and I did not like it. I never have. Some people seek out attention as the “be all to end all.” You can have it. I’d much rather stay in the corner of the room and go unnoticed.
At some point, after this day my mom asked me about what had happened. I recalled the incident, with great embellishment. Once while I was attending S.L. Lewis elementary in College Park, a young girl, Qui, referred to me as a “spotted pig.” I didn’t hear this from her directly, but from one of her close friends. And to think, I actually had a crush on her. I know it was true, because she never had a kind word for me. If I raised my hand to answer a question in class, I was trying to be the teacher’s pet. I recall her telling me, in so many words, that she really didn’t like me.
So there I was recalling the events of the day to my mom and the words just came out, “spotted pig.” Marlon really didn’t mean any harm. He was just asking a question. What he didn’t, nay couldn’t have known was that his questions put me in a position where I felt uncomfortable. I felt so uncomfortable that when the incident was recounted to my mother, he would become the villain. The worst part was that my cousin Brian overheard the story. Marlon would have to answer to Brian for insulting his cousin.
At some point over the next day, Marlon asked me why I told Brian what I did about our conversation. I can’t even recall what my response was. I just know I was taken back to what Qui had called me and I thought I was going to be isolated and singled out for scorn.