In February 2009, I was diagnosed with EPP-Erythropoietic Protoporphyria. Before the diagnosis, I realized that anytime I was in the sun, I was uncomfortable. I would feel like I was burning and my skin would begin to swell. I would also get sick and have stabbing pain as a result. So, I began to avoid the sun whenever possible. I cover up, wear gobs of sunscreen, and wear hats etc. but being a hairdresser, I hated that my hair was always smashed, so I set out to find an alternative. I found a great umbrella that I began to use. I often joke that I am Mary Poppins, as people tend to stare and some ask questions. One woman said that I was “vintage chic”. I laughed and thanked her for the compliment.
My umbrella has become my constant companion.
I had this vision of several colorful umbrellas, blocking light and in the shadow underneath, life still goes on. Men, women, and children, moving and being while being protected from the very thing that would seek to isolate them.
Disease: EPP Erythorpoietic Protoporphyria
Date: March 5, 2012