Riding the Wings of A Butterfly – Day 202

This is my Flutter fly Pez Dispenser from the Bugz collection. This piece hits home for one particular reason. While i was watching the Pez Heads Documentary, this dispenser was part of the TPD, or the “Traveling Pez Dispenser” project in the movie. This Flutter Fly was used for Epidermolysis Bullosa, a genetic skin condition that is present at birth. It is not contagious. It is estimated that 1 out of every 50,000 live births are affected with some kind of EB. Some babies born with a particular type of EB die in infancy. Many doctors have never seen EB, much less treated anyone with it. The Project has since ended, but for those of you who do not know, i have EB. I have the Simplex form, and I consider myself lucky to have the less severe case of EB. To read more about EB please go to Debra.org. To read more about the TPD project please click here. The reason the flutter fly was used for EB is that, the children are often called “the butterfly children” in comparison of their skin being as delicate as that of butterfly. As for the image and the board, i thought the pinks and purples went well on this miscellaneous board. I really like the diagonal line on the board, i feel that it illustrates how i (along with others who have EB) may feel in certain situations, like contact sports. There is a real division between us and the rest of the world, and being contentious of certain scenarios. I can’t even count how many times that i’ve come home with large scrapes, cuts, and other wounds from general playing with my friends. One vivid memory i have is when i was about 4 years old. I was out with my cousins and uncle. My cousins were learning to ride bikes, and i was walking behind them and i tripped on the concrete. I caught myself, but soon realized i had completely ripped the skin off the palms of both of my hands, from a fall that was nothing more then a typical fall. Other times i can remember (and still have) are when i go for extended walks (like at an amusement park) my feet were covered in blisters after a few hours. I could have the most comfortable shoes and socks, but the constant friction on my feet would ultimately result in blistered toes and heals. I love this piece, and i might be partial to its meaning more so then other pieces i’ve done, but i really do like the final image. If you look close to the image (on the mouth), you can see where i didn’t let the paint dry long enough and pulled up some of that paint layer. This is a great visual on how living with EB feels. I was upset at my actions while making the piece, but now realize things happen, as does life. A scar can still be a visual memory, and i’ve lived my whole life under band-aids. I don’t wish EB on anyone, but having said that I’m glad i have it so i can understand how other people feel with their life situations.

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