By Elizabeth Horverman
My name is Elizabeth and I am an artist. I am also modern, old fashioned, hardworking and loyal. I am adventurous yet cautious, petite yet feisty.
And I am affected by a rare birth syndrome called ectrodactyly-ectodermal dysplasia-clefting (EEC) and which affects my skin, eyes, teeth, fingers, hair and other systems of my body. You might look at my missing fingers or bent fingers and other skeletal deformities and label me as disabled. But that is not how I or other people born with physical differences see us.
We are complete and complex just like all of you reading this. You are not defined solely by physical features and neither am I. People with disabilities may communicate in a different manner, may hold a brush, pen or computer mouse in an uncommon way or move atypically. We just do common things in an uncommon way.
Color Me Creative
I have always had a passion for colors and working on anything creative. However, I did not formally pursue more direction with art until my last year in high school. I had been having difficulty deciding what path to follow in college and my parents recommended that I take some testing to find out what my natural strengths are.
The results indicated my ability to perceive colors was very high. Now I understood why I always liked to play with color combinations in various ways. My high school teacher accelerated my curriculum so I would have an art portfolio for college applications.
My first choice for college was Bowling Green State University in Bowling Green, Ohio. They were an early leader for featuring degrees with digital technologies and art. They accepted me upon seeing my portfolio and offered me a small scholarship based on my talent. This scholarship would be the first of several financial prizes to date but that’s another part of my story!
Life with EEC
You might be asking yourself how my EEC factors in. Living with EEC has been rough. My parents and I stopped counting the surgeries at 30 that were required to restore or repair function to the various parts of my body.
Each of my hands is missing two fingers and the middle finger is permanently bent. The doctor once told me that I am lucky to have moving thumbs and I would have to agree. The lack of anatomically correct hands has not prevented me from typing or moving a computer mouse. I find my own way of doing things.
I am also thankful the EEC has not had a significant negative impact on my eyesight so far, although I am starting to have difficulty with dryness. My talent for perceiving color differences remains intact.
Summers are difficult for me even though I can sweat. Sometimes people born with ectodermal dysplasia lack sweat glands. In my case, I am allergic to my perspiration and develop itchy rashes so taking photos for my art at that time of the year is difficult.
But the cold winters are equally as punishing because my skin dries so easily and rashes form again. I am continually using specialty moisturizers for my skin and lips.
I also have skeletal problems in my upper neck that prevent me from working but the doctors are not sure if it stems from my ectodermal dysplasia. I am in constant pain in my neck and shoulders despite formal pain management through nerve burns and steroid shots. I have to work at anything at my own pace and should be taking more breaks than what I do!
When I have the camera in my hands a new perspective forms and my pain fades away. Creativity takes over. My hands and eyes communicate with and through the camera in a symbiotic way. And when I look at the images on a computer screen, inspiration guides the computer mouse in my hands into unique forms.
My Award-Winning Art
One of the pictures stemming from this process is “Life in a Raindrop”. It features old wooden bench boards with paint that is chipping away revealing a rough, grey core. Raindrops are forming along the edge and one large drop has already let go.
Inside the raindrops are reflections of a sunset complete with trees and clouds. But, you have to look very closely to see this display, just as you would need to look past my physical differences to see my true nature. There is beauty beyond the gnarled, surface scars when you take the time to look within the character.
I entered “Life in a Raindrop” in a local contest and won best of show. Not too long after that, someone posted information on the NFED Facebook page about a contest featuring artwork from those affected by rare diseases/syndromes such as EEC. The EveryLife Foundation for Rare Diseases annually sponsors this contest as a highlight to the annual Rare Disease Week on Capitol Hill. People come from all over the country to meet with their legislators and representatives to enlighten them about the challenges they face on a daily basis.
My winning streak with “Life in a Raindrop” continued and I was one of the winners in the adult digital art category. My family and I would receive a small stipend to appear at a reception capping off Rare Disease Week at the Senate Hart Building the last week of February. Each of the winners had an opportunity to present their story briefly and to mingle with other winners and the judges. I found out that my entry achieved the Judges’ Choice award.
Winning art from the contest will hang at the EveryLife Foundation’s national headquarters in Washington D.C. and may travel to other national/international events to raise awareness and encourage conversations benefiting those affected.
See me, Not EEC
My experience with the contest was amazing. It made me go out of my comfort zone and speak in front of an audience that I would not normally have the opportunity to speak with. The speech and trip was another small step toward my goal of becoming an internationally known artist.
The opening paragraphs of this piece were taken from the speech I gave that evening. I hope my readers get the sense that those of us affected by a rare syndrome or disease need not be characterized solely by their disability but rather by their inner character. See beyond the surface and be defined by our achievements, not the setbacks or disabilities.
Elizabeth Hoverman is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Findlay, Ohio. You can view more of her art at https://www.ehcreativephotography.com/Personal-Photography-