PERSONAL STORY OF MUSCLE GSD
“MCARDLE’S IN EVERYDAY LIFE” PHOTO SERIES
My series of photographs tries to convey what this condition feels like. It shows a visualization of the “invisible” extra weight I carry due to my genetic muscle disease. The "M" is for McArdle disease and the suitcases are concrete and represent the baggage that affects me mentally and physically during normal activities.
Art is a reflection of life and I want to represent and explore the “unseen” and bring life to the small and intangible building blocks that make up my own body – through my paintings, drawings, collage and multi-media work.
A long delay in diagnosis
In 2012, I was diagnosed with a very rare condition called McArdle disease. It is genetic and it affects my skeletal muscles and causes premature fatigue and pain. It is incurable. It took dozens of doctors thirty-three years and hundreds of tests, exams and painful surgeries to diagnose what was wrong with my body. The statistics say that only ten people in a million have McArdle’s. Out of those ten people, perhaps only half have been diagnosed, so many people living with McArdle's do not even know that they have a rare disease that could even put their life at risk.
My genetic defect in my DNA means my body cannot turn glycogen stored in my muscles into energy. Just think of all normal people as cell phones that can recharge to 100%, but I can only charge to about 15%. If I push myself too hard physically, I can cause damage to my muscles that will release toxins into my bloodstream. If the toxin level gets too high and my kidneys are not able to filter out the damage fast enough… I could go into renal failure, which is life-threatening. With the right diet, a structured exercise plan and careful monitoring from my doctor, I will live a long and relatively normal life. This diagnosis is still hard to face on a daily basis, but using my own artwork as an outlet helps me to deal with this reality and cope with the obstacles I encounter every day.
Born into a creative family
I was born into a creative family in St. Louis, so I and had no choice but to be an artist! My mother is a fashion designer and merchandiser and gave her talent to me. My brother is a professional illustrator and professor at Washington University in St. Louis.
Click to enlarge and scroll through my photo series.
Growing up, I was told over and over again that I was lazy, that I wasn’t trying hard enough, and that “it was all in my head.” I have had fatigue and problems with tiredness since I was three years old. I felt like I was all alone and no one believed that there was anything wrong with me. I am blessed to have had supportive parents and family. I also have had positive bi-products of living with this disease like: persistence; a desire to work ten times harder than everyone else; to be the best; to stand out from the crowd… and to believe that I am unique and special for a reason. It is really complicated and difficult live with a disability that no one recognizes and when people look at me- there is no evidence that I even have a disease.
Inspired by my art teacher
I was inspired by my high school art teacher to master all forms of art media. I am a musician and can play a dozen different instruments. My nickname in high school was 'Wonder Woman'. I decided to take my fine arts skills to the University of Kansas, where I graduated in 2002 with a Bachelors in Art Education.
I married Tim Goodwin an old friend from college, he was in the Navy and was stationed in Oahu, Hawaii, where I worked as a floral designer and a videographer in a dolphin tank at Sea Life Park. We moved to the nation’s capital for Tim's assignment at the Pentagon, working for a Two-Star Admiral who was Chief of Navy Chaplains. We moved back to Springfield, Missouri, where Tim is now a civilian working as a electrician at Cox Health, and I am teaching art at Republic High School and am the Fine Arts Department Head.
Using my artwork to convey something about McArdle’s
After 17 years of teaching, I received my Masters of Art Studio & Theory at Drury University in 2015 and am pursuing a second Masters Degree in Art Education. My professors at Drury challenged me to use my own artwork to convey something really personal that is unique to me. My artwork began to focus on the molecular structure of my own skeletal muscle and is now a vehicle for me to explore my disease, do research and educate others about rare conditions like McArdle’s. My molecular drawings, paintings and multimedia pieces are all based on skeletal muscles . I always share about my condition with my students the first week of school and share my website and my personal artwork, so they feel more comfortable sharing their personal stories and experience with me in the future.
I am passionate about exploring the genetic structure of my own cells and DNA and the damage that can be caused due to the defect in my skeletal muscles. I try to explain the emotional roller coaster I have been forced to ride my entire life. I use my artwork as a vehicle to explore my own emotional journey and to simultaneously educate others and bring awareness to this disease. I choose to turn this disease into something beautiful and positive and explore the unknown.
The concept of the series of photos
I had an idea to create a series of photographs to convey what this condition feels like. “McArdle Disease in Everyday Life,” shows a visualization of the "invisible" extra weight I carry due to my genetic muscle disease. The "M" is for McArdle disease and the suitcases are concrete and represent the baggage that affects me mentally and physically during normal activities. They are all tied to me with a red ribbon and are in black and white to add drama and contrast to those living a normal life without a genetic muscle condition. I hope this series of photos will show the struggle, but also celebrate how life still moves forward.
I plan on doing a second photography series to pair with this one. That will show a green “M” with me in everyday life finding things that help me cope with McArdle’s. I think it is so important to show the struggle and also show the solutions we use to manage the pain.