Artist Illustrates Moments From Her Life, Primarily Thoughts On Living With A Rare And Degenerative Muscle Wasting Disorder
Los Angeles Artist Kam Redlawsk illustrates moments from her life, primarily thoughts on living with a rare and degenerative muscle wasting disorder known as GNE Myopathy. GNEM began taking over Kam’s body at the age of 20 but in hindsight, symptoms began much earlier.
Born an orphan in South Korea, she would learn 19 years later about her rare genetic condition known as an orphan disease. Kam went from kicking soccer balls and running to making use of canes, leg braces and now a full-time wheelchair since 2012. This condition keeps moving until it seizes every ounce of her body. She is one of millions that have an orphan disease, but one of three-to-seven thousand worldwide who have GNEM.
“This disease leads to complete quadriplegia. This disease began as foot drop at age 20 and since my body has gotten weaker over time, like a slow-motion blur. Today, I’ve been in a wheelchair for eight years. Last year I graduated from a manual chair to a powered chair. Eight years ago this disease began wasting my upper body including my core, neck, arms, shoulders, hands and my fingers. I am an artist. One day I will no longer be able to draw… among one thousand other things. This is a daily devastating reminder. Despite it, I live my life to the fullest, fully grasping the essence of what time means,” Kam told Bored Panda.
Kam trained in Automotive Industrial Design program at Detroit’s College for Creative Studies. Since, she has expanded her design repertoire to product design, creative branding and art direction, graphic design, non profit, advocacy and now illustration. She has designed an array of products ranging from cell phones, toys, electronics, and even contributed to the world’s cheapest prosthetic knee joint for third world countries.
Kam is a published KoreAm Journal columnist, public advocate and a multi-award winning designer and artist.
Kam is a self-taught illustrator. Out of the necessity to be understood, she began visually articulating her personal experiences with GNEM, portraying what it is like to live with a debilitating condition that doesn’t stop. Sometimes an image can describe what words cannot.
Through old journal excerpts, writing, video journal and design she attempts to give an honest portrayal of her every day struggles, triumphs and journey. From the funny, the good, the bad, the migration of her weakness, to being a designer, to a constantly forming perspective and a spirit that only grows despite her deteriorating body. Most of all she hopes those who have disabilities and struggles will see they can still live life and live it big.