Rare Disease: GNE Myopathy (HIBM)
At age 20 I set out to complete a Bachelors of Fine Arts majoring in Industrial design. At the same time I began experiencing mysterious physical symptoms, symptoms that would lead me to an unimaginable future. I went from kicking soccer balls, running and leading an active life to making use of leg braces, canes and today a full-time wheelchair. After a tumultuous 5 years of searching for a name for this uninvited stumbling block, I would learn I had an extremely rare genetic muscle deterioration condition called GNE Myopathy (aka HIBM) which could take my once active body to quadriplegic state.
I Document the Milestones of My Disability In Drawings
This rare condition affects one to three thousand people worldwide. My condition is known to the medical world as an “orphan disease” which is ironic since I was born an orphan in South Korea. All my doctors told me there was no hope. I was too rare to ever meet another patient like myself and I should quit college and lead a less ambitious life. According to their medical textbooks my future looked bleak. After completing my Bachelors I flew to California and found a design job. I also found a non-profit for my rare condition helping to propel advocacy and research science for GNEM. I was no longer alone and the medical world was wrong. My world had opened up and I began advocacy to help spread awareness about my condition. I offered my design services and fundraised but I soon realized it’s hard for people to empathize with medical textbook definitions so I began blogging about my personal experiences with GNE Myopathy.
I soon realized some people respond to stories visually so I taught myself illustration and began drawing out my experiences to raise awareness. I hoped my simple drawings would not only educate the viewer about GNEM but also the viewer would see themselves in my drawings and relate it to their own struggles. “Ultimately we know deeply that the other side of fear is freedom.” – Marilyn Ferguson
HIBM changed my whole world
HIBM came along when I was 20 and changed my whole world. Life felt both surreal and confusing. I was never one to fear death (except a painful one), but I never imagined becoming disabled—that was something that could happen to others but never to me, I thought.
18 years later I am wheelchair bound but live life even larger than when I was able bodied. I’m constantly traveling and participating in daredevil stunts like skydiving, parasailing and scuba diving. I have a deep unquenchable thirst for life and hold a philosophy of trying anything at least once. I realized I could give up on the rest of my dreams by succumbing to fear, or face the challenge head on. I chose the latter. Life feels short and nothing has made me more aware of that than my severely debilitating disability and chronic condition.
Sharing My Drawings
I tend to follow the lines of Twain’s “Write what you know.” I also draw what I know in an array of stories about my life that will hopefully resonate with many — the things that sometimes hurt us, challenge us, frighten us, make us laugh, make us brave or weak and make us cry. My upper body has begun weakening and one day could be immobile, unable to draw but for now I'm incredibly grateful I can somewhat share the inner space of my mind with others and visually document this journey.
You live, you draw
Through this process I realized you don't need a rare disease to understand my depicted emotions, and most can relate to loss. So many of us grieve in our corners in silence aching to be understood and I hope my drawings can put an explanation to the unexplainable and shed light on those who feel alone.
What do you do when you find out your future will be different than you thought? You live, you draw. You do all the things you've ever wanted to do because through the struggle you understand what time really means.