Kam Redlawsk, 38, has GNE myopathy, a rare, progressive muscle disorder. Formerly known as hereditary inclusion body myopathy (HIBM), this condition until the last stage, leaving people with the condition using wheelchairs for mobility. Some may experience total paralysis.
Much of this condition still remains a mystery, but we do know it has a genetic cause — a fact that’s been on Redlawsk’s mind and that threads throughout the fine lines of her illustrations.
You see, Redlawsk grew up with a traditional American upbringing, but she never knew her biological parents — the two people who passed down the genes that caused her disabling muscle condition.
Searching for the giver of the gift
“I’m adopted. My condition is genetic. I know nothing about my biological parents; the bodies who passed this condition to me,” Redlawsk wrote in 2012 about the illustration, “The Gift.”
“They are/were carriers but did not physically express HIBM symptoms, which means they are perfectly healthy and free of the remains that HIBM leaves behind. This physical expression was passed onto me and I am their HIBM product,” she wrote.
Her searches for her birth family still come up empty, but in 2015, Redlawsk connected with a few blood relatives (fourth cousins) through 23andMe, a DNA genetic and testing analysis service. Redlawsk stresses that she’s never struggled for a sense of belonging growing up, although the yearning for answers remains ever present.
And it’s these emotions, from loneliness to ambition, that you’ll find intricately threaded throughout her illustrations.
Facing the attention that comes with the condition
“What’s Everyone Staring At?” is an art piece about being different. As a Korean girl growing up in a Midwestern town, Redlawsk reminisces on how she “never wanted to stand out, preferring instead to blend in with the crowd.” Developing GNE myopathy was an ironic card for life to play. But looking back, it seems like life had plans for Redlawsk to stand out.
“My husband often likes to point out that my entire life story — from my adoptee background, to my career path of car design major to toy designer to later an illustrator, writer and patient advocate with a rare, one-in-a-million disease (not to mention my red hair) — and who I am are anything but ‘normal,’” she writes in her post for “What’s Everyone Staring At?”
Still, as an advocate who’s often in the spotlight, Redlawsk has feelings about being called an “inspiration.”
Coined by Stella Young, “inspiration porn” is when people with disabilities are objectified or set to a lower standard. This constant feeling of being praised and showered with compliments for doing something an able-bodied person does regularly can become exhausting.
Redlawsk’s drawing “I Don’t Want to Be an Inspiration”reminds us of that fine line. “I often hear ‘You’re an inspiration.’ I get it. I say this to others too. But the truth is I don’t want to be an inspiration,” Redlawsk writes. “Sometimes this comment makes me feel like a fraud. Like I’m on a pedestal under false pretenses because I don’t want to be an inspiration. The ‘inspiration’ just wants to be normal, preferably unknown.”
Redlawsk’s art reminds us that people with conditions don’t exist as a reminder for otherwise healthy people.
Capturing the essence of being human
There’s no lowering your risk of dying. Mortality is inevitable — and as we age, our bodies will fall apart and often fail us. This is where it really matters, though. No matter what people look like, their essence remains. And your essence is held within the brain and the heart, not the body.
And that’s the powerful theme behind Redlawsk’s art. Through her personal experience, she captures the essence of being human. She can draw a monster on her ankle and refer to her leg braces, but it’s the movement toward light, the kicking off of a struggle that trips us up, that we can all connect to.
It’s one of her most powerful, relatable illustrations, “Oneiros and I,” that conveys this relationship perfectly. In her illustration, Oneiros represents her GNE myopathy monster, a part of her that’s unwanted but follows nonetheless.
“Our ‘illnesses,’ disabilities or struggles manifest in different forms; physical, mental, arrogance, selfishness, memories that control us making us puppets of the past. The list goes on,” Redlawsk writes as she recalls a reader who identified with this portrait.
We all have an Oneiros in our forest. It’s not an object we can avoid, but a thing full of feelings that can dictate our life if we choose to let it — even if we choose to ignore it.
Living life to the fullest: travel, love, create, yearn, believe
These days, Redlawsk continues to give an honest portrayal of her day to day. She travels. Japan, France, Thailand, England, and more countries are on her been-to list, and she has excellent advice for anyone who wants to know about visiting California’s Death Valley.
She loves, with her husband by her side, who helps her when he can and when she needs it. She creates. Beyond illustration, Redlawsk used her skills to put marketing materials together for the group Advancement of Research for Myopathies. These days, she’s independently advocating for GNE myopathy.
She yearns. Due to her condition, Redlawsk and her husband decided not to have children. Redlawsk created a wishful portrait as a result.
Most of all, she believes. Even when the news is bad, like a setback in clinical trials, she believes in constantly going, even in the face of a new adversity. Losing upper extremity capacity is the next major milestone for Redlawsk. This could mean no more illustrations, but she still believes in staying focused.
“The point is every effort from those involved is another step to perhaps another door. Perhaps in the not so distant future, despite my own potential increased frailty, we will have prevented a newly diagnosed patient from getting worse and that has to mean something,” writes Redlawsk.
“I’m not saying I’ve given up but I’m aware of the reality that maybe I won’t make it this time around or maybe I will... I guess we won’t know unless we keep trying. That’s all we can do.”
Christal Yuen is an editor at Healthline. When she’s not editing or writing, she’s spending time with her cat-dog, going to concerts, and living in the comments of internet threads. You can reach her via Twitter or Instagram.