By Corina Knoll
Los Angeles Times
WWR Article Summary (tl;dr) What do you do when you are facing a debilitating illness? For one inspiring woman in California the answer is TRAVEL, LOVE and CREATE.
Los Angeles Times
The night is always broken by pain.
She wakes desperate to shake the frozen ache wrapped around her limbs.
Too weak to roll over, turn, shift, she nudges her husband, who wearily pushes her into a new position.
The performance plays out up to a dozen times before sunlight slides through the shutters.
Kam Redlawsk is 38.
She dyes her hair brilliant colors, dotes on her dog Pippi, throws dinner parties and dreams up designs for product and toy companies.
She also has a rare genetic disorder that progressively weakens muscles as it inches throughout her body.
It is not fatal, but it deals in devastation. Although there is no loss of sensation, most patients eventually experience something similar to quadriplegia.
It first revealed itself in high school, when a sleepiness fluttered in her feet. Redlawsk blamed it on too much soccer. She was a midfielder, lithe and swift with a ball.
But then she started to trip on stairs.
Doctors’ theories proved false. Some friends and family members thought it was all in her head.
A few years later, Redlawsk had grown used to scanning her path for rough surfaces. Sidewalk cracks, curbs, small inclines, even grass, became obstacles.
By then she was studying design at the College for Creative Studies in Detroit and taking calculated routes across campus.
The correct diagnosis, when it arrived, was unfathomable: GNE myopathy, also called hereditary inclusion body myopathy, or HIBM. Incredibly rare, it affects about 7,000 people around the globe.
Redlawsk has found there is no lasting way to navigate this steady procession to paralysis.
“I always think, ‘OK, this stage I can handle, I can do this.’ And then it gets worse.”
So, what does one do when darkness has been folded into your past and now haunts your future?
___
You travel
Redlawsk would never know who handed down those fateful genes. She had been hours old when left at a maternity clinic in Daegu, South Korea. Born with a cleft palate, she battled measles, chicken pox and a deadly virus all within the first months of her life.
At 4, she was adopted by a couple from Chesterfield Township, Mich. She spent her summers riding bikes and playing baseball with her three older brothers. The description on her adoption papers proved true. She was introverted but social. Daring. Independent.
Two decades later and a doctor was pointing her down a path of complete debilitation.
“Quit school,” he advised. “You won’t be able to move around much longer. Buy a wheelchair.” He said it was unlikely Redlawsk would meet anyone with the same ailment.
The words felt like a sentence of solitude. Which lit a fire.
“I was like, ‘Screw you,'” Redlawsk recalled. She vowed to get her degree. She picked out a cane and ankle braces to steady her gait. And she did something she had put off for years. She bought a ticket to her birth country. That day.
Seoul, she would learn, burned bright and bustled. Redlawsk shopped the teeming streets of Myeongdong, slurped bowls of broth swimming with rice cakes and dumplings, and hiked a mountain to marvel at the Wonju countryside.
Of course, a young woman with a cane received stares, curious and impolite. Casual strolls wound up painstaking journeys. And Redlawsk relied heavily on friends from the area.
Still, when she returned, she felt uncaged. There were other places to go.
She would see Korea again, and take trips to Japan, France, Thailand, England, Mexico, Australia.
More manageable adventures have come via road trips, some planned, others on a whim. Friends who organized her fundraiser Bike for Kam have toted her down the coast in a carriagelike rig. Strangers offer to help her over rugged terrain or snap her photo.
Redlawsk likes it best when she feels adrift, when nature rises around her in a never-ending mural.
If you can, she suggests, take in a Death Valley sunset that paints a dozen hues on the sky. Let the rays bake against your back, then wait for the coal-colored canvas that arrives, glittered with stars.
Try a straight shot across Utah where ragged rock formations rise throughout the copper desert. See Mono Lake in the winter, when the sun glints against the snow. Head to Big Sur, Alabama Hills, Joshua Tree.
Just go. See. Move.
___
You love
She met Jason Hazelroth in college. He too was adopted from Korea, and they had grown up in towns 20 miles apart.
“Let’s hang out,” he said one day after class. He liked how Redlawsk seemed bold but introspective. They sauntered about Detroit’s Greektown. He offered his arm when she grew weary.
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He didn’t ask about her careful steps.
The two reconnected in Los Angeles, where Redlawsk landed a design job at Mattel. She crashed at Hazelroth’s place. And never left.
At their fall wedding, she pinned white flowers in her hair and clung to her father as she cautiously moved down the aisle.
Hazelroth learned the best way to assist his wife into the shower, up a flight of stairs, off of the ground.
By the time Redlawsk was 30, her slim frame was leaning heavily on her cane while her hips wobbled.
“Just fell,” she texted Hazelroth one day. “Some landscape guy helped me up. Pretty much didn’t avoid the boobs. :)”
“Sorry u fell. Did it feel inappropriate?”
“Who cares. I’m up! :)”.
When the two were out together, they were sometimes perceived as unequal partners. Redlawsk got looks of sympathy, while Hazelroth was sent admiring glances.
“Wouldn’t you love to just be able to run across the street with me?” Redlawsk asked her husband one spring evening as they dined at a cafe. “Not have to worry about where to park?”
Hazelroth was quiet. “I guess,” he finally said. He never liked such queries.
When they left the restaurant, Redlawsk struggled on the walk to the car, awkwardly thrusting one leg in front of the other.
Finally, Hazelroth leaned over, gathered his wife in his arms and carried her down the street.
___
You create
Arms, hands, fingers. Throughout childhood, they were nimble and spirited, capable of sketching the images tumbling about in her head.
In college, they were deft with a computer, adding delicate touches to would-be cars and products for rigorous design courses.
At Mattel, they dreamed up Speed Racer toys and helped shape Mindflex, an innovative brainwave activity game showered with industry praise.
As her lower body became increasingly stubborn, Redlawsk was grateful to be an artist, able to shape, draw, form, write, invent.
At home, she whipped up Korean feasts of galbi, japchae and pajeon, maneuvering with a steady grip on the countertop. She wrote tales about her adventures with a bizarre disorder on her blog and for a column in a Korean-American magazine. She drew accompanying illustrations that were fanciful but stark.
Redlawsk also found herself in charge of crafting the marketing materials for ARM, a nonprofit dedicated to researching GNE myopathy.
In touch with fellow patients around the world, she saw various stages of the disorder. Some friends urged her to continue walking for as long as possible. Carefully pushing muscles to perform was a small way of staving off deterioration, although the disorder eventually wins.
She held out until 33, when the shooting pain in her hips would not be ignored.
A wheelchair, she learned, was not so bad. It was nice to no longer worry about falling. And a relief to find that a life led with arms could be full.
But she heard a countdown begin.
“It’s kind of like the last end,” Redlawsk said. “If you’re looking at it like a timeline, it’s legs, wheelchair and then quadriplegic.”
Over the years, she has savored spare moments when her fingers tell her story through autobiographical illustrations.
In one, a girl’s arms have hardened into branches. Her legs are vines rooted in the earth.
In another, a motionless woman lies in a pair of cupped hands disintegrating in the wind. “Please don’t leave me,” it reads.
___
You yearn
Redlawsk once drew a picture of a long-haired woman, her eyes closed while delicately blowing bubbles. Inside each sphere were babies that would never be.
She and Hazelroth have decided not to have children. Pregnancy would be hard on her body. Surrogacy’s expense is out of the question. They haven’t entirely ruled out adoption, but worry about raising a child without family nearby. Hazelroth, a concept artist at a video game company, is already fatigued from work and caring for his wife.
“I never thought of the typical fairy tale thing,” Redlawsk said on a recent afternoon at the Long Beach condo where she and Hazelroth have now settled.
“But I always envisioned myself having kids. I had, like, this weird love for my unborn daughter.”
As adoptees, the couple had dreamed of seeing a piece of themselves reflected in their children.
A friend encouraged Redlawsk to have a baby, to do what she truly wanted. The suggestion still makes her weep.
“Just because you decide not to do something doesn’t mean you don’t want it,” she said, her voice brittle. “It’s another thing that you can’t do that you want to do. But you get used to that. One day I can never draw anymore. It’s just the way it is.”
That morning, Redlawsk had gone to physical therapy where she spent time in a swimming pool, the one place where she can walk if she clings to Hazelroth. She also did exercises to help maintain the strength in her hands.
The soreness rippling throughout her upper body has been impossible to ignore.
___
You believe
Years ago, Redlawsk became close with two brothers stricken with GNE myopathy who isolated the gene responsible for their disease.
Daniel and Babak Darvish, both doctors, are the founders of ARM. They are well-known within the Middle Eastern Jewish community, which has reported a higher frequency of the disorder.
The brothers licensed out an oral treatment to Ultragenyx, which led to the biopharmaceutical company testing a drug that could slow the rate of muscle atrophy.
The Darvishes say they are also developing gene therapy that has the potential to halt the disease’s progression altogether.
But the two have been unable to raise the $5 million needed to start clinical trials.
For Redlawsk, who considers the Darvishes her family and stays informed about their work, it can be a strange existence to know that the possibility of an antidote lives around the corner from the threat of total paralysis.
So she has tried to turn to what is concrete, what she is sure of right now.
She knows that the disorder guided her to her birth country, to California, into the arms of her husband. It gave vision to her art, gratitude for her mind, ignited her need for adventure. It deepened friendships and enriched experiences. It made her more reflective, more compassionate, more sure of what lies within.
All of which doesn’t balance out the terribleness of what continues to happen.
But it has forced Redlawsk to see how perspective can help make a bit of sense out of an unexpected life.
Like when she’s ordered up another journey and is being driven along the wild curves of the California coast, where the sea is vast and grand and bright.
It’s a moment when the majesty and enormity of the world overwhelms and she’s allowed to be lost in all that glory.
And a woman whose limbs don’t move is suddenly diminished into a mere, laughable dot, so tiny and trivial and inconsequential. In the best of ways.
