Meet Kam

Hi, my  name is Kam. Thanks for visiting Bike for Kam! Instead of a traditional bio I thought I would just post a couple of my old columns (below). I am an Industrial Designer, artist and writer. I wrote for Koream Journal for a couple years so the following excerpts is my work with them. If you have looked through our Bike for Kam website then you know what my disease is, how it progresses, where it can go and my involvement as a patient advocate. Please, visit often. I hope to see you frequently around internet space as we embark on our final Bike for Kam ride.  Thank you in advance for your donation to our little project and for spreading our cause around :).

Other ways you can get to know me:

Living Against Fear

story and illustration by Kam Redlawsk, September 5, 2013

"Parents always say things like, “You’re one in a million!” In fact, I literally am. My name is Kam, and a warm welcome to all of you to my very first column! I am your quintessential Korean American. OK, that was a lie. Not quite. I was adopted from Korea, and my parents are a white couple from Michigan. Already having three homemade white sons, they thought that a little girl could perhaps whip those boys into shape and decided to adopt me. I was the Korean import. I came to America at age 4, and this was really the beginning point of what my memory would locate as the start of my life.

I grew up in the white suburbs of Midwest Michigan, and it wasn’t until age 12 that I realized I wasn’t white like my family or those around me. I mostly saw myself as just Kam, but the combination of staring back at the mirror and teasing from schoolmates, who liked to point out my differences, soon made me see how different I really was.

But the reason I am one in a million, give or take, is that I have been graced with an extremely rare disease called Hereditary Inclusion Body Myopathy (HIBM), which statistically touches about one in a million worldwide. Though it is a genetic disease, I did not meet HIBM until my early 20s, during what’s supposed to be the most productive time of a person’s life. Prior, I was running, playing sports, active and healthy. HIBM is a progressive and debilitating muscle-wasting disorder, and although progression is slow, it typically leads to complete and total disability within 10-15 years.

So what do you do with news like this? Not to worry. I live anything but a disabled life. Having studied automotive and product design, I am an artist and illustrator, a traveler, a wanderer. I have skydived and swam in the Great Barrier Reef. This doesn’t mean I am not disabled because I very much am limited, and that will probably become more apparent as my column rolls on.

But I choose to live life against my fears and will try anything at least once. Because of my disease, I’m also an advocate, and some of you may recognize my name from previous stories KoreAm has done about my efforts to raise awareness about HIBM and money to fund the cure, which is actually within reach. As part of my advocacy work, I became an amateur blogger to share the story of my HIBM, but prior, I probably would not have considered myself a writer.

I tend to follow the lines of Twain’s “Write what you know.” And what you will find in my column is an array of stories about my life that will hopefully resonate with many of you—the things that sometimes hurt us, challenge us, frighten us, make us laugh, make us brave or weak and make us cry. Each of my columns will also feature one of my illustrations, which are another way I can share my experiences. The illustration running with this month’s column was drawn two years go. At the time, I could literally feel my steps slipping away from me, as I was fitted for my first wheelchair. I was saddened. This was a significant milestone—one that I had done my best to avoid, hoping I would make it to clinical trials and bypass the chair completely. If HIBM was like a tree, this is how it spreads, with a ball of yarn clinging to me, drawing me in closer and closer. But I titled the illustration, “It’ll Be Alright,” because this is what I tell myself as I push through the increasingly difficult stages of this condition."

It's Like Riding a Bike

story and illustration by Kam Redlawsk, march 12, 2014

"From birth we are meant to go through a series of milestones that exemplify growth, such as crawling, speaking, walking, running and riding a bike. I don’t really remember my first steps or first words; in fact, as someone adopted from Korea, there are very few glimmers of my life that I remember before coming to America in 1983. But one of my most memorable milestones as a child was the very first time I successfully rode a bike without training wheels.

I remember this particular day, the hue of the sky and the gentle push of the wind, as I did my best to ride a bike. I had been practicing all day in my driveway. Dusk was soon approaching, and my father had suggested we call it a day and perhaps try again another day, but I wanted to keep at it. I circled the driveway trying to stay on my bike for at least a few consecutive minutes. I kept falling and getting back up and falling again.

The falls frustrated me and yet only lent to my determination. The neighborhood was quiet—it was just me and my bike. I remember that bike vividly, with a banana seat and colored streamers hanging from the handlebars. I practiced and practiced until my body finally memorized the steps. It required balance, it required careful thought, pedaling, steering and aligning myself to the bike. And, then I did it. I began riding in consecutive circles without a single fall. Riding a bike soon became second nature.

Now, at age 34, however, these things I once knew and dearly loved have suddenly become confusing to me. I am now the confused child again, except no amount of practice will garner me a victorious lap around that driveway again. Riding a bike, along with a list of other things, is now beyond my capacity, but still fresh enough in my memory to cause me to miss it.

It is the loss of something that can trigger our true understanding and appreciation of its full beauty.

There are so many things we do throughout the day to which we never give a second thought. There are beyond miraculous things happening inside us every second of the day. The complexity of the body and its orchestrated mobility are amazing. It takes 26 muscles to smile, 62 muscles to frown, 34 muscles to move a finger and 200 muscles to take a single step. When I moved to California, I began collecting a group of adventurous guy friends who were very much into being active. They were always biking, out in nature and spontaneous types that thrived in unplanned situations. I was very drawn to this, drawn to those who truly appreciate their bodies, and it greatly influenced my perspective on how to live. Today, I’m much more adventurous and broad-thinking. I put myself into new situations, and even though I may be scared or unsure, I push myself into living life as much as possible.

Those friends and I began a grassroots project, Bike for Kam. Four years ago we began biking coasts to raise awareness and funds for my rare condition, HIBM, and this year we are at it again. We invite all who love to bike to join us this year from May 31-June 1, 2014. We have biked from San Francisco to Los Angeles in the past, and this year we will be biking from Los Angeles to San Diego for the second time. Please visit www.bikeforkam.com for more information, and consider riding with us!"

Jump

story and illustration by KAM REDLAWSK, August 2015

“Ultimately we know deeply that the other side of fear is freedom.” – Marilyn Ferguson

I was fine on the drive up and felt mostly OK as I filled out the paperwork and zipped up my skydiving jumpsuit. This was it; there was no turning back. As my husband and the tandem instructor lifted my nearly limp body from the wheelchair onto the plane, I felt a sudden surge of doubt. What am I doing?

The aircraft took off. It felt like the longest plane ride ever as we cruised to a 15,000-foot altitude above beautiful Sonoma County. The cabin was silent. I sat there petrified. I talked to myself, told myself everything would be OK, willed myself to stop thinking about the incredible knot twisting around in my insides. I began to silently cry, not out of fear of jumping out of a plane, but in reflection—over what was happening in my life and what was yet to come.

If I can handle HIBM,* then I can handle jumping out of a plane, I thought. I can deal with my colossal fear of heights.

From a young age, I recognized there were two kinds of people: those who had no fears or at least lived in spite of them, and those who lived fearfully, who never tried anything and lived by a set of rules that kept them safe and comfortable. When I was young, I abided by such a set of rules, but deep down, I couldn’t wait until I was old enough so I could break every single one of them—starting with traveling the world. I could sense the regret others felt for not pushing themselves to live, a decision that resulted in a stunted spirit. THAT was my absolute biggest fear—of succumbing to fear.

Then 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.

When I went skydiving for the first time in 2011, my wheelchair had become a regular part of my life. I was using one during long-distance excursions and road trips, or even for getting around in shopping malls and art galleries. I had always been an avid traveler, but the reality of losing more and more muscle mass made my future a little murkier. As I sat there on the plane, about to jump out into the expanse below, 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 chronic condition. In a way, my condition has been a blessing, by forcing me to become more adventurous. In the last 12 years, I have traveled to Japan, Korea, Thailand, England, Australia and France, and have taken road trips around much of California and adjoining states. I have gone skydiving, paragliding and dived in the Great Barrier Reef. And I’m not done.

I can’t change the cards I have been dealt, but I can choose how I want to play them. Fear steals from us and is all-consuming. So I choose to seek out freedom in the areas I can control: by having an open mind, accepting those who are different, having a sense of humor and, my favorite, keeping up my curiosity. And for that, I am extremely grateful."

Bike for Kam is a grassroots project ran by Kam and her friends. This way 100% of donations raised can go directly to HIBM medical research. No donations are used for the website, video or material development - Kam and her friend Steve do all of it pro-bono.

Bike for Kam and ARM sincerely thank all who offer their skills and to all those who ride with us out-of-pocket. You make this possible.