story and illustration by KAM REDLAWSK
“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.
*Hereditary inclusion body myopathy, or a rare genetic disease that leads to muscle degeneration.
This article was published in the August/September 2015 issue of KoreAm. Subscribe today! To purchase a single issue copy of the August/September issue, click the “Buy Now” button below. (U.S. customers only. Expect delivery in 5-7 business days).