Giving a Voice to Those Silenced by the Disease
This past summer, I volunteered to help the company that I work for at the Los Angeles Walk to Defeat ALS in Exposition Park. We signed up with “Team Nanci”, joining forces with the incredible Hollywood Publicist Nanci Ryder who is battling ALS in the most elegant and impactful way that I’ve ever seen.
I was stationed at the Boogie Board booth, not to be mistaken with the popular beach accessory — Boogie Board is an e-writer, a pen and paper replacement via a featherweight LCD screen and easy to handle stylus (check out www.myboogieboard.com). My job was to help sell the special “Walk to Defeat ALS” edition Boogie Boards (100% of proceeds from the booth were donated to The ALS Association); to say that I had no idea what was in store is an understatement. I knew that I would be meeting volunteers, doctors, family members, and, of course, patients with varying stages of ALS, but I never could have prepared for the emotional impact that meeting these individuals would have on me.
There were people in wheelchairs with advanced stages of the disease, but there were also recently diagnosed people, proudly marching in the walk before their limbs rejected their will. I met a father who you’d almost never know had ALS — the only giveaway that one arm was swinging by his side with a little less control than the other and his hand and fingers lax; he bought a Boogie Board for his 11 year old daughter, and I turned away to hide my tears as I knew the reality is soon he would need it more than she would.
Boogie Board is a remarkable product because it transcends the typical consumer categories. I have long been aware of the product as a child and teen device. The modern day etch a sketch is what it previously represented to me; something so simple yet captivating for hours at a time. Now, here is where my perception was flipped upside down; Nanci Ryder has been using Boogie Board as a pen and paper alternative — for her and many others, it is a new voice, a method to express themselves with colleagues, friends and loved ones. Boogie Board is a means of empowerment for people whose disease is taking everything from them.
Throughout the day at the booth, we sold Boogie Boards to children and families, executives and professionals in diverse fields, college students — who explained they use them for writing notes to their roommates, and to the brave ALS patients whose voices MUST be heard and for whom we all gather to raise money to find a cure. In many conversations that day, terms such as “game-changer”, “miracle device”, and “life-saver” were uttered with a bittersweet sense of hope.
I have been aware of ALS to the extent of knowing about the hugely successful Ice Bucket Challenge, and seeing one beloved high school teacher’s journey with his family as his father fell victim to the disease, but it has always been a distant awareness. The reality was always just out of my grasp. How often do I take my voice for granted? Singing terribly off-pitch in my car on my daily commute, calling my sister long distance in London, giggling and gossiping with my best friends every week for as long as I can recall… I am a passionate hiker, nature enthusiast, and horseback riding daredevil. I can’t fathom a world where my body prevented me from living the life that I love. I pondered these thoughts all day and left the event with newfound humility.
I am sharing my story as both a slice of life and as a call to action. I have a new connection to a cause I knew so little about and am determined to continue and expand my involvement. I think that each and every person reading this should find their ALS Association chapter and sign up for the next walk. They happen often and your presence can make a real impact toward finding a cure.
Originally published at medium.com