Thursday, August 28, 2014

Cold Shower, Warm Memories

While the ALS Ice Bucket Challenge was intended to drum up support for research to find a cure for amyotrophic lateral sclerosis (ALS for short, commonly known in the United States as Lou Gehrig's Disease), it has generated a host of mixed reactions.  Many have posted videos of themselves enthusiastically dumping large buckets of ice water over their heads and challenging others to do the same.  There has been a smattering who are sick of these videos clogging their Facebook and Instagram feeds. Others think charitable giving should be a private matter.  Some have even cited the disparity between donations to research organizations, which have spiked for ALSA since the challenge went viral, versus the number of deaths in the US from various ailments.  Pamela Anderson even went as far as to withhold her donation and instead challenge those conducting ALS research to halt animal testing.

I can see all sides of this scenario, although it baffles me why people would discourage any form of charitable activity or awareness building.  A few weeks ago I posted my own video, which I have since taken down because I didn't like how I looked and sounded.  My motivation to participate was not for recognition or trendfollowing but heartfelt.  

Just over six months ago, I lost someone very dear to me from ALS.  We first met at a training class for newly promoted Consultants and clicked instantly.  Yes, we were dipping quills in company ink, but our home offices were separated by the Atlantic Ocean and we were on assignments across the country from each other.  He was more than a colleague and occasional romantic interest, over time he became a good friend, confidante, and fellow funseeker.  

In September 2009 he was diagnosed, a month after the last time we were together in New York.  During the past four years I kept up with him on Facebook and Google Talk, sending pictures of travels and marathon medals.  When I knew I would be in Europe I would reach out to try to coordinate a visit, but between doctors vists, trips to Ayurvedic clinics in India, and bucket list vacations, we were not able to connect.  

The avid surfer, globetrekker, and guitar player I knew and loved became confined to a wheelchair, then lost the ability to speak, eat, and move.  Towards the end he would sleep with a ventilator and "type" with a special keyboard using his eyes.  He never lost his sense of humor.  Sometimes I wonder if he hesitated from seeing me because he wanted me to remember him before his diagnosis.  

Sadly, I did not get to see him before he left the earth.  His personality shone through at his funeral, where he asked close friends to "pimp his coffin" with photos of happier times. He had selected music as diverse as "Redemption Song", "Purple Rain", All Along the Watchtower", and "Lose Yourself to Dance".  I often found myself smiling through tears and thinking of that mischievous smile.  It blew my mind that he came to terms with his imminent mortality and was able to plan every detail of the memorial.  Now, when I hear a song that reminds me of him, or look at photos from one of our adventures, I laugh and feel a little wistful because I know his spirit is with me at that moment.

I wore a "patriotic" bikini top in my video in his honor.  Why did I do this, if not to give you lovers of the female figure something to ogle? When we first met, he asked me if American girls wear flag bikinis on spring break, to which I responded that I had never even seen one.  Sure enough, weeks later I texted him a photo of a mannequin in said bathing suit at a local boutique.   So I embarassed myself on Facebook to celebrate his thirty-eight-year life, keep the happy and playful memories alive, and tell a story of how ALS can impact not just the afflicted but also those around them.  

This is not meant to spur you to open your wallets or fill a bucket and ruin your clothes and your hair with it.  If anything, I hope you have learned a little bit more about this disease, gained a little more compassion for those who slowly and agonizingly slip away from their bodies as a result, and are inspired to reach out to your loved ones and make some happy memories of your own before it's too late.