It’s been a long week of depressing news. Every day it seemed like another breaking news story touched me personally in one way or another. And yet, in between the images of riots in St. Louis, the staggering numbers about suicide & depression, and the horrible violence overseas, something else that has a special place inside my heart caught wind and spread like wildfire through social and televised media – the outpouring of support for the ALS Ice Bucket challenge. It didn’t matter if you knew someone with the disease or not – everyone from football teams, corporation owners, movies stars, politicians, and of course, everyday people took a break from life as we know it and filled a bucket of ice to raise awareness for ALS (Amyotrophic lateral sclerosis)
My familiarity to the disease, commonly known as Lou Gerhig’s disease, comes from first-hand experience of seeing its devastating effects on not only the body’s entire muscular system, but the painful and harrowing effects it has on that person family and friends. My ex’s father had just been diagnosed when we first started dating, and over the course of three years (2 of which we lived with his parents), I witnessed a man robbed of his ability to walk, speak, eat, and move due to this fatal disease. While his mind remained as keen as ever (he was a doctor who practiced as a family physician for over 30 years), his body grew weaker with every passing day. His family spent every waking moment adjusting and readjusting to life with a terminally ill Dad. From a walker, to a wheel chair, then finally to a power chair, the disease moved quickly through his legs, arms, and then into his respiratory system; slowing his breathing, and slurring his speech. Many nights were spent moving his worsening body from place to place, and falls were rather common. Sadder still, he had been a man of sport and adventure, never missing an opportunity to fix things around the house or take his wife and family out on memorable vacations where physical activity was guaranteed. He was a terrific neighbor, coach, friend, and member of the community. Every time my ex would talk about his dad’s diagnosis, people would always shake their heads — thinking of Lou Gerhigs as a disease for older people, realizing that it could have been their husbands who could have just as easily become a victim.
Living so closely with someone with ALS changed me forever – and when the time finally came late last year for his exuberant life to end, I tried my best to hold a broken family together at the end of a battle with a disease that currently has no cure and few avenues for research. ALS has no clear causes, no reliable treatments, and few clinical trials. Every year its awareness spreads, but until the Ice Bucket challenge no real push for a cure has ever been attained. I sat everyday this week encouraged by the many people who pledged money to the ALS Foundation and poured buckets of ice (to represent the same feeling ALS patients experience of body numbness)on themselves as a way to show their support.
Which is why I have challenged everyone I know to participate in the Ice Bucket Challenge. I thought of just challenging a few people, but when you have something as important as ALS to fight for you have to think bigger. In a time when so much divides us, this cause has reminded us all just how connected we are, and of the power we each have over influencing others when it comes to things that are important. Personally, it reminds me of the kindness and dedicated attitude to help people that Ron – the father I grew to know so well, had always had. His body may have been physically limited, but never his heart.