I Lost My Dad To ALS And The Ice Bucket Challenge Proves There Is Still Good In The World

by Daphne Ewing-Chow
Daddy loves you.

Those were the very last words my father ever said to me.

He was in the final stages of ALS and had been fighting the disease with all that he had left. After a year of suffering, -- battling against the atrophy of his muscles and the degeneration of his respiratory system -- he collapsed at the gym. His lungs could no longer support his valiant struggle against this cowardly Goliath.

Ultimately, the giant won.

A few days ago, I was reconnected with the enemy. This time, however, it emerged in the form of a retaliatory gimmick: a light-hearted cultural fad that promised to somehow help people who are suffering the way my father did, the way I suffered when I lost my father at 14 years old, the way my mother suffered as a widow in her forties.

I watched it on social media: the buff body of one of my Facebook friends being doused with a bucket of ice, while he grimaced and ultimately challenged three more of his friends to do the same.

I was one of the first to comment: “How does this ALS challenge work? Are you going to donate money to charity or does this simply raise awareness for the disease?” My comment was followed with at least another 20 or 30 others, none of which directly responded to what I had asked, or referenced ALS at all.

It was a joke to me -- a bit of fun -- and at the time, I simply did not understand.

In the days that have transpired, I have had the pleasure of watching many more light-hearted attempts at raising awareness. Let's face it: Some of them are purely narcissistically-driven videos, executed by those looking for a quick 15-seconds of fame for showcasing the results of their gym membership fees.

Narcissism aside, the ALS Ice Bucket Challenge has been resoundingly successful in raising awareness for a horrific disease and attracting much-needed funding. The ALS Association has been able to raise nearly $16 million in just under three weeks, as compared to the $19 million that it raised over the course of an entire year in 2012.

ALS awareness has finally hit the mainstream, thanks to a viral fundraising exercise that was originally intended as a small-scale charity drive, having nothing to do with ALS at all.

So, does it matter that the majority of those responsible for raising ALS consciousness have no clue what the acronym stands for, what the disease is or how it devastates families?

Most participates of the Challenge likely have not donated financially to the cause; they are not aware that Amyotrophic Lateral Sclerosis, aka Lou Gherig’s Disease, results in the progressive degeneration of the motor neurons, resulting in reduced ability to initiate and control muscle movement.

My father would drop to the floor while engaged in mundane tasks like walking. He would hallucinate because the muscular activity responsible for respiration was so poor that he was not getting enough oxygen to his brain. My big strong daddy lost 50 pounds, his vibrancy and his muscle tone.

And in one short year post-diagnosis, I lost my dad.

The images of these buff, nubile bodies dousing themselves with ice emerge in sharp contrast to the frailty of my father who, in his final days, would not have been able to respond effectively to the shock of such cold temperature.

I admit it: At first I was offended by the shallowness and perceived mockery of my pain and the pain of ALS patients and their families.

Most campaigns have education as their cornerstone, but this movement uses an even more powerful psychological tactic: the ego. It sidesteps empathy in favor of narcissism, infuses an element of fun to the cause and detracts from the natural human inclination to avoid depressing subjects.

It results in positive spillover, providing a wider platform for people like me, the loved ones of ALS victims, and the ALS Association to make it their business to educate those who are willing to listen and those who would have otherwise been ignorantly unaware.

The social media challenge is a modern response to parties, concerts, sales and other traditional methods of using pleasure and fun to raise funds for otherwise depressing issues. Online campaigns are the new virtual exercises for raising awareness and much needed funds for education and continued research.

Ironically, the Ice Bucket Challenge, at least for now, is the hottest thing on social media, and despite the shallowness of that bucket, I plan on riding the wave. I will buy my own bag of ice, direct my own video and counter the cold with a warm donation to the ALS Association.

I am certain my father would approve.