This week, I watched in awe and admiration as CEOs, celebrities and friends in my news feed raised awareness and funds for ALS or Lou Gehrig’s disease. It is a terrible and horrifically underfunded disease but this week’s “bucket challenge” changed all that. In two weeks, more than $53 million dollars has been raised for ALS research with everyone from George W. Bush to Bill Gates to Ben Affleck supporting the challenge. It was a pure representation of the power of social media and charity that has been heartening to observe.
But even though I have been personally affected by ALS, I won’t be doing the ALS Bucket Challenge.
Ten years ago, my mother in law died of ALS. We watched for years as her muscles atrophied and she went from an avid hiker and bicyclist to a bed ridden shell of her former self. Once a brilliant and vivacious entertainer, she became incapable of speech. An independent free spirit and world traveler had to be placed in a facility that could provide her with around the clock support. We turned away as feeding tubes and breathing apparatuses were inserted in her inert body. The horror in her eyes showed that she was very much still aware of her body’s betrayal. She died shortly after being placed in the care facility but I believe that her spirit had died years before.
ALS is a cruel disease that robbed us of our beloved mother far too soon. She died before the birth of her beautiful grandsons and was denied the opportunity to nurture them into amazing men. Her once strong body became a cage for her brilliant mind. I hope that all of the dedicated professionals and worthy organizations that support ALS research find a cure for this asshole of a disease.
So I observed with mixed emotions as the ALS Bucket Challenge went viral, happy to see this disease receive the recognition and funding required to find a cure. But watching celebrities call out their big cool friends to dump ice water over their heads on Facebook would never bring my mother in law back. Their temporary discomfort was in no way comparable to the suffering and indignity she endured. I knew that I would be incapable of dishonouring her memory by participating in the challenge myself.
I’m not complaining about my news feed being clogged with yet another friend in her bikini dumping ice water over her head because this campaign has evolved so beautifully and successfully. I’m grateful for everyone who donated to ALS Canada and the ALS Association and helped raise awareness of ALS worldwide. But my family doesn’t need to dump a bucket of ice water over our heads to remember and honour the woman we loved. So please don’t ask.
Your post inspires me to read more and understand more about the ASL disease than any celebrity dumping a bucket of ice over their head.
Your family, and families like yours, are the reason so many people do it! xoxo
So sorry for the loss of your mom.