Begun by Peter Frates, a Boston College baseball player, afflicted with Lou Gehrig's disease since 2012, the ALS Ice Bucket Challenge has grown to become the center of a virtual social movement. Icing videos regularly go viral. Naysayers aside, to the great relief of both the Canadian and American ALS organizations, awareness of this devastating disease has significantly increased as have desperately needed donations. Is it the icy water that brings freeze frame instantly to my mind? Perhaps, in part. It is said that the freezing sensations caused by ice-cold water dumped over the body mimic the numbing effect of ALS. I think there is more, though, to my "brain worm".
ALS, Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis, no matter what the medical term used, is the kind of disease of which unspeakable nightmares are made. A neurodegenerative disease, ALS affects nerve cells in the brain and spinal cord leading to muscle weakness, loss of the use of limbs and problems with swallowing and ultimately, breathing. The mind and cognitive thought remain intact. Imagine dying in this fashion knowing what is happening to you and that, as of now, there is no known cure, no hope.
Freeze frame? To me it is that moment when the neurologist delivers the devastating ALS diagnosis. In that cel, life as they know it for patient, spouse and family has irrevocably been changed; future plans, altered. How does one watch their loved family member slowly experience body failure? Dear god!
My friend, Marion, experienced such a freeze frame horror earlier this year when her beloved husband of fifty years was diagnosed with ALS. Marion is remarkable; she daily exhibits quiet grace, Herculean strength and soothing calm, but behind her eyes I see the excruciating pain. In my childhood I imagined myself as the Good Witch of Pine Ridge Drive, a fairy with a magic wand who could wave her wand, swishing bad into good. How I wish today that I could simply make all well with my special magic.
Tomorrow, with the blessing of the Uxpool administration and a swell of support from fellow swimmers, Marion, Cathy and I will take up the ice bucket challenge and will "call it out" to others within our community. Tomorrow morning, however, is not about me any more than it is about Marion and Cathy. It is about Marion's Jack. It is about those afflicted with this devastating disease. It is about collecting as much in donations for research as possible. It is about finding a cure.
If you haven't already done so, please donate to ALS Canada.