The above is me with my great-grandmother & grandmother in 1997.
The internet has been inundated over the last week with videos of people dumping buckets of ice water on their heads in support of ALS research. Like any trend, it has had its staunch supporters and vocal detractors. Criticisms range from cries of wasted water, slacker activism, and that this inane activity is distracting people from more pressing concerns. I even came across a comment where someone asked why we care about a disease that afflicts so few.
In the summer of 1998, ALS killed my grandmother. She essentially drowned in a recliner when her lungs ceased to function ending her healthy mind’s imprisonment in a functionless body. She was 55. The best case scenario for someone with ALS is to end up like Stephen Hawking—completely paralyzed (unable to move, unable to speak), but mentally alert and alive. The most likely scenario is to become increasingly paralyzed until the body can no longer support itself and the patient dies. Usually within 2-5 years. ALS is death in slow-motion.
My grandmother was a fiery Cuban immigrant who struggled to raise six children while adapting to life in a foreign country. She was tough, feisty, and loud. She was loud when she was happy and loud when she was angry and she adored all of her grandchildren even though I came along sooner than she would have liked (She was 36 when I was born). She’d ask you to buy “hamburger bones” and to put “the shits” on the bed. She had a nice couch in the dining room no one used covered in plastic we weren’t allowed to sit on and ceramic frogs with genitals. She always had a closet full of 3-Liter Pepsis. If the city would have converted the kitchen tap so it dispensed Pepsi, I’m sure she would have been ecstatic. She drove a huge Buick and refused to take crap from anyone. She was tough and she loved to laugh. Loudly.
We watched her body deteriorate and no one could do anything to stop it. A woman who could bean you with a slipper from across a dark house with a sniper’s precision became unable to feed herself. My mother and aunts had to bathe her. On multiple occasions, as her teenage son lifted her onto a portable toilet I would duck out of the living room so she could have some semblance of privacy. This tough independent woman became dependent on other people for every tiny aspect of life the rest of us take for granted. She insisted on signing her own checks for as long as she could, but eventually that too became impossible. ALS stole away her body and her dignity. Eventually all she could do was sit on a recliner and watch Spanish TV. Many years later, I appeared briefly with Moodoo Puppets on a Telemundo station in Los Angeles. It saddened me that my grandmother was no longer around to see that because it would have made her so happy. When I started pursuing filmmaking, She constantly encouraged me to move to Mexico where I could make it big on Univision “like Erik Estrada.” She also constantly pestered me to go to Spanish dances with her when I was a teenager. I regret that I never did. The last time I saw her, she was sleeping in the recliner. The next morning I was startled awake by the phone. I ran to it already knowing what I was going to hear. For years, I dreamed she could walk again. She would barely be in her 70s if she were still alive.
ALS doesn’t just affect a small number of people, it affects everyone that cares for those people. I hate that my grandmother had to spend the end of her life confined in a useless body confined to a chair. I hate that my great-grandmother had to watch her only daughter slowly wither away powerless to stop it. I hate that her youngest son, Steven, had to shoulder this experience during his high-school years. I hate that the world is a little less loud now.
Regardless of any qualms you may have with the Ice Bucket Challenge, it is working. A week ago, most people wouldn’t know the difference between ALS and anti-lock brakes. As of this writing, over $40 Million has been raised. If people get to have a little fun at the same time dousing each other, I’m okay with that.
Nerdist asked me to work on their Ice Bucket challenge video a couple of days ago. As I was compositing Chris Hardwick onto Tatooine I realized it would be ridiculous for me to accept payment for the job. I asked them to instead donate additional money to the charity. They gladly did so in my grandmother’s name. A few hours ago I received a video from Steven (my younger uncle) challenging me. It wouldn’t be right for me to walk away from that challenge, would it? Where’s my bucket?