If you think the ALS Ice Bucket Challenge is stupid, useless or not worth taking up your social media space, then you really, really need to watch these two videos. Because in these two videos are people who actually have Lou Gehrig's disease, and they represent the people who cherish each and every single video uploaded that shows your friends, families and favorite celebrities dousing themselves in ice water.
First, meet Anthony Carbajal, a 26-year-old man who was diagnosed with ALS in January 2014 and has been taking care of his mother who is in the late stages of the same disease. In the touching, emotional video, he shows his daily routine of caring for his sick mom and he bravely talks very openly about being diagnosed and what it's like to know that you are headed toward a hard, painful future.
To Anthony and his family, the ALS Ice Bucket Challenge is not just a social media trick. It means that people are talking about the disease and, even better, it means that people are raising funds for much-needed research. Most importantly, it gives suffering ALS patients some hope for their future and the future of any family members who might be diagnosed later in life. He says:
I promise your newsfeed will go back to cat videos and "Let It Go" covers, but right now the ALS community has the main spotlight. And for once in my entire life, I've seen it in the forefront…This is the first successful advocacy that we've ever really, really, really had and I am so, so, so grateful. You have no idea how every single challenge makes me feel. Lifts my spirits, lifts every single ALS patient's spirits. You're really truly making a difference. We're so, so, so grateful.
Next up is mother of two Lorri Knox Carey, who is living with ALS and used her Ice Bucket Challenge video to talk about her experience with the disease and to thank everyone who has kept ALS in the spotlight. She notes:
Since I still have the ability to speak, I feel moved to say a couple things on behalf of the ALS community…When you have a fatal disease that doesn't have a cure, it's on your mind 24/7. But to see people who are not associated with the disease in any way, to see celebrities and politicians raise their buckets in the fight against ALS, to talk about it, to share videos, to have conversations and donate, it is completely emotionally overwhelming. It is like everyone else has come into our world. So thank you.
So next time you want to roll your eyes at another Ice Bucket Challenge video, remember Anthony, Lorri and everyone else affected by ALS. Consider donating if you haven't already, and if you have a bucket full of ice water in your future, hopefully seeing people like Anthony and Lorri sharing their stories is worth the few seconds of pain that come with the freezing bath.