Since he was diagnosed with the disease in January, 26-year-old Anthony Carbajal says he's had a hard time talking about the answer to that question. He has slowly started to notice the signs of the early stages of the disease, signs that he saw in his mother, who currently has the disease, and his grandmother, who died from the disease.
But in an emotional video, Carbajal explains why the viral Ice Bucket Challenge #strikeoutALS is making discussion easier.
WARNING: ADULT LANGUAGE
Click here to watch on YouTube.
The video above starts after Carbajal has completed his own goofy "sexy" take on the challenge, when it takes a serious turn. He uses the rest of the video to explain what the challenge means to him, and what it is like living with the disease, including some footage of Carabjal caring for his mom. He explains that Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease, steals the brain's ability to control movement, which results in an increasingly deteriorating condition that, since there is no cure, eventually results in death.
"That's probably why nobody talks about it. Because it's so challenging to watch. It's so challenging to see, to talk about," he said. "They don't want to talk about it. They don't want their day ruined."
Carbajal, who is engaged, had to quit his job working as a wedding photographer in order to preserve the muscles he has left in his hands and arms. Loved ones organized a fundraising page for Carbajal and his family soon after his diagnosis to help with the high costs of caring for his condition. That page has raised more than $100,000. Since he posted the video on Monday, it has received nearly 2 million views.
He also had a message for people who say they are tired of seeing videos of the challenge inundating their social media.
"I promise your newsfeed will go back to cat videos and 'Let It Go' covers," he said. "But right now the ALS community has the main spotlight, and for once in my entire life, I've seen it in the forefront."
Carbajal has challenged everyone who watches the video to complete the challenge and learn more about ALS. For more information on ALS, please visit alsa.org.