It was a moment Anthony Carbajal will never forget: standing on the stage of one of TV’s most popular talk shows, fighting for a cause that touches him and his family profoundly. All while his mom looked proudly on.
“It still feels like a dream,” Carbajal told The Huffington Post of appearing on Monday’s episode of The Ellen DeGeneres Show. “It’s so surreal.”
Carbajal, the young man with ALS whose viral ice bucket challenge video has touched the hearts of millions of people worldwide, had nominated Degeneres to take the challenge in his video. But he says he never could’ve imagined that he’d soon be standing hand and hand with her, on the stage of her show, as freezing cold water was poured on both of them.
“Our family loves you so much. We really love you, Ellen. My mom and I, we watch the show every day,” Carbajal — whose mom also has amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease — told the talk show host. “No matter what kind of struggle we felt or went through during the day, at 4 o’clock we always watched Ellen and you lifted our spirits… This is probably the best day of my mom’s and my life.”
Ultimately, Carbajal says the success of his video — and the ice bucket challenge campaign in general — has empowered him and bolstered his spirits in totally unexpected ways.
“Saying it out loud and acknowledging my fears was challenging but it all needed to be said. It almost makes me feel like… everything happens for a reason,” he said. “This diagnosis is so hard, but with so many strangers reaching out to me, with their love and their support, and knowing that more people now know about this disease; my heart is just overwhelmed. It’s really, really full.”
Carbajal, who was diagnosed with ALS eight months ago at the age of 26, told HuffPost over Skype Tuesday that he had nominated Degeneres because the positivity she exudes is exactly what the ice bucket challenge — which has helped raise more than $100 million to fight ALS — is all about.
“[The challenge] is a positive way to talk about this disease, and I couldn’t think of another person more positive than Ellen,” he said. “We need to continue a positive, hopeful conversation about ALS… about finding a cure, or at least a treatment.”
ALS is a “depressing” disease, Carbajal says. People with the condition gradually lose the ability to walk, talk, eat and breathe on their own. Most people who have it don’t live for longer than two to five years after being diagnosed.
But Carbajal says that the past few weeks have changed the way he thinks about his own future. It’s still “scary” and hard to grapple with his diagnosis, he says, but he’s now been given the gift of hope.
“This video has shown me that anything is possible. If I can make a video and it’s watched by 16 million people and it appears on the Ellen show, what’s not possible? I’m trying to stay hopeful, and live in the moment, even with all my fears,” he said.
In the next few months, Carbajal has a lot of big plans on his to-do list. A former wedding photographer, he says he’s decided to become a full-time advocate for ALS awareness. He’s currently updating his website, which will soon become a platform for ALS advocacy, and he’s planning on starting a small photo editing business which will donate a majority of its proceeds to ALS research.
Carbajal is also getting married in November, to a woman he says is his “best friend and definitely the love of my life.”
“I have to be happy with what I have, that’s the the only way,” he said. “Not to sound cliché, but I tell myself that it’s really about the quality, not the quantity, that matters.”
