ALS patient makes Ice Bucket Challenge video for those 'irritated' by the trend

“I promise your news feed will go back to cat videos but right now the ALS community has the main spotlight," Anthony Carbajal tells viewers

Click to follow
The Independent Online

A month into a trend which has seen athletes, celebrities and a former world leader being drenched with ice cold water to raise awareness for Amyotrophic lateral sclerosis (ALS), the internet has started to yawn in boredom.

Now, in a funny, frank, and deeply touching video that has garnered over 3 million views in just four days, photographer Anthony Carbajal, who suffers from the form of motor neurone disease, has delivered a blow to critics of the Ice Bucket Challenge videos.

The video begins with the 26-year-old cheekily showing off his shocking pink shorts with “Kiss my ALS” emblazoned across the back, dressed in a tiny red bikini top. Like Britney, Hayden Panettiere, and Vin Diesel before him, Carbajal nominates a string of celebrities, including talk show host Ellen Degenes, and singer Miley Cyrus, to take the challenge before his friend soaks him.

But in contrast to celebrity videos of the challenge, which have been criticised for barely mentioning the disease, the scene cuts to Carbajal in his home where he shows viewers the realities of living with the degenerative disease.

“ALS is so f*cking scary you have no idea,” he says, his eyes bloodshot from crying. 

The disease affects the brain and the spinal cord, causing motor neurons to degenerate and die which makes it increasingly difficult for sufferers to move their muscles.

When their muscles aren’t used enough, they stop working entirely and patients with ALS begin to feel weak, have difficulty speaking, swallowing and breathing. In the later stages of the illness, patients may become totally paralysed.

“I have been so terrified of ALS my entire life because it runs in my family. My grandmother had it, my mother was diagnosed when I was in high school, and five months ago I was diagnosed at 26 years old."

The photographer goes on to explain that his hands are beginning to atrophy, and that he has noticed it is more difficult to start his car, and button up his shirt. “Eventually I won’t be able to use my arms and hands at all," he tells viewers.

Over footage of Carbajal tenderly caring for his disabled mother, 43-year-old Catherine Scott, he explains: “I really hate talking about it, and that’s probably why nobody talks about it.

"Nobody wants to see a depressing person that’s dying and has two to five years to live. They don’t want to talk about it they don’t want their day ruined,” he says starkly.

“I promise your news feed will go back to cat videos and Let It Go covers but right now the ALS community has the main spotlight.”

He ends by apologising for his “rant” and his “tears”, and adds: “if I simply dump ice on my head I don’t think you’re really going to get the point”.

Since Charles Kennedy, a golfer in Florida, started the Ice Bucket Challenge trend, more than $22.9 million has been raised for the cause.