The point of the Ice Bucket Challenge has been to raise money for ALS Research, and to make a scary disease easier to talk about. It’s a beautiful movement. Apparently there’s just something really fun about seeing people douce themselves with ice cold water–especially Benedict Cumberbatch (see his great video here). What has also been really beautiful is the way all types of celebrities, arts organizations, and even politicians have become involved. Of course, there’s the criticism of individuals for not donating/donating too little/what have you, but this is social media: you literally can’t even give to charity without incurring criticism. Some sources say that the money is not going to make a dent in the research and the real way to help would be to contact your member of congress. (However, I have to say that for ballet lovers, American Ballet Theatre’s video, starring Marcelo Gomes, is a sight– I’m so used to seeing him in Prince-mode!)
But somehow, this movement has harnessed the positive power of social media and as of August 25, 2014, “Ice Bucket” Donations to the ALS Association have reached $79.7 Million; this is more than 30 times the amount of donations received in this same time period last year.
I’m amazed, and so happy that this massive force of social culture has managed to spur something that has had a real effect. So, here I am jumping on the bandwagon in my own way. With my meager readership, I want to share the video that Upworthy has dubbed “The Last Ice Bucket Challenge You Need to See– And You Really Should See It.” It was also shared on the Huffington Post, and countless other major sites. This video was made by Anthony Carbajal, who has ALS. With the challenge growing so quickly, it was extremely moving to see Anthony come forward in such a creative way, and so courageously come out and speak to (what has become) an audience of millions. I’ve embedded the video below.
It seems that this video was originally posted on Anthony Carbajal’s personal page on YouCaring.org. According to this page, Anthony recently got engaged, and his family is planning for a November wedding! You can also go to this page to donate to Anthony’s personal fight against ALS. According to the ALS Foundation, he is one of the 30,000 people in the US with this diagnosis.
While I do not know anyone personally who suffers from this disease, I do happen to know a little about it. In 2012, after two years of seemingly inexplicable decline, my father had some tests done by specialists at Emory University in Atlanta. One doctor thought it was possible that his diagnosis may be ALS. In the vein of Anthony Carbajal’s courage to speak up about something really difficult and personal, I’m going to tell you what happened.
My dad had begun to act out of character starting in Fall of 2011. We thought this was because he had retired from his job as a school principal, and had resumed his old post as a high school marching band director. He started to be late to things; to not know how to get to places he had driven for years. He began to mis-manage money and not make sense in conversations. He began to become clumsy and uncoordinated. He was not invited back to his teaching position. Then, he was bored, but as a man who had worked his entire life, he had no hobbies. Soon, strange things like dressing inappropriately (e.g., wearing dress pants and a T-shirt; putting underwear over pants) began to happen. Slowly, he stopped using our names; things that used to make him happy, like petting the cat, he had suddenly lost interest in.
We began to find some activities, like watering plants, that seemed to make him happy. But he was in another world, by June of 2012. He was also starting to lose muscle mass quickly; he was a relatively beefy man, and seeing his calves shrink was, for someone like me who spends a considerable amount of time looking at calf muscles, harrowing. One day he was trying to put on shoes; he asked me very sweetly, “Now, how do I do this, here?” waving his hands around his shoes. I tied his shoes and told him how to do it; he tied one shoe. That was the last time he ever tied his own shoes.
As he became unable to tie shoes, his appetite started changing. Obsessive/compulsive behaviors began, mainly with dishwashing. He would stand at the sink and run dishes under the water…eventually we had to hide dishes because the water bill became astronomical. Before too long, he started being confused about what to do at the table; he would just look at food on his plate and move his hands, unsure how to hold the fork or what to do with it. This was so scary, especially when he began to display symptoms of incontinence. Soon, we were feeding him. It was kind of like caring for my aging father, but over the span of one year, and he was only 55.
On New Years Day of 2013, my mom moved him into a special memory care assisted living center; helping him bathe and eat was too much for one person, even two (a close friend/nurse had been coming while my mom went to work and my sisters and I had returned to school). I literally can’t even talk about this.
Every day for the rest of that semester I waited for “the call.” And then it came. My dad had been moved to hospice, and I flew home to see my dad for what I knew would be the last time. He passed away on March 17, 2013.
In Fall of 2012, he had some tests done at Emory; he had already seen regular neurologists who had concluded what he had was Fronto-Temporal Dementia, or FTD. His symptoms lined up. Then, more conclusive tests came back. It was possible he had ALS. This was completely terrifying, and I went to find out everything I could about this disease that, at that time, I had barely heard of. Finally, it was realized that certain behavior of prions in his brain—prions “refers to abnormal, pathogenic agents that are transmissible and are able to induce abnormal folding of specific normal cellular proteins called prion proteins that are found most abundantly in the brain”– matched the description of the rare disease, Creutzfeldt-Jakob’s Disease. Before long we would be sure that this was his diagnosis. He was literally one in a million, and lived about three months longer than the doctor said was possible. I think that despite everything, he still felt like he had so much to live for.
So, I encourage everyone who is in a position to do so to donate to the ALS Foundation, or to a family you personally know, or to Anthony. If you’re not in such a position, then what you CAN do is keep this conversation alive. Help take away the taboo of talking about the “ugly” diseases; diseases like ALS, Creutzfeldt-Jakobs, Depression, and so many others. One of the very worst things about seeing my dad decline was the fact that it was so hard to explain! It wasn’t easy to say, “My dad has _______”, because we didn’t have a diagnosis at first and then, no one knew what the disease was. It seems like if something has a complicated explanation, no one will listen to you; it seems sometimes, that things need to be glamorized and packaged nicely in order to get help or attention. I hope by writing this I have made one small dent in taking that pain away from people and families affected by ALS and other neurodegenerative diseases or other “ugly” conditions that are difficult to explain. I’m sorry for not properly participating in the challenge; I know several people who would have loved to see me dump a bucket of ice water on my head–but I assure you, writing this was nothing short of the shock and chill of laying in a pool of ice water.