Unless you live under a rock, which I doubt, you have probably heard about the latest internet trend – The Ice Bucket Challenge. It involves dumping a bucket of ice water over your head in recognition of the degenerative illness ALS and nominating others to do the same. If you choose not to, you must donate a charitable amount of money to the ALS Association in the United States. It is also referred to as Lou Gehrig’s disease, after the famous baseball player was diagnosed in the 1930s. Here in the UK the illness is known as MND (Motor Neurone Disease), and the MND Association, as well as Macmillan Cancer Support, have received a great deal of funds thanks to the internet phenomenon.
ALS, or Amyotropic lateral sclerosis, affects the spinal cord and the body’s muscles. Motor neurons slowly degenerate and die, making it difficult to move. When muscles aren’t used enough they stop working. You begin to feel weak particularly in arms and legs, and towards the end the illness affects swallowing and breathing, making speech, and eating, difficult. Patients may eventually become completely paralysed, but the mind remains sharp.
There is no known cause for ALS, but some cases have a proven hereditary factor. There is also no cure – the money raised from the Ice Bucket Challenge will go towards researching one.
So far the challenge has raised awareness of ALS in a way that the Association could only dream of a few weeks ago. Making even a penny a month donation used to be a huge ordeal and over $40 million has been raised since the challenge started in late July. That’s more than the association received during all of 2013, according to the Internal Revenue Service.
Donations from actors, sport stars, musicians, politicians, executives, and other celebrities have made a huge difference not only in the amount of money raised, but of the exposure the illness has received. Oprah Winfrey, Justin Timberlake, Lady Gaga, Jennifer Lopez, Ashton Kutcher, Mark Zuckerberg, and Bill Gates are only a few that have risen to the challenge. Justin Bieber has done it twice. Charlie Sheen, however, threw a bucket of $10,000 over his head, making the sincere comment that “ice is going to melt, but this money is actually going to help people”.
But, who am I to talk about ALS?
My kind, inspirational, optimistic, and all round beloved grandfather was diagnosed with the disease early in 2013. In January this year, he passed away in his sleep, unable to move, swallow, speak, or even breathe by himself. He had tubes in his stomach. He could only breathe real air for 30 minutes each day. He was put in an elaborate, electrical wheelchair and slept in a personalised hospital bed. He spoke by typing on a machine. My caring and patient grandmother was his 24/7 helper and each day, she had to watch her husband since 50 years whittle away.
It was an emotionally draining time for all of us. My grandfather lived his life with the optimistic philosophy that we should take each day as it comes and not worry about the future. That was how he handled the situation. Having been a painter and writer for many years, the loss of his hands was a particularly hard blow. He had so many ideas, of poems and paintings and even a book, that he could never put to paper. The illness took his limbs, but never his mind. He could only try to cope with slowly losing the ability to do all the things he had always loved doing, and that, I think, is where the true horror of the disease lie.
The Ice Bucket Challenge means so much more to those suffering ALS, and those who suffer along with them, than the internet has given it credit for. A little comedy is appreciated as long as the donations are made and awareness of ALS is made prominent over the celebrity PR. Only Charlie Sheen and Bill Gates have yet made clear the challenge’s true purpose.
One YouTube video in particular deserves praise, and recognition, for its message (see the attached video).
Let’s hope that the Ice Bucket Challenge continues giving light to the true horror of ALS until someday, hopefully soon, the disease will have found a cure.