A Challenge, a Disease, an Idol and a Movie

by - Monday, September 01, 2014

This is going to be one long post.

The past couple of weeks the whole world has been "flooded" by short videos of people taking the Ice Bucket Challenge and in turn nominating others to do the same. The first few days I have to admit I found the notion interesting, as the reason behind it was raising awareness about Amyotrophic Lateral Sclerosis (ALS)/ Motor Neuron Disease (MND) and donating to the cause, plus it was a simple and entertaining thing to do (just watch Benedict Cumberbatch's Challenge video, it was by far the best of them all). Unfortunately, after the first week of videos going viral over the internet, the whole thing lost its standing in my eyes and those of many other people.

Don't get me wrong here. I'm an avid supporter of any campaign that raises awareness about any disease or major global issue, and that's because I passionately believe in the power knowledge yields. I don't believe in supporting causes just for sake of pretense or appearances. I choose the causes I support after careful consideration over the information I have about them and judging which ones affect humanity the most. Stating that, I decided NOT to follow the "hype" after being nominated to take the Challenge myself. Let me explain why:

"ALS is the most common of the five disorders that classify as motor neuron diseases, a group of neurological disorders that selectively affect the cells that control voluntary muscle activity including speaking, walking, swallowing and general movement of the body. They are progressive in nature, cause increasing disability and eventually death." (source Wikipedia)  

What is left unsaid here is that it's a rare disease that affects a very small amount of population, with a death toll way smaller compared to other major diseases like heart or chronic pulmonary ones. Again, I don't think it's bad this cause received all this publicity and donations, personally though I prefer to donate to other charitable causes, like UNICEF (blog post here). But if you're still interested in helping the ALS/MND cause, then you can text ICED55 to 70070 in order to donate £5. I have a question for you now. Did you know anything about this disease before the Ice Bucket Challenge Campaign? Or have you met a person that suffers/suffered from it before? I'll answer my own question with a short story.

As a teenager I loved two things above all else, music and astronomy. Both had very strong representatives, but two managed to stand out from the crowd and become iconic idols for me. One was Jim Morrison (fourteen and in love with a dead poet) and the other was Stephen Hawking
The man with the most brilliant scientific mind of our century was diagnosed with ALS at the age of 21 and was given the life expectancy of two to three years. He is now 72 and still active in his many fields of study. 

Hawking belongs to a very small percentage of ALS patients where the disease progresses in much slower rates, thus allowing him to survive for as long as he has. Although his body is almost completely paralysed (apart from a little movement in his fingers), his mind never ceased to work in full capacity, as if overcompensating for the loss of muscular movement.

Being the inquisitive person I was (still am to this day mind you), after reading some of his theorems I wanted to know more about the man. That's when his photo first popped in my screen and I wondered what it was that had put him in a wheelchair. So I researched. Τhat was the first time I heard of motor neuron disease. 

Staying true to the theme of this whole post, I want to close with a movie suggestion, the "Theory of Everything" (I know for sure I'll be watching it when it hits the cinemas). It shows the events in Stephen's life during the time he met his first wife and after he was diagnosed with ALS. It's a movie about hope and determination, love and support. Most importantly, it's about a man's willpower to better his life and in extent ours, with all his contributions to science throughout.

Now I don't know about you, but to me there's one more reason why I'll be watching the movie. It's called Eddie Redmayne.

I did warn you at the beginning it would be a long post. I also guess some people will be disappointed I didn't douse myself with ice cold water but "c'est la vie"! 

Until next time,


PS. Funny coincidence the name of my blog is "Everything Dora" and the name of the movie is "Theory of Everything". Made me giggle.

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