The famous ALS Ice Bucket Challenge has gone viral this past year. Friends got together to have a good laugh while pouring a bucket of ice cold water onto their friend and then posting the video on Facebook. It seems like a fun thing to do, right? But unfortunately, there’s a major problem here. If you ask each person the purpose or meaning behind this activity, the majority will simply respond, “its about ALS”, and sadly, a lot of people will not have an answer to your question.
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. So, I guess a good way of answering the question above would be with this response: the ALS ice bucket challenge is an annual event to raise awareness and funds to find treatments and a cure for the disease. And why the ice you might ask? Well, if you have this disease, it slowly takes over your body’s muscles and bones, causing symptoms like not being able to talk, walk, eat, etc. When throwing a large bucket of ice over yourself, your hands or body might feel numb for one second. For one second you MIGHT just feel the same as a person with ALS. A person that slowly isn’t able to communicate with their family, or eat on their own. An old friend of my parents used to babysit my sisters and I during summer when we were at the beach. She was always so loving around us and pampered us with gifts all the time. I remember waking up one morning, and with it not even being Christmas, she had gifts laid all over the floor for us. There was no doubt it was a dream to have her around. Just recently she was diagnosed with ALS at the age of 72. Her world was soon about to change in ways she couldn't imagine. The doctors said she had as little as 6 months to live. How do you take in that information? My parents and her family were extremely devastated and still are, considering this happened only a few weeks ago. Already she is beginning to lose her speech. When I see her, I don’t know what to say. Millions of people are diagnosed with this disease every day, which is why it is great they created this Ice Bucket Challenge, but I think it’s all of our jobs to let people know the reason behind it and to inform people about this disease. It is hard to acknowledge such a life-changing disease with just a simple act but if you’re going to do it, do it right. The world we live in is filled with sad experiences people have to suffer through, it is what we do for others that matters. I sit down not knowing what to say to my parents’ dear friend so I did the only thing I could do. Return the favor and buy her some presents.
2 Comments
Ines
3/21/2016 09:55:16 am
Renata, your writing is great! I don't know if you are an editor of your magazine, but you should be! I think that of all the blog buddies I've had, your writing is probably the nicest style-wise. Still, I have three main criticisms of your post:
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Bon
3/21/2016 11:59:40 am
Renata, this post has voice and it flows. Indeed you've crafted each sentence purposefully and to justify why ALS is a condition that has been glamorized but after all there are human stories that we often forget about. It just left me wondering though. Are you really returning the hours she spent taking care of you with presents?
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