This probably won't make me very popular with some of you, but I'm here to speak for those who cannot. Those with ALS, trapped in their bodies with sound minds because of a disease that up until recent weeks has received little to no attention.My problem is that when anyone posts a negative comment about the ice bucket challenge my emotions kick in big time, and that just may be my problem. If that's your opinion, you may not want to read on. I've never seen the same reaction to any campaign for Cancer, Alzheimers, Parkinsons, Chicken pox...whatever. So why the outrage?
Why is anyone being negative about the ice bucket challenge?
Do you know what ALS is? Do you know someone with it? Do you have it? Do you know the story of how the challenge started?
If you answered yes to any of these questions, I highly doubt you have posted against the challenge.
I am so lucky that I have not been affected by ALS, nor anyone I know in our family. However, 5 years ago Adam took a night shift job to help a local ALS sufferer and advocate Mario Vella. Adam's job was to turn Mario every few hours and tend to any needs that he had. Mario had already lost the ability to move from the neck down, and his speech was down to grunts and slurred words that only his Dad could understand. Mario, in his early 30's with a young daughter now lived with his parents who took care of him 24 hours a day. Adam was there to allow Mario's Dad the luxury of sleeping for a few hours straight without interruption. I don't really think I need to go into more detail about how the situation that Mario and his family are in. From the outside, it seemed like a horrible struggle, and it must be. But from the inside, Mario had far surpassed the doctors premonition of living 2-3 years, and is still living with the disease today. Each year he helps host a golf tournament in London to raise awareness for a disease that so few people know about with a smile on his face and his daughter by his side.
It was a brief stint that Adam had with Mario, but it sure made us realize not only what the disease was, but how someone can see the positive side of what could be seen as a terrible circumstance.
| Mario with his family. |
ALS is more commonly known as Lou Gehrig's disease. He wasn't the first affected by it, he was simply the first "celebrity" to have it, bringing it to the wolds attention. Commonly affecting those between the age of 40-70, the nerve cells attached to the brain and spinal cord are affected, shutting down the body from the neck down while the brain stays 100% sharp. The person loses the ability to walk, speak, laugh, hug...all but blink. Pharmaceutical companies deem the disease not profitable due to the short life span of it's victims, so money for cures is not funneled that way unlike breast cancer and other terrible diseases. Not profitable. The human afflicted by it is not worth the research.
So a few guys (one with ALS) decided they would try to bring a voice to a voiceless disease by dumping ice cold buckets of water on themselves to simulate the feeling of pain and a frozen like state that the disease brings. You can choose to donate, take the bucket of water on, or do both. Then, like a chain letter, they started by nominating others to do the same. Have some fun, become educated and aware and see what happens.
70.2 million dollars happened to date. More donations than the organization could have ever dreamed of, and it continues.
So for those of you that think the challenge is silly, the money isn't going to right places, you don't agree with their research methods, you think it's a waste of water etc. remember a few things.
1) The point of the challenge is to RAISE AWARENESS! Most people can't name what ALS stands for let alone the details of the disease. I think they've done that.
2) The other point of the challenge was to remind people that donations to ANY organization are important no matter what the cause. How many people are running/biking/walking/swimming for things and it seems to become redundant? If you don't agree with methods they use to research, donate to an organization you DO agree with! This was a fresh look at an old platform. They did that too. Money is needed for research in regards to ALL diseases!
3) Walk a mile in their shoes before you start complaining. Or better yet, sit on a couch for 5 minutes without moving. Don't move your head, your arms, don't speak, not even a whisper. Feel that itch? You can't scratch it. See your baby? You can't hold her. Don't like the program on TV? You're stuck with it. Only your eyes can move, but your brain is screaming at you to get up and run! You can't. You can only watch and wait. That is what an ALS sufferer deals with every day, for years.
So call me silly as I stand in my backyard with my bucket and donate online, and then ask others to do the same. And yes, there are those that are missing the point of the challenge...but, if I was afflicted by something and wanted people to pay attention, the least I hope they would do is get a little wet on a hot summer day.
I am blessed to be able to even type this out, even though it may offend some people that I know well, but I figure if they are able to say what they want, so am I. I fight for those who don't have a voice.
I could not imagine not having a voice, although I'm sure some people would appreciate a day off from mine.
http://www.alsa.org/
Challenge Accepted.
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