Please read these thoughts of mine regarding the Ice Bucket Challenge and ALS... I dont normally post opinions on Facebook - I dont use it as a forum for political debates or try to force opinions down other peoples throats. But it has been interesting to watch responses and opinions form regarding the ALS Ice Bucket Challenge. ALS is a muscular degenerative disease. It stands for Amyotrophic Lateral Sclerosis, and ironically enough, youll find my stepmothers name (who has the disease) within the first three letters. When hit with the disease, the muscles deteriorate until theres nothing. That INCLUDES lungs, vocal chords, and heart... Not just inhibiting movement. Im touched so many people are helping spread awareness. Im thrilled people are asking questions regarding the impact of the videos. Im ecstatic to read people are imploring others to donate. But my question is - how many of you knew what this disease was before this challenge went viral on Facebook? The thing is - its really, really okay if you didnt. Which is why I love seeing people post videos of themselves going through a split second of discomfort to help raise awareness of this awful disease. My family has been dealing with the letters ALS for seven years now. I have watched it literally take away a happy, independent life - a life who spent the past (almost) thirty years raising three adopted boys, and one of her own. Now - my stepmother - lays in bed, with a feeding tube and on life support - able to communicate by blinking. I made my video because physically I have not experienced the pain and discomfort Amy has experienced,seeing as the ability to move was ripped from her. I did not experience the pain she went through when recording stem cell research. Do not get me wrong - I am not mad at a single, solitary person. Thank you for being a part of the discussion. Whats interesting is some of your posts asking, What could this possibly do for ALS? Well I have two things to say... 1. Were talking about it. Now people know about it. So many times I have talked with people about what Amy and my family are experiencing and a common response is, How can that even happen? Thats the thing. We. Dont. Know. It can happen at anytime... To (I knock wood and choke up as I type this) anyone. Amy tripped and began to lose her mobility. But now that people are beginning to know - maybe we ALL will know someday soon. Maybe we can stop it. 2. Okay - good. Were talking about it, were thinking about it. Now - we donate. Its not a challenge. Its not about ice. Its about donating. Its about supporting. If you cant - thats okay. If I could I would donate to every organization I can. I would, but I cant. If you can, do. People ask, Why does it have to be ice? Well... I actually dont know. Maybe its cause it shocks the system like ALS - or - its a silly thing that might actually get people to talk about this awful disease that not only rips the victims lives apart, but also their family and friends. I love you all - thank you for asking questions. Thank you for believing, not believing, whatever you may chose. But guys, we NOW know what it does, we know people live with it, and now its time to do something. And though its small and weird, we started by dumping ice on ourselves. Thats big in my book. Some of you may be asking when this ice bucket challenge thing will be over - it may be tomorrow, a month, who knows - but dammit it put a smile on Amys face and you all got a thank you. So much love and admiration for you all. Michael
Posted on: Wed, 13 Aug 2014 02:55:09 +0000
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