Sunday, August 24, 2014

Pissing in the Ice Bucket

     This could also be called, "Why do people have to make it so hard to do good."

     Like so many others of us, my Facebook feed has been inundated with the ALS Ice Bucket Challenge. An initiative to raise money and awareness surrounding the neuromuscular disease. It has succeeded beyond anyone's wildest hopes.

     This cause is near and dear to me, the person I live with was diagnosed with the ALS almost 2 years ago. I've watched him go from gym rat to being barely able to cross a room in a walker. It is a devastating disease. The median survival rate is 39 months, only 20% survive 5 years. To add insult to injury, his is probably familial. He lost his mother to ALS so knows what is in store for him before the end.

     And what is in store. Losing the ability to walk, talk, swallow or breathe on your own. Unable to care for yourself. Dependent on someone else. Locked inside a failing body.

     With almost no treatment options, maybe you can imagine how excited and grateful I was to see the outpouring of support flooding across social media. I'm not sure people can understand how truly thankful I am to everyone who took the time to accept the challenge, pass it forward and donate.

     The ALS Society has been a God sent. They provide equipment and support to thousands of people living with the disease and their caregivers. We couldn't afford to buy all the equipment they have provided to keep him as functional and comfortable as possible. The caseworkers have helped navigating the medical and social assistance worlds that can be confusing and overwhelming.

     Despite all the good, there just have to be "those" people.

     To all the people bitching about wasting water I really don't have any words so here is a picture.

     Yes, I understand potable water is a problem. Myself, I try not to waste water in my day to day life. I don't, and I bet if you talked to any ALS sufferer or their caregivers, consider one drop used in this campaign to be wasted. If it makes you feel any better, dumping my bucket of water was the closest I got to a shower that day and probably the day after. I'm pretty sure my fellow caregivers have missed enough showers to cover all the challengers and then some.

     Pamela Anderson came out very publicly criticizing the organization for animal cruelty in their research. I understand and even support her stance. If PETA's stats are even remotely correct with a 92% fail rate in testing from animals moved to human trials, there has to be a better way. But, the cause is not the organization. The organisation in question doesn't just use the money for research. Finally, you can earmark what your donation is used for with in either the ALS Society or the ALS Organisation. If none of that assuages your conscience, donate to an organization like Lotsa Helping Hands. They provide support to care givers of all types, ALS being one.

     In short, you can support the cause and stay true to your own moral compass. We, ALS suffers and their loved ones, don't have time for the medical profession to change it's ways, we need help in the here and now. Had she accepted the challenge she could have helped raise awareness of ALS and her cause by explaining the how and why she donated the way she did. Win, win, win. Instead, well ... am I alone in thinking smug, self righteous bitch? Even though I know that's not fair. She has done tons of charity work.

      Jim Riggs came out against the challenge based on religious reasons. God doesn't want us doing embryonic stem cell research. Again, I can understand your objections based on your beliefs but I must have missed that " turn a blind eye to suffering unless they believe exactly as you do," day in Sunday school. This is not the kind of Christian charity I was raised on. Jim, same advise for you as for Pamela. If you want to help, there is always a way that doesn't compromise who you are or what you believe in.

     If for some reason the point of this campaign still eludes you, let me spell it out. H.O.P.E. It's been over 70 years since Lou Gehrig died of this disease that bears his name in the public's memory. Were he alive today, his treatment options wouldn't be significantly different than they were then. Let us hope. Stop pissing in the Ice Bucket.