Wednesday, August 20, 2014

ALS Ice Bucket Challenge

So I was nominated... twice!
On the same day no less!
By two completely different people!
hoo... ray...  (imagine me: sitting down; not-so-thrilled face).

Don't get me wrong, I DO think it is wonderful that so many people have been donating to ALS research (ALS announced Tuesday, August 19th, that they've received 22.9 million in the last four weeks), but in and of itself, I don't think the Ice Bucket Challenge is all that "great" if it doesn't lead to greater things.

I have watched many adults do this... simply because they'd been "dared," "challenged," or "called out" to do it (and of course, most Americans cannot be "shown up" or "called out" without responding). Personally, I've never much cared what people think of me... just try to do my best at the things that "matter the most" to me.

There are 3 main things that bother me about doing "The ALS Ice Bucket Challenge" --

1. What I like least: it appears most of the adults participating in "the challenge" do not know what ALS is, they don't know what it does to its victims, or anything else about ALS except (because someone told them so) it "is a good cause." (Even heard one person say the "ASL Ice Bucket Challenge" the other day... ASL: American Sign Language... yeesh. They dumped ice water on their head and could not remember why???)

Have seen numerous kids (and teens) participate as well... they seem want to do this "challenge" solely because they get to dump water on themselves while fully clothed... with their parent(s)' permission. These kids don't have a clue what ALS is... and they do not care what it is... as long as they can get soaking wet, then it's "fun" for them.

ALS is scary, debilitating, and usually fatal in a very short period of time, but because of this challenge, many will only remember ALS as that "fun challenge" they "did back in the 'teens." ALS is not fun. There are many people slowly asphyxiating, trapped in their own heads, dying a slow miserable death... and their grief-stricken families can do nothing but watch their loved ones die a slow, excruciating death right before their eyes. This challenge seems to me to cheapen their suffering and their courage to fight the disease.

2. The next thing I don't like about the challenge: there are so many other things that cause suffering to many MORE people. According to their own numbers (the ALS Foundation's website) there are somewhere between 30,000 and 40,000 cases of ALS in the US right now. Not "very many" cases when considered against the total population of the US. In my lifetime, I cannot remember personally meeting or even "knowing of" more than 1 or 2 people that have contracted ALS.

There are many other things in this world that could use research money: Down Syndrome (over 400,000 in America), or (less well-known) Williams Syndrome. Williams Syndrome is similar to Down, but its rate of incidence is growing quickly (used to be 1 in 20,000 live births were affected, but studies as recent as 2008, indicate it's now closer to 1 in 7,500 live births -- nearly the same percentage of Americans have Williams as have ALS). The people affected by Downs, Williams, and many other "syndromes" cannot be "fixed" (because they are fully "people" and need neither sympathy nor medication), but perhaps more research could help those born with these challenges have fewer other difficulties: developmental, thyroid, respiratory & cardiac problems, or... more research could just lead to helping them lead better, more-fulfilling lives.

Another, more wide-spread problem that could use research money is cancer. There are nearly 14 million survivors of cancer living in the US today. (I've lost numerous friends and family to cancer, and am glad to know several survivors.) Yes, ALS is very scary, and there generally is no possibility of "remission" (like cancer patients pray for), but between 4-6% of our population has had cancer and are "in remission!" Not "1 in thousands" is affected (like ALS), but more frequently than 1 in 20! That number is particularly staggering because it does not take into account the number of people that die of cancer every year (over 560,000/year just in America) -- and we've still not reached the extent of all of the "problems" that affect people... and could use immediate donations for research: Alzheimer's, Crohn’s Disease, Colitis, Bell's Palsy, Ebola, Meningitis... and the list goes on and on.

I do have some concern that all the money "The Challenge" raises for ALS may tend to "dry up" donations to other medical research charities this year... other problems that could be researched... but instead will result in less chance to offer relief (or prevention) to many, many others... because of a fun fad. (Hopefully, I'll be proven wrong.)

3. Lastly, I'm not impressed by the fact that people don't seem to give much consideration to whom they're challenging; they just name people that they think would look most hilarious getting wet. To me, there seems to be at least 2 types of people not considered when "calling out" others for this challenge: those of "the challenged" that already donate large portions of the money they earn to multiple charities (thereby giving money they may've spread to multiple charities to a single charity), as well as the other people receiving a "challenge" that may have medical problems of their own. Medical problems that could make a cold dunking dangerous to their health. I wonder how many people know that individuals with heart conditions can stop their heart with a cold water shock (doesn't "usually" happen, unless they're overheated first or swimming, but it is possible), and there are many people that don't even know they have a heart condition. A dare isn't something on which I'd want to risk my life. Other "medical issues" offer less chance of death to the participants, but would still be an "unsafe activity" for them to consider. For example, I'm prone to ear infections... in both ears. No water should ever be poured on my head; even showering must be done very carefully or I risk losing my hearing (in one or both ears). Yes, I could dump ice water on my head while wearing ear-plugs, but I'd rather not risk my health or my hearing because of a dare... with a wife, 5 children, and students to teach daily, it would be irresponsible of me to allow myself to be doused. (If an earplug were to fall out from the force of the water.)

In conclusion, I believe more people should give much greater consideration to the seemingly insignificant choices they make daily... and not just for this challenge, but also for other "fun" (irresponsible) actions that can impact their families, friends, co-workers, and others negatively (DUIs came to mind immediately). Find things that "matter" before jumping headlong onto another bandwagon.

Overall, I'm not "bothered" that this challenge exists, and I do hope it continues to help those with ALS... but if it stops there, I'd consider it a failure.

I believe it would be much better if this ridiculous little fad would:
A. bring (to each one participating or watching) a greater societal awareness of the suffering of others,
B. make people more mindful of how they can help others less fortunate than they are -- by donating their money, time, AND effort to many different needy causes, &
C. help everyone realize that life doesn't have to be full of "fun" all the time; seriousness and responsibility for one's actions is needed every day... especially if there is a chance of dropping huge chunks of ice... or large, heavy cans full of water upon the heads of others.

(Yes, I do particularly enjoy watching the "Ice Bucket Challenge Fails" tho -- please, keep those coming.) ;)

1 comment:

The Lady of the Holler said...

Thanks for the Williams syndrome shout out! I've been wondering if I could do the challenge to support WS instead of ALS . . . ;o)