Monday, August 25, 2014

Go Beyond the Bucket

We all get caught up in a trend especially if it's for a good cause.  Whether it's jumping rope for heart health, a 5k for this or that, or some fundraiser for such and such.  Or  having a bucket of water dumped on your head by someone near and dear to you while someone else videos the event.

Usually, what we donate money to is a cause we believe in.  A cause we know something about.  A cause that affects us personally.

I was challenged to support ALS research by my brother who had the awesomest video ever...the bucket to his loader at work dumped more water on his head than any other video I've seen, seriously, the loader usually scoops a load or dirt or mulch that fills the whole back of a truck bed.  I know my brother knows what ALS is and he would love to see the disease wiped out.  So why did I struggled for more than my 48 hours to accept his challenge?  Not because I was thinking of a way to top his awesomest bucket challenge video, but because I actually felt badly about doing it.

I couldn't explain the way I felt.  I talked to my husband about it several times, and he ended up telling me to just donate money instead.  What I ended up doing was picking up my copy of Luckiest Man by Jonathan Eig and rereading the biography of Lou Gehrig...drinking ice water as I read...and donating money.  I couldn't get over the uneasiness of the bucket of ice.  I wanted to get into the hype and show my outward support for ALS research, but I couldn't get there.  I posted a post promising that the video of my ice bucket challenge would be shared once I completed it, but I might never do it.  I'm still thinking about it.

I've known 3 people whose lives have ended because of ALS, none of them family members but all of them friends or relatives of friends.  Here's the some point this ice bucket challenge seems trivial in comparison to the suffering ALS brings.

Imagine one day you hold a vase of flowers only to have it slip out of your hands because you can't grip the vase anymore.  Or, imagine having an itch on your arm but the muscles in your other arm have deteriorated in a way that doesn't allow you to scratch your own itch.  Or, the muscles that allow you to chew and swallow were too weak to...chew or swallow, what then?  The muscle that allows you to take in the very breath you breathe just isn't strong enough to let you inhale.  ALS is not a quick death, and at the end of the suffering when the body is void of muscle leaving skin and is not a physically attractive death.

I'm in no way judging the ice bucket itself.  I'm contemplating the motives of the ice bucket bearer.  Are you accepting the challenge because you're really going to educate yourself about ALS?  Did you actually donate toward the cause?  Did you choose people to challenge who would take the challenge seriously?  Do you really care more about the people who have and will have ALS more than how many views your "Ice Bucket Challenge" video gets?  Do you even know what ALS is, even in general?

I'll tell you what bothered me the most, the thing that got me pensive toward this whole "trend of caring"...when the verbiage went from "I'm challenging" someone to "I'm nominating" someone.  Somewhere along the way, the challenge for ALS awareness turned into a nomination to pour a bucket of ice on your head.  (Not for everyone, just for some)  I asked some neighborhood kids who were beyond excited about being "nominated" to do the ice bucket challenge, "what are you doing this for?"  They said several things (trying to get hits on youtube, trying to get likes on Facebook, trying to get favorites and retweets, and trying to outdo their big sister on her ice bucket challenge idea), but not a single one of the 5 kids mentioned ALS, Lou Gehrig's disease, disease awareness...I would've settled for "it's to help with some disease."  Of course, I took the opportunity to give them a 20 minute educational speech about ALS, the people I knew who had the disease, and why it's important to know what you're doing things for instead of just following aimlessly behind a fad or a trend (the teacher in me couldn't help myself).  The ice bucket challenge could've been for anything, any project...they didn't care...they just wanted to get nominated to be like everyone else.

So, do the bucket challenge, but go beyond the bucket.  Seriously, study up on ALS, donate money toward research, and help out families who are dealing with this disease right now.  Love each other beyond the ice water.  Make your life deeper than a nomination or a challenge.

I'll save you some time...Here's some ALS facts from the book and epilogue of Luckiest Man:
1.  Every year, about 5,000 Americans are diagnosed with ALS.
2.  Most patients die within 3 years of diagnosis.
3.  ALS stands for Amyotrophic Lateral Sclerosis.
4.  ALS was identified in 1874 by Jean-Martin Charcot, but medical manuals and formal medical courses still did not list it 40 years after that when Dr. Woltman (Gehrig's doctor at the Mayo clinic) started his neurology practice.
5.  ALS involves loss.  Loss of strength, loss of muscle tone, loss of speaking, loss of chewing, loss of swallowing, loss of walking, loss of holding your head up, loss of climbing stairs, loss of breath, loss of weight, loss of life.  It's not all get a few things with ALS: cramping, twitching, and muscle atrophy.
6.  In 1940, a year after diagnosis, Lou Gehrig often asked photographers to prop pencils between his fingers to make it appear that he was busy with paperwork when in fact, Lou could not hold a pencil because of ALS.
7.  Many neurologists still hang photographs of Lou Gehrig in their offices to this day.

No comments:

Post a Comment