Why I Took the ALS Ice Bucket Challenge


One of the greatest diseases is to be nobody to anybody. -Mother Teresa

At first it was fun.  It went viral.  Everyone was doing it.

And then the backlash.

People began to post on Facebook: is there a point to throwing water over your head?  How is that really helping anyone?  Is it over yet? 

Memes began to surface.  One I saw had children from Africa and stated "Do you know how far we would have to walk for that bucket?"  Or asking why we are dumping all that water during a drought (I am guessing there is a drought going on somewhere). Or simply making fun of the phenomenon that began to take over everyone's news feeds-Facebook, Twitter, even the local news and sports sections of the newspaper. 
Social media commentators began challenging the challenge takers: do you even know WHY you are doing that?

Well, yes.  I do.

Amyotrophic lateral sclerosis, also known simply as ALS, or sometimes Lou Gehrig's disease, is a progressive (it gets worse), degenerative (breaking down) of the neurons (nerve cells) of the brain and spine.  As the neurons die, so does the ability to control muscles.  Typically, individuals will notice muscle weakness which progresses eventually causing the person to lose the ability to function.  They become paralyzed, unable to speak, unable to swallow, unable to breath on their own.  Their bodies betray them.

And while the challenge may seem silly to many, the fact is, according to Time, that the awareness is working.
More than a week after the Ice Bucket Challenge first went viral, people keep dumping ice on their heads, and the ALS Association keeps collecting money. The organization’s national office has received $5.5 million for Lou Gehrig’s disease research since July 29, compared to $32,000 in the same period last year.
I would bet that most people taking the challenge don't know anyone who has been affected by this disease.  No.  I do not have friends or family who have ALS either.  I have cared for patients with this disease, and I have cared about a friend whose father eventually died from ALS.

What I do have, however, is my own body which betrays me.  My particular disease is not life threatening, simply annoying and painful.  The pain makes it difficult to walk when I want, to sleep when I want, to sit when I want, to pay attention when I want.  It is a far cry from the tragedy of a diagnosis of ALS, but I know how helpless one can feel when their body betrays them.  When you begin to grasp the fragility of this physical shell that encases a vibrant soul.  Even imprison it.

I am one.  I am only one person and how much can one person do?  I am only one of the 7.05 billion people on this earth.  Only one American in a sea of the 316 million people who call America home.  And some might say, of those 316 million, only 30,000 have ALS.  But if I were one of THAT group, I would hope that you would do something as silly as dunk yourself in ice water, if only to show that I am not invisible.  That I am not alone. 

Now, consider yourself challenged.  Educate yourself at ALSA.org.  Donate here.  And if you are so inclined, go soak your head.  In ice water.

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