Wednesday, August 20, 2014

Throwing Cold Water on Your Party

When the ice bucket challenge hit the media, I was amused and impressed that the idea was generating loads of cash for ALS research. I wondered what JDRF (Juvenile Diabetes Research Foundation) could come up with to draw similar attention.  Maybe it is a “fad”, but a very profitable one.  I hate cold water and shivered  just to watch it, and yet still laughed and called some people "babies". 

Already, much has been written about the merits of this campaign.  Hey, they raised a good amount of money. They even got celebrities to take notice. We only wish we’d thought of it first, and yes, we should all be donating to a number of charitable causes.  The ice bucket challenge brought some fun to it. 

Here is MY challenge to all of you who did the ice bucket challenge:
Look up:  what is ALS?
Describe:  how do you know you have it?
Know: what it is to live with it?
Research:  is there a cure?
Donate:  the video is cute, now put your money where your ice cubes are. 

At our house, another incurable, life-threatening disease took up residence, uninvited, changed our lives.  Before it did, I knew NOTHING of what some parents go through on an hourly basis for their children.  I knew NOTHING about parents that shook in their beds wondering if they gave the right dose and their child would accidentally die and it would be their fault.  Now, I know.

Empathy comes with great challenges, and so I think – I know NOTHING of what it is to live and die with ALS.  Because of the ice bucket challenges, I looked it up.  Here are challenges that brings more serious awareness from a wife of a man with ALS

"Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.

Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.

·    Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?”

This, this is ALS.  And so when you dump that water, and for a second feel that cold ice water on you, remember that there are people out there that live with that anxiety of cold ice water in their veins on a daily basis because they have ALS, or Type 1 Diabetes, or Cystic Fibrosis, or Cancer, or love someone who does.  This was fun, but the diseases are serious.

You will change your clothes and go back to school or work or your normal schedule, congratulating yourself that you somehow today made the world a better place.  But did you?

Come walk with me this Saturday for just a mile in my shoes.


1 comment:

Jennifer A. Jilks said...

Hello! Haven't popped by in a bit.
Interesting post. I figure I 'give at the office', since I have a 2nd client who has ALS.
It's not a pretty disease. The disease trajectory is terribly difficult on family. But slowly, their lives ebb away. My current client is such a dear, sweet man, whose wife has Alzheimer's Disease. Their son, my age -50s, lives and cares for them. It's quite the challenge. I provide respite once a week.
Good to see your post!


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