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:
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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