I was tagged to either donate $100 to the ALS foundation or pour a bucket of ice water over my head.
I am not playing.
I don't understand why people are outting themselves for being so cheap that they would rather douse themselves with ice water rather than give money to find a cure for ALS.
I have two friends who have suffered and died because of this horrific disease. Watching their families grieve was not something I would like to repeat. So instead of covering my head in ice water I am donating to ALS in their names.
What bothered me the most was the laughter that ensued when Abby watched the Facebook postings. I understand this "event" was started by an ALS warrior. A young man hoping to spread awareness. Awareness is so important, I get it. But to me it hit differently. Forget awareness how about raising a cure?
My friend's husband was aware, to the very difficult end, of what was going on with his body. ALS affects your voluntary movements. For example, jumping. But it does not affect your involuntary movements (heartbeat). His mind perfectly intact while his body refused to move. That is not funny. It is not something to do as a dare, a joke or just because a friend tagged you in a post.
I explained why I was refusing the ice bucket challenge to Abby and she agreed. It made no sense to a 10 Year Old why a person wouldn't give to charity. She might not understand what ALS is, but she knows her friend at school who has MS. She is aware that there is disease and suffering. At 10 Abby gets that it is fine to be aware but that acts should be put into funding.
My friend who has a family member ALS is killing put it best:
ALS is devastating.
It is not being able to hold your newborn son in your arms.It is not being able to talk to your daughter about her day at school.
It is about watching your beloved angry, frustrated, hopeful, hopeless, depressed, anxious.ALS is about losing the ability to walk, talk, breath, scratch, wipe, eat, blow, run, write, sing, climb, drink, type, roll over, stand, sit, open and close everything, drive, swim, step, dance, draw, click, dial, wash, hum, brush, cough.
ALS is not a cold water challenge.It is not a video showing a person getting splashed or feeling the shock of the cold water as it hits a face. ALS is needing to call for help when you can’t wipe the cold water off your face by yourself because you can’t move your hands.
(Thank you, Jennifer for allowing me to use your tribute)
I agree with Jen. If you have ALS and this is how you want to create awareness, I am so freaking proud of you. What bothers me is that I don't want it to become a joke. It isn't funny. You don't just do the ice bucket. You pay it forward because you are one of the lucky ones that can.
In one week of ice bucket challenges the Massachusetts ALS received more than $168,000 in donations. Abby asked why can't people do both? Seriously she just wanted to dump a bucket on my head. Not to be a spoilsport I agreed.
Here is my challenge to EVERY PERSON reading this post:
(purple glove explained tomorrow)
How about it? Will you donate $1 or $5 or $100 or any amount you can afford to ALS AND complete the ice bucket challenge? Abby will be donating and so will her parents.
Consider yourself, by reading this, "tagged".
To find out more about the ice bucket challenge started by Pete Frates, a man with ALS who wanted to promote awareness, read his story here. For more information regarding ALS and resources for assistance, please visit the ALSA.ORG.