Why We Care About The Ice Bucket Challenge

Mom

Mom

This is written in the loving memory of my Mom, Diane Littlewood.

The Ice Bucket Challenge is important to many people. It’s not just a fad or a mechanism for over-glorified attention seeking behavior. It’s a way to show compassion, help others and spread hope to those with a deadly disease. It’s a way to remember those who have been taken too soon by a deadly disease.

I’ve heard radio DJ’s compare it to fads like planking and they wouldn’t participate because it was stupid. Shortly after they continued with the fart jokes and insults to continue their pursuit of popularity.

I’ve read criticisms that it’s a waste of water and an insult to 3rd clean drinking water. I’m okay with that rationale as I am not one who wastes water and try to instill those same values in my kids about not being wasteful.

One criticism that I’ve seen is that most people don’t know why they’re doing it, from what I’ve seen, the speeches given in the videos explain why they’re involved and many videos tell of a link to someone with the disease.  If these people didn’t know why they were doing it to begin with, they do now from how widespread this has become.

With increased marketing of this challenge over the past two weeks on Facebook, the NFL and other media coverage, I’ve had an opportunity to remember my Mom more often. I’ve been enjoying it and appreciative for the silly premise that has not only improved public awareness for ALS, but has also generated increasing revenue for research and cure development.

Did you know that it’s been almost twenty-five years since my Mom lost her life to ALS? With all new medical advancements and medications for disease management, we still know very little about ALS. For those of us who have witnessed loved ones struggle with this disease, we know how crippling it can be and what a challenge it is to provide love and care to those struggling.

From age 10-14 I watched ALS progress through my amazing Mother. At first, her motor skills would show deterioration, then speech, walking and communication was difficult. Eventually, she was confined to a wheel chair. Then, she needed something to help hold her head up as her neck was too weak to do it and had a few devices available to her to help her communicate with us. Eventually she was completely immobilized, unresponsive and it was her time.

That’s the very short version of her battle with ALS. Today, I want to spend more time writing to celebrate her life. She was an amazing Mom, not defined by the disease that ultimately took her life. She’s why I am the person I am today. I talk to my kids about my Mom as much as they ask. They know she’s in heaven and that she had been very sick.

There is an ALS walk every year that we participate in and help raise money for the search for a cure. Kerry’s family in Wisconsin also participate in honor of my Mom (Thanks for organizing, Diane!). It is hard to see people at this walk who have the disease, especially after everything my Mom and my family went through so many years ago. However, I find a great deal of solace knowing that awareness is raised and funds are collected to help other people afflicted with ALS and also help their families celebrate them. There is technology and methods of care and comfort that did not exist during my Mom’s battle, but are now available because of the contributions of support and funding for research on this disease.

In the past 2 weeks, there has been almost $10million raised for ALS and it has been awesome for me to read about it every day and watch these videos of friends that support something that’s been held dear to my heart for most of my life. Whether they knew it was important to me or not, they are doing something great by participating and following through to donate. The rush of freezing water over their heads is just a bonus.

To be honest, the trigger for me to write about this was all the naysayers that I read on Facebook, saying they don’t care about this challenge. In fact, one of my young family members posted that “Even Lou Gehrig is sick of the Ice Bucket Challenge.” That hurt, although I’m sure that my young cousin barely remembers my Mom. As I called him out for his comment, I wondered what a 20something was doing on Facebook anyway and hoped to educate him on the importance of raising awareness and money for this disease is for our entire family.

We use social media to promote what we care about. If there is something that is very prevalent in our news feed, we may have an opinion about it and tend to be negative about it if it’s not important to us. We all have the things we care about and eventually you’re going to see something that affects us personally like this has for me. Whether it’s Cancer, suicide, poverty, famine, Diabetes, etc. as we age, we’re all going to have things like this that we see will press our buttons. It’s important that we be respectful and educate, instead of berate and turn our backs or noses up on things we don’t understand.

One thing I recalled was a video where a father was holding his son and said he wasn’t a fan of the Ice Bucket Challenge but rather he wanted to challenge men to be fathers to their children. I thought this was clever and another important issue for me personally. I totally agree that Men need to be in their children’s lives…..and that they should dump icy water over their heads.

So as of now, I haven’t done the Challenge yet, but I will. I do hope that everyone who does it donates as it is not necessarily tracked. Either way, it’s raised awareness and will continue to do so.

So my challenge is this, before you go negative (which is something we all say we hate) educate yourself and realize this is just about helping people and if you don’t agree with it, DON’T DUMP ICE WATER ON YOUR HEAD, more importantly, STOP WATCHING THE VIDEOS!

Those with ALS are having a tough time (that’s an understatement) and it only gets worse with time and it will ultimately take their life. Right now they’re in the spotlight for the first time I can remember. Do they care if I dump water on my head? Probably not. They do care that money and awareness is being raised to help them.

It is great that the NFL is involved.  The Challenge is also spread to other major league sports and celebrities as well.  For an awesome cause.  Yesterday I saw a video of Charlie Sheen dumping a bucket of money on his head that he is to donate.  Awesome, as it is very important to know that the disease does not discriminate by race, color, class; it is something that can come after anyone.

Guys, this is so important,

• The cost to develop a new drug to treat ALS is $1-2 Billion.

• There are as many as 30,000 Americans currently affected by the disease.

• People may live from 5-20 years with the disease (this is much longer than my Mom had and their quality of life is much better today with the technology that is now available because of people caring about dumping water on their heads).

The bottom line is we have to take care of each other and whatever our “First World Problems” are, compassion, empathy and love are paramount.

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2 Responses to Why We Care About The Ice Bucket Challenge

  1. Diane Krisman says:

    Well written Ken! Your compassion, empathy, and love are so evident throughout this piece. Thank you for writing this! Your Mom is smiling down!
    Diane

  2. Pamela Knutowski says:

    Diane and Ken and families, you have given me a very good reason to do the challenge!!

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