I’ve always been hugely supportive of charitable initiatives and fundraising for several important causes that have impacted our own family, so when the ALS Ice Bucket Challenges (#ALSIceBucketChallenge) started showing up in my feed last week, I needed and wanted to learn more about both the disease and the fundraising plans.
As more and more videos filled by Facebook feed, I wondered if these people were really donating to this important cause or just jumping in on some viral social fun. The Ice Bucket Challenge debate has been going on for several weeks now and I can actually see both sides of the issues. While African children struggle to have clean drinking water, we have chosen to waste thousands of buckets. I agree that it just doesn’t make sense. On the other hand, after a bit of reading and research, I was pleased to see that the challenge has in fact produced unprecedented fundraising results and will really be able to make a difference in supporting more research. When I thought about whether I would participate, I decided that ultimately the pros outweighed the cons. I felt comfortable knowing that the money that our family donated, would have not have been donated otherwise, had we all not been challenged. I love that my kids learned about a disease that has affected several families that they know and that they each contributed some money towards our family donation. I’ve watched videos like this incredible video of Anthony and read blogs like Charlie’s, that has allowed me to learn more about ALS. This is a good thing, right?
Participating in the Ice Bucket Challenge is your choice, free of judgement. You may have seen my own Ice Bucket video on social media last week and noticed that I nominated my friend Ally to do the same. When I challenged Ally, I didn’t know that her mother-in-law had died as a result of this relentless disease. I’m so proud of her for sharing her reasons for declining, as well as her story of watching someone slip away from ALS. It may help you form your own decision about participating or not.
Here is Ally’s story-
Our family lost my mother in law, the kids’ Nana, to ALS. She was 65 years old and it was literally a year between diagnosis and death. It was a hell of a year.
ALS is a relentless, fast-moving, terrifying disease that held our family in its throes until it finally took her life. This isn’t my story, of course. ALS didn’t happen to me – but I can tell you what it stole from a woman who had just begun to enjoy retirement, her grandkids, and plans to travel.
First, it stole her voice. This was a woman who called her kids regularly to chat, and almost always called back after the last hang up because she had ‘one more thing to tell us’. Her first symptoms were slurred speech, and the quick downhill road meant that she could only write to communicate. The pain in her eyes and frustration at not being able to talk was hard to watch. It stole a huge part of her personality when she lost her ability to speak. We would have given a lot to hear her ‘advice’ one more time.
It stole her friends. There were friends that stopped coming to visit, unable to cope with seeing their friend attached to a feeding tube, unable to speak to them, communicating only with pen and paper.
It stole her dignity. As a person loses muscular control, simple bodily functions become difficult if not impossible. It meant Nana no longer could travel to visit family even a 20 minute drive away. She became trapped in four walls, as reliant on others as a newborn.
It stole her ambition. Her will to live at the end – of course it was gone. There was no life left to live, nothing to hope for or to look forward to. While her mind was strong, her body had betrayed her, and she had to let go. As hard as it was, after the year we saw her go through, it honestly was a relief to see her suffering end.
To our family, reminders of ALS are reminders of heartbreak, of a terrible year where it was all we could do to keep up with and try to adjust to the ever-changing realities of this disease. With every empty bucket of ice dumped it also serves as a reminder of a life not lived and an emptiness in our lives of what could have been. And while it’s great to see that the #icebucketchallenge has raised awareness and money (incredible gains over previous years for which I’m so glad), for me, I’m going to take a different challenge.
I’ll be doing the NoIceBucketChallenge instead – read here for more, or just follow these simple steps (credit to the author Will Oremus):
1. Do not fetch a bucket, fill it with ice, or dump it on your head.
2. Do not film yourself or post anything on social media.
3. Just donate the damn money, whether to the ALS Association or to some other charity of your choice. And if it’s an organization you really believe in, feel free to politely encourage your friends and family to do the same.
Guest post by my friend, Ally Cooper. I’m so proud of her courage to write this and her passion to tell an important story about ALS.