My family and I are all on one hotel bed watching a summer storm in Lake Tahoe. Rain is beating across the windows, and, from somewhere distant in the mountains, we can hear thunder. Scarlett is ecstatic. She’s been wanting a storm, and actually cried earlier when we told her it might stay sunny all day, nice enough to swim at the outdoor pool. I think the real reason she wanted the rain was because I mentioned it would be a great time to come inside and drink hot chocolate.
It’s been a lovely few days of vacation so far. We’ve wandered around a couple of resort towns, eaten good food. Scarlett has gone biking and kid-style bungy jumping. And then there are the challenges.
I’m sure there’s something wrong with spending your vacation watching videos of people dumping ice water on their heads, but how can I stop? So many of them are doing it for me. For these two people next to me. Even Scarlett arranged to have someone nominate her, so that she could stand in a hotel bathtub with an actual ice bucket and do the same thing she’s seen other people do for the past week.
The videos are amazing. My family, my friends, people I haven’t seen since high school, are saying the kindest things and then dousing themselves. It’s beautiful. It’s hilarious. And it’s working. There has been major news coverage of the #icebucketchallenge, and hundreds of thousands of dollars raised. Entire sports teams are participating. Actors are posting videos from their showers. Musicians are being nominated and they’re welcoming the challenge. People who didn’t know what ALS was last week know what it is now. I just saw on Twitter that Justin Timberlake accepted the challenge and nominated Jimmy Fallon!
The Director of ALS Therapy Development Institute told the Boston Herald, “We are seeing 10 times the number of online donations every day.” At speed4sarah.com, we’re also seeing an influx of donations, so much, in fact, that we’re now in the top fundraising spot for our Napa bike ride in September.
Apparently, there are some people who take issue with the #icebucketchallenge. For those of you who worry about the waste of water, I offer you this reassurance: Ever since ALS made showering more difficult for me, I have been taking shorter, less frequent showers. So fear not! I’m pretty sure that I alone have offset half of the water loss from these challenges based on the showers I’ve skipped this year.
I’m told I still smell fine by people who would DEFINITELY lie about that sort of thing.
If you’re still concerned about resources, which I can understand, skip a shower or cut one a few minutes short. If we all do this, we’ll easily save more water than the challenges are using, and we’ll still raise awareness of ALS. And if you’re annoyed that your Facebook feed is overrun by the #icebucketchallenge, I say GREAT! You have really awesome friends. They are helping to get the word out about what ALS is by making themselves uncomfortable for a few minutes.
And that is, of course, the whole point. To raise awareness of this specific disease, so that people can begin to understand how it affects the aspects of daily life that most of us have always taken for granted. Like showering. Like standing. Like speaking.
Thank you to Pete Frates and Pat Quinn for coming up with the kind of idea that could go viral and for executing it beautifully. Thank you to everyone who has been filling up my Facebook feed with videos that warm my heart even as they chill your blood. I feel truly supported. This is raising awareness. And this is what will make ALS history.
Now, if you’ll excuse me, I need to go find some hot chocolate. Don’t worry, I won’t be pouring it on anyone.
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Love this, love you, love the ice bucket challenge for so many reasons… certainly not the least of which is to raise awareness for ALS – so that we can start to make a bigger dent in this underfunded disease – so that hopefully we can find a cure – so that Scout can continue to drink hot chocolate with her momma during rain storms in Tahoe (or anywhere for that matter) for years and years to come!
Beautiful Sarah! Our hearts are filled by your words. Stay strong and fight on – together we will Strike Out ALS! Love, Nancy Frates and Team Frate Train
Hello! We have two things in common – first, we both know Rob Becker (I went to grade school with him, since kindergarten!) and second, we are both vacationing in Lake Tahoe this week! I followed Rob’s repost of this blog note as I keep seeing friends doing the ice bucket challenge (I’m thinking they are also friend’s of Rob’s). That’s wonderful! Congratulations! I wanted to give you a little factoid to use should anyone “comment” about wasting water – ask them if they ever heard of something called Fracking…
Good luck!!
What a beautifully written response. My oldest sister is fighting ALS and her symptoms started a mere four months after our dad passed away from what her doctors think was ALS. As we struggle to come to grips with what these disease is doing to her and everyone else fighting it, I can say I am pleased to see awareness of this disease is finally coming to the surface. My sister’s doctors think her illness is genetic but I will cross that bridge when and if I have to, because now I am concentrating on her and spreading knowledge of this horrible disease.
I love reading your blog. I have had ALS for 15 years. I grew up in Vallejo and lived in Truckee.
Thank you
Never give up.
Thanks Melissa!
Thank you, Nancy! Love to all of you.
Thanks, Andrea! Enjoy your vacation!
Thank you, Kerry. Wishing you and your sister the best.
Sharon, thank you! Best to you. 15 years is great to hear.
I am counting all the reenactments of the ice bucket challenge that my kids have done in the last few days as their baths (it’s summer after all). We are doing our part to off set the water waste too. A few buckets contain much less water than the bathtub. And if my kids remember their Uncle Stephen Finger and all the other pALS while they’re saving water it’s a win-win.
It’s wonderful news that along with the increased awareness there is an increase in donations.
Yes, baths! That’s a great way to look at it.
Hi Sarah, I was diagnosed with als in Oct. 2011. It was five days before our son was to be married. I was 53, which at the time I thought was young so I can only imagine how you must have felt. I can relate to so much of your blog and happy to know someone has the same feelings. I never thought I would ever see my grandchildren and I am going to have my second one in a couple weeks. I am so thankful for every day and I am not going to let als take me down.
Thanks for sharing your story,
Jane
Hello Sarah,
How admirable is your perseverance which without, could not have created such amazing heartfelt expressions of who you are as a woman with ALS. It amazes me all the rising to the challenge your friends and family have shown with such honor and enthusiasm!
So, what does it take to get your Uncle Jim, me, your cousin Mara (of course), my daughter Lindsay, and your other cousins Julie and Michael to step up to the ice bucket challenge as well! (Not so hard to do in the 90 + degree Florida weather!) lol.
So, bring it on, cousin!! <3
Thanks Mara! You don’t need a nomination to do the #icebucketchallenge. I have plenty of friends who nominated themselves. Go for it! Love you guys.
Sarah,
I loved reading your post! I met you at the YFALS Corntoss event in SF in June. I was working at the bean bag toss booth. I loved watching Scout dance to the music with her cousin. (I think it was her cousin). She is the cutest girl and has such a positive spirit! I am also impressed with the ice bucket challenge and so happy that it has raised awareness for ALS…..and dollars! Let’s find a cure! My cousin Beth Auffenberg just married Dave Hasebrock who is good friends with Pete Frates. Pete was supposed to be a groomsman in Beth & Dave’s wedding but was unable to make it. You have an amazing attitude Sarah and I am keeping you and your family in my thoughts and prayers. Stay strong!
Thanks Beth!
Jane, thank you so much and congratulations on your second grandchild!
I’m so happy to hear that the #icebucketchallenge is making such a big difference. It’s pretty amazing! It feels momentous, and I loved your video of Rob with Scout refereeing.
15 years is amazing! Our friend Mark passed away a year ago Saturday after bravely battling for 9 years. You are an inspiration.
I remember you well, Sarah, and have you in my heart!
Thank you, Ms. Levine! I have such fond memories of your class.
Perfectly said! I completely agree with all of it- feeling so much love and loving watching all of the videos!