It started with a phone call to plan our vacation. My mom got off the phone, turned to me, and said “Something isn’t right with Faye.” Puzzled, I asked what was wrong, and she voiced concern that Faye was slurring her words. We both speculated, worrying Faye had experienced a stroke or some other issue.
When we actually went on vacation, it was more prominent. There was no doubting it, Faye was slurring, and her hands were a bit tense. I think we all had an idea of it, but none of us wanted to say the words, that acronym. After all, we’d already lost at least one family member to the horrible illness, and the thought of another going through the same horrible, trapped fate was terrifying.
A diagnosis confirmed it… Faye had ALS, Amyotrophic lateral sclerosis. It meant that, over the coming months, she’d lose her ability to speak, her ability to eat, her ability to move normally. She’d resort to writing what she needed to say, and eventually, she’d lose the ability to do that, as well. If someone baked cookies, she’d be unable to enjoy them. If she was craving a bagel, she couldn’t eat it. Her mind would function, but she couldn’t turn those thoughts into spoken words. She would literally become a prisoner in her own failing body before eventually succumbing to the disease.
Faye was at least the second person to be affected by ALS in our family. My great grandmother Lena also had ALS. Some types of ALS are more prevalent within a family, people predisposed to it based on genetics. Having more than one person in our family diagnosed was not a positive sign.
ALS is relatively unknown and rather underfunded. Unless you call it Lou Gehrig’s Disease, a lot of people don’t even know what you’re referring to. Essentially, people either have no idea what ALS is, or they know the horror of it because they’ve seen it or been affected by it. There’s very little in-between.
Or at least, there was until around July 29, when the ALS ice bucket challenge began. People around the country, and soon, the world, started dumping buckets of cold water on their heads to raise awareness for this terrifying condition. More and more people joined in. Celebrities started participating. Politicians did it. Kids did it.
Searches for ALS on Google increased greatly. Donations did, also, with people rushing to fund research for ALS. People finally were finding out what ALS was and why it needed to be funded. A lot of us who had seen ALS firsthand were relieved, excited, and ready to participate.
And then, like any viral sensation on the internet, the haters started in on the ALS ice bucket challenge.
“ALS kills fewer people than (insert cause here) so it isn’t worth donating to.” Great. Donate to another cause. Or donate to ALS and another cause. But just because it doesn’t kill as many people, or even affect as many people, it doesn’t make it less valid of a cause. While you may not be intending harm by saying this, to someone who has experienced it and seen it first hand, you’re basically saying “Other loss is more important than your loss because it affects more people.” To me, their loss is significant, and so is mine. Let me donate to the cause I support, and you can do what you please with your time and money.
“The Ice Bucket Challenge is a waste of water.” Only if you let it be a waste of water when you participate. If you’re concerned about wasting water, there are several options. 1) Donate, but don’t dump water. A lot of people have done it this way. 2) Do what the awesome Peterson Farm Brothers did in their Ice Bucket Challenge, and water your crops while you’re at it. 3) Do what Matt Damon did and use toilet water. 4) Do what one of my Facebook friends did and make your donation to ALS research, then instead of dumping water on your head, donate water bottles to a local homeless shelter. Her family made their ALS donations, then donated 30 cases of water to the homeless. It’s only a waste of water if you’re letting it be one, and you can participate while getting creative if you choose to.
“ALS organizations use their money for embryonic stem cell research, and I’m not okay with that.” Great. Neither am I. You can donate to another ALS research charity that doesn’t use their funds for embryonic stem cell use. One good option is the MSCTC, which only uses adult stem cells, with another being at the Mayo Clinic, also using adult stem cells. Christian bioethicist David Prentice recommends both of these charities as good options. Additionally, 501(c)3 guidelines say that you can specify your donation anywhere not be used to fund embryonic stem cell research. The organization has to comply and use your funds in other ways, or they’ll risk losing their tax-exempt status. Sidenote: I do not recommend donating to JPII Medical Institute, where funds are not going to research ALS, but instead, being used to build a clean room and lease laboratory space. There is no confirmation of intention to use these funds for ALS-specific research. Finally, you’ll want to know that Carrie Munk from ALSA says that they primarily also fund Adult Stem Cell research, and that, while the ALSA has one program using embryonic stem cells, it’s funded by one donor who very specifically is dedicated to that line of research.
“ALSA tests on animals.” Yes, The ALSA does test on animals. Significant advances have been made because of this fact. However, unlike many believe (possibly thanks to Pamela Anderson), the ALSA doesn’t do primate studies, and if you’d like your funds not to go towards animal testing, you can specify that when you make your donation, and they will honor it.
“I cannot do it because I work for the government.” There are some government agencies that are saying that participants cannot do it by identifying themselves as part of that organization (specifically military). That said, most military members are able to participate as long as they’re not doing so while in uniform or identifying themselves by their military status. Additionally, there are some government officials who are strictly barred from participating in the ice bucket challenge. That said, none of those people are barred from donating their money where they’d like, including to ALS research. So, just because you can’t dump water on your head if you work in certain fields, well, you can still put your money where your mouth is and give a little bit.
“I don’t have money to donate.” If you absolutely cannot donate money to ALS research, and if you don’t have the money for ice, that’s okay. Participate in the challenge. Film yourself dumping water on your head. And then, explain what ALS is and why research for ALS is important. Beyond the donations, the Ice Bucket Challenge is a great way to help more people learn about ALS. While obviously, donations are very beneficial and I love that people are choosing to donate, I also recognize that some people can’t. Awareness is also important, and I think that people can participate even without donating.
To be honest, with all of the hate that the Ice Bucket Challenge is getting, I simply have yet to find a single valid reason why someone could not find some way to participate at all. Perhaps it’s because the cause is very personal to me, but I see that a lot of the reasons not to participate really don’t make sense when you take the time to see what options are out there.
Obviously, I can’t force anyone’s hand in doing the ice bucket challenge, and I wouldn’t want to. I want people to participate because they want to participate. But I also don’t want some of the louder voices that are shouting why participation isn’t a good idea to shout louder than the truth behind those statements– that to every side that says don’t do it, there are still ways you can do it and reasons you should do it.
If nothing else, do a little bit of reading on what ALS is like, what it feels like, how it affects people. Think about the experience of being absolutely trapped in your own body. And then decide whether or not you feel like it’s worth putting a few dollars towards or dumping water on your head. To me, the ALS ice bucket challenge is an opportunity. And if you don’t plan on participating, please don’t tell me how bored you are of it. I sit silently during Movember, even though the cause isn’t as relevant in my life. I watch other charities, diseases, and causes get their time in the spotlight. For once, ALS is in the spotlight. It’s got the attention of the world, and more people than ever now know what ALS is and what it’s effects are.
I implore you… let ALS have this spotlight, just for this little bit. It won’t last forever, and you’ll be back to browsing videos of kids taking selfies and news about the atrocities going on in the world. But for now, let ALS have it, even if you don’t plan on joining in on the fun.
And trust me… participating can be pretty darn fun.
With that, I’d like to issue one final challenge. Readers, I challenge each and every one of you to participate in the ALS Ice Bucket Challenge. Whether you participate by donating, but dumping water on your head, or in any other capacity, I’m nominating you.
Have you done the ice bucket challenge? Link up your video in the comments below! Not participating? I’d love to hear why!