Over the past couple weeks, millions of people have been introduced, through amusing videos of their friends shrieking as they dump buckets of ice water over their heads, to a nasty villain called ALS. For many, this was the first time they heard of the disease (and I’d be willing to bet that some still don’t know what it is, despite the number of times they clicked on those videos).
ALS is one of those diseases we don’t hear much about. It doesn’t get much press, despite the fact that it’s debilitating to patients and devastating to the families that go through it with them.
I didn’t know ALS existed until the summer between my freshman and sophomore years of college, when one of my campers from church camp sent me a letter, telling me that her father, Joe, had been diagnosed with the disease. I read the fear between the lines of her junior high age handwriting. He would eventually need a wheelchair. They were moving to a house that would better facilitate his needs. It was bad.
I was stuck at camp (I was working on staff that summer, as well as counseling) with no internet, no reference books, no doctors to question about this disease I’d never heard of. One of this camper’s relatives, a camp dean I knew well, happened to be at camp that week, so when I mentioned wanting to know more about what the family would face, he sat myself and another counselor (a good friend of both mine and our camper’s) down at a table in the dining hall and explained it.
It was fatal. It was fast (Joe’s diagnosis was 6 months to 2 years). It was just about the scariest thing I’d ever heard of: patients gradually lose motor function until they are no longer able to move any part of their bodies except their eyes. It usually starts in the arms or legs, confining patients to a wheelchair, unable to even lift a hand to turn the page of a book. Swallowing and speaking become difficult. Then even breathing becomes impossible.
That was what this family I had grown to love was facing.
Our conversation took place quite late at night, so after he’d answered all our questions, the dean went back to his cabin. My friend/co-counselor and I sat there for I don’t know how long, staring at each other and processing what we’d just heard.
Then we cried. For our camper, who was the sweetest kid you’d ever meet, her two older brothers (also campers/friends of ours) and their parents. Their dad was in his early 40s, although in 1998, at age nineteen, the impact of age 43 didn’t hit me with the pow factor it does now, given that my husband turned 43 on his last birthday.
If you’ve never been a camp counselor, you have no idea how tightly those campers can wrap you around their little fingers. Sure, there are the ones whose canteen cards you want to run through the shredder . . . or whose stuffed animals you want to punt into the woods. But there are also the ones who melt your heart, the ones you’d give your last yard of gimp for. Joe’s three kids were give-your-last-yard-of-gimp-for campers.
At first, I was in denial. This could not happen to them. It wasn’t fair, and God and I had several arguments about it. Well, I guess I argued. He listened. I prayed for the whole family every night. After all, ALS is fatal, but God is bigger than ALS. I prayed for a miracle. I begged for it. I bargained for it. Cried for it.
It didn’t happen.
I experienced ALS through letters from my camper, visits to Joe’s home, and updates from Joe’s sister-in-law. At first, I was just sad for my camper, sad that her wonderful family had to go through this.
But something happened during the next four and a half years—Joe became my friend. He had first come into my life in the form of just one of many parents dropping their kids and their kids’ friends off at camp the year I was a 16-year-old rookie counselor.
As I got to know the family better over the years (I went on to later attend college about an hour’s drive from where they lived) I got to hear Joe’s great camp stories (oh, boy, some were doozies!) and sit next to him and his wife at his daughter’s sporting and choral activities. I came to know the man referred to as “my dad” in all those letters and emails.
One day, I was sitting at their family’s kitchen table with Joe, his wife, their daughter/my camper, and my husband, and the subject of cribbage came up. It was one of their family’s favorite games, and my husband knew how to play as well. They needed four to play partners), but I’d never played before. Joe was a great cribbage player, but his arm muscles had deteriorated to the point that he could no longer lift the cards.
So Joe and I became a team. I held the cards, and he told me what to play, explaining why each time. After a couple games, I had caught on, so I started pointing at cards I thought we should play. He would give me an affirmative nod or a rethink-your-move shake of his head. We had a lovely afternoon of conversation, games, and sharing of camp stories, old and new.
It was the last time I saw him with the exception of his wake.
ALS took Joe over a decade ago. I’ve been the counselor to hundreds of campers since that hot August day back in 1995 when he and his wife dropped off their daughter and her friend, and every year, as I welcome my campers on the first day of camp and meet their parents, I think about him.
So when videos of people dumping buckets of ice water over their heads in the name of raising awareness for ALS started popping up, my heart swelled. I’ve donated to ALS research several times and have always wanted to participate in an ALS walk, but it just hasn’t worked out schedule-wise. I thought the “ice bucket challenge” was brilliant! I loved seeing people get into it and hearing about how much money the fundraiser was generating.
I clicked on every headline I saw related to the ice bucket challenge, reading what family members of patients thought, which famous person was donating $10, 000, and what the latest research findings on the disease were.
Then they started cropping up—negative comments.
I should have expected it. I’ve been around the internet long enough to know never to read the “comments” on articles related to subjects I care about. I don’t know why I started doing so on the ice bucket articles. I should have known better. I guess I thought it was such a positive thing, so how could anybody have any qualms?
Now, for the record, I’m not talking about anybody on my own newsfeed or any of my personal Facebook friends. I’m speaking of articles by strangers I’ve read and comments on those articles. All of a sudden, something fun and well-intentioned that’s doing a lot of good things for ALS awareness and funding was being criticized and even mocked. I refrained from responding to any of them, but they still burn me up:
*Those dumb videos are clogging up my newsfeed. It’s inconvenient having to scroll past all of them.*
Inconvenient? Really? It’s inconvenient?
Inconvenient is not being able to drive your own kid to camp because your arm doesn’t have enough strength to work the car’s manual gear shift.
Inconvenient is having to use a voice recognition program to write a letter to your kids at camp.
Inconvenient is having to drink everything with a straw because you can’t hold a glass.
Inconvenient is having to use a spring seat to get up out of your chair.
Inconvenient . . . well, I could go on, but I won’t.
I really feel your pain at having to click past those ALS videos. Whatever do you do with all posts about “Which 80’s Song Should Be Your Theme?” and “Please vote for my cousin’s husband’s ex-mother-in-law’s dog groomer’s dog to win best haircut. You can vote 50 times a day!”?
*Everyone’s just jumping on the bandwagon.*
Good! This is a bandwagon that needs to be jumped on. Jump on it! Jump on it if you have a family member who battled ALS. Jump on it if you learned what ALS is five minutes ago. Jump on it if you just like watching people pour ice water over their heads. The more people who jump on this bandwagon, the more money is raised, the closer we’ll be to a cure or more effective treatment.
*But it’s not working anyway because people are just dumping water over their heads to avoid having to donate, which totally defeats the purpose of a fundraiser.*
So if that’s true, then how do you explain donations to the ALS Foundation being up 1000% compared to this time last year? I’ve seen many people decline to participate in the ice dumping but who pledge to donate and still others who do both. Sure, some people are dumping water and not donating, but there are so many people who are donating that it makes it worth it. It’s not just about money; it’s also about awareness, and this is raising awareness.
*People are just trying to copy celebrities or show off.*
So what? Who cares why people are doing this? Does motive really matter? If someone sees a friend dump ice over their head, learns about ALS, and donates $50 to the cause, does it really matter whether the friend’s motivation to take up the challenge was because a pro athlete they admire did it or because they believe in the cause? The point is, families living with ALS are $50 closer to hope.
*But can you believe how much water this is wasting???*
Um, can you believe how much water Americans waste when they start brushing their teeth and then don’t turn the water off until they’re done two minutes later? Or wash their cars once a week just so they look nice and flashy? Or flush the toilet every time they use it? (Whatever happened to if it’s yellow, it’s mellow but if it’s brown, flush it down?)
Or how about waterparks? Every year, we take our kids to a fantastic indoor waterpark, and I must admit I feel guilty standing there as my kids play in gallons and gallons of water, knowing there are kids out there who don’t even have a cup of clean water to drink.
It’s not that I think we should waste water. It’s a precious resource, and we take it for granted in this country. I was reminded of that last week when we turned the water off for 24 hours to remodel our bathroom. But I can think of things that waste water that are a lot more deserving of chastise than raising money to battle a horrid disease.
*It’s not fair to all the other charities that this silly water bucket thing went viral. What about other organizations that rely on donations? Why do you have to do something stupid to get donations?*
Here’s the thing: people don’t know what ALS is, or at least they didn’t until last week. When I mentioned it in the past, most people gave me a blank stare or asked, “What’s that?”
There are the many diseases that everyone is familiar with. I won’t list them because I don’t want anybody to think I’m attacking any specific organizations. Because I’m not. They are all worthy causes. I’m just pointing out that there are many, many diseases we’re asked to donate to all the time. Walk-a-thons, telemarketers, raffles. But have you ever been asked before this month to donate to the ALS Foundation?
There are annual television telethons for research into some diseases. Do people complain that that’s not fair to the other charities? What about all the commercials with famous movie stars asking viewers to contribute to a cause? Is that unfair to the other charities? I’ve never heard anybody complain that it was. (Disclaimer: Maybe they did and I just never read the comments on those posts.)
So keep on dumping that water, folks. It doesn’t matter why. Or better yet, donate here.
Believe me, when I had a bucket of ice water dumped over my head, I wasn’t trying to clog up my friends’ newsfeeds. If I wanted to do that, I would have shared Frozen parodies or the results of the “Which (insert TV show or movie character) are you?” quizzes (because, yes, I enjoy those and take them myself). I’m not jumping on a bandwagon. I’ve been on this bandwagon since 1998 and I’ll stay on it until there’s a cure. I wasn’t trying to imitate a celebrity or waste water. And when I made a monetary donation, I certainly wasn’t trying to rip off any other charity.
I was remembering a cool guy who probably would have taken up this challenge himself. (And then his dog would have scrambled to chew up all the ice that fell on the ground, another great memory I have of spending time with Joe’s family.)
Joe taught me so much: how to play cribbage, how to keep your spunky spirit alive when faced with insurmountable odds, and most importantly, that being a camp counselor isn’t something you do for a week. It’s who you are all 52 weeks of the year. In good times (like rainy day indoor cabin water balloon fights) and bad (including devastating illness).
Joe, thank you. This bucket of ice water’s for you.
Jenifer Brady is a mom, photographer, and the author of the Abby’s Camp Days series, set at the fictional Camp Spirit. Her current work-in-progress is a YA fantasy trilogy. Find out more about her books at JeniferBrady.com or her Amazon Central author page.