It has been said that one is the loneliest number. In contrast, 1,000 can feel isolating, and zero can be as haunting as a deserted island.
Just a few years ago, the numbers Peter Frates cared about were associated with RBIs, batting averages, or his Boston College captain’s jersey. Today, he wakes up as the one guy in his wheelchair, chipping away at the 1,000 days expected to remain in his lifetime, all because of a disease with zero known cures.
Peter has amyotrophic lateral sclerosis, or ALS, the disease that killed the New York Yankees’ Lou Gehrig. While Peter once hit a home run out of Fenway Park during a college game, today he uses eye-tracking technology to “speak” through a computer. While he once served himself Gatorade, today he “eats” through a feeding tube.
In just over two years, he has gone from a walking, talking, boy next door to a paralyzed, dysarthric, terminal patient.
ALS is a degenerative neural disease that kills the brain’s ability to initiate and control muscle movement. Approximately 5,600 Americans are diagnosed each year, across all demographics. There is no known cause, and there is no known treatment for halting the disease’s progress.
Before last week, I could not have identified anyone who had had ALS, other than Lou Gehrig. I could not have confidently told you whether it was different from multiple sclerosis, much less how. I had no idea degenerative was a nice way to say “ultimately paralyzing.”
I have finally started to learn.
Last week, I saw my sister tweet about an Ice Bucket Challenge. Then I saw my brother-in-law dousing himself with a bucket of icy water on YouTube. Then, on Facebook, I saw my old neighbor doing the same thing with her pot for cooking pasta.
The rules are simple. State that you’re doing the challenge to #strikeoutALS, nominate a handful of family and friends to do the same, and post a video of yourself getting soaking wet on social media. Hopefully post-upload, you’ll make a donation to the Pete Frates #3 Fund, or to one of the hospitals or nonprofits he links to on his website, petefrates.com/about_ALS.html.
The Ice Bucket Challenge is a viral phenomenon. In a five-minute span, I read about participation by a Boston Bruin and a New England Patriot, and then I watched the mother of our babysitter get doused. I hate having my picture taken, but just a few days ago my shocked husband videotaped me coaching our kids through the steps alongside me.
Skeptics question whether the public’s reaction is simply an excuse for more self-promotion. There’s a lot of laughter in the videos, a lot of “likes” and “favorites.” As if we’re supposed to be having fun here. As if being chilly for a few seconds makes us capable of empathizing with someone who can’t click a mouse. As if the video is the point.
True, social media has been known to take something pure (friendship, love, opinions) and torture it into something vacuous and juvenile. And true, ALS is not going be cured by a busy day on Facebook.
But there is something valuable to be gained from attention, however fleeting. There is something universal that can be attributed to matured perspective. There is something beautiful about a community being created by strangers around a stranger.
ALS donations are up 10 percent. A woman who had ice water spilled down her back by a stumbling waiter laughed it off as her chance to participate in the ice bucket challenge. Peter Frates is being bombarded by evidence that people are paying attention, even if they’re not paying money.
I hope people care enough to donate, if they can. But compassion exists even when it does not provoke a monetary exchange, and even if it does not spark a lifelong mission. For a few minutes on several days of several weeks of this year, more people thought about Peter Frates than they did last year. Whenever he needs to be reminded of that, his eyes just need to tell his Internet browser where to go.
I hope he brings us with him. Whatever its flaws, social media promises we’ll be there.