When I started seeing people, famous or otherwise, taking part in the ALS Challenge. I thought it was a new social media fad, and in a sense, it still is. I went from some people to all kinds of people with all different understandings of the disease. A few things I noticed about this particular fad. It made people feel good (in an emotional way, freezing cold water is never pleasant). They felt they were taking part in something large and beyond their minimal contribution. They got to participate in at least a lazy activism. What stuck out most was how many didn’t mention the detriment of ALS and the difficulties it causes families. It seemed the “feel good” was more important that the point of the challenge. Ultimately, I felt I was watching a national vainglory.
I knew, because the nature of my public life, I would eventually get challenged, thankfully it was by a parishioner. I couldn’t not respond, if not for respect to New Orleans hero Steve Gleason, who has publicly struggled with the disease for the last few years. So I wanted to do something different and helpful. Certainly, many fellow Catholics have mentioned Fr. Michael Duffy’s post of the moral difficulties with the challenge. I felt the needed to share that. It seemed to me that it would be most effective to enter into a small piece of solidarity with our brothers and sisters who suffer from this disease. It came to me to take away, even for a brief time, my ability to move, to be tied to a chair, which do to me never having older brothers, has never happened before. The gag was that I was going to donate but not do the childish Ice Bucket thing.
I saw the Ice Bucket pour as childish. Why would that be that way to create awareness for ALS? It is quite comical ice water buckets and humans because so many things can go wrong (and go wrong they do). The deeper I thought the only answer I could find was in the fact that the cold war freezes your nerves even for a few seconds giving the sensation, or lack thereof, that ALS patients experience, so dousing yourself with frigid water is a small act of solidarity. Being tied to my chair, I could not move after being poured on with primarily ice (the facilities manager would have it no other way). So I was stuck unable to move. And I’m not going to lie, I was afraid. I was afraid I would freeze to death in Southern Louisiana on mid-August morning. You can notice that I yell untie out of fear. Only if I moved and got my blood flowing would I be able to recover from that frozen bath.
Later this morning, as I took a warm shower that moment came back to me. That’s what ALS patients feel all the time. As much as they would want to get up and move, they can’t. I could get up, be untied, walk around, complain about the chill by talking and laughing my ridiculous laugh. Men and women like, Steve Gleason cannot. It left me very grateful for the gift that I have to still have full neural control of my muscles (except when I trip).
Lastly, I invite you, dear reader, to pray for those who are suffering with ALS. I can image how easy it would be to lose hope, especially in a society that values so highly productivity. They are in need of our prayers and need of the grace to unite the physical and emotional suffering to the cross. Pray also for their families who have to undergo a large lifestyle change to take care of their loved one.