the ice-bucket challenge, a little grace, and maybe, a beer

My husband actually has ALS. This disease is not an abstraction for us. It’s something that we live with daily.

Every minute that ticks by can be a minute in which we blessedly forget that the disease is causing some undisclosed indignity; it’s like a hum in the background that we learn to tune out.

Too often every minute has each and every second marked with debilitating pain or some other uncontrollable manifestation of the disease.

In other words, it’s not so much that our days are a crapshoot as the fact that at any given moment in that day we could be looking at lucky sevens or snake eyes.

It’s been a blessing, this awful situation. We appreciate life in a way that we never comprehended before. We appreciate every moment, together, and apart. Because sometimes we have to be apart, and I have to let go and let the man be, you know? It doesn’t do us any good for me to hover. Too much, anyway. I still hover. It’s what wives do.

So we live. We can’t be defined by this disease, and if we do let it define us, him, really — then we’ve let it beat us.

I’ll say this, if I could trade places with my husband, I would. But of course, I can’t, so I live my part in this little dance, and do what I need to do, just as he does what he needs to do. This is where those graces of a Sacramental Marriage come in — the whole in sickness and in health thing — it’s a cliché, right up until it isn’t.

But there are blessings to be found in this. A slower pace, focus on what’s important, an awakened faith. Because let me tell you, we can’t do this alone. God is present to us in every moment, in every breath. Prayer, ours, and the multitude of prayers that we know, just know, are sustaining us — that’s amazing to experience.

And it isn’t just the consolation of feeling God’s love. There’s also the love we have for each other that has been given an opportunity to bloom in a different way — in a place of suffering, which to me, is the most startling. Every sacrifice is an opportunity to love more — whether it’s my husband working with and through his pain to continue to support a household, or the added chores I have that I can do, or not do very well. It’s the moment of humbling reality to ask for help. These are moments when grace slips in. Oftentimes, caught up in our need, we are oblivious to its presence.

Then, there’s another source of love that oftentimes overwhelms us — it comes from our friends — those good people who are praying, who ask what they can do for us. This love is just as necessary for us. It plays out in other ways, through our children, through friends of friends. To my surprise, in places in social media where to be honest, the likelihood of ever meeting these people in person is…well…just unlikely.

These good people are appreciated in ways that perhaps they don’t know.

This Ice-Bucket challenge for ALS awareness is one of those things. We’ve been tagged in more than a few moving tributes, where sincerity and love got punctuated with a hilariously uncomfortable dousing with ice water. I appreciate everyone going through such a freezing experience to declare their love for us. In fact, I’m saving some of those videos because a few of you — I’ll keep your names safe — have some epic reactions.

The challenge, of course, is not really to take the ice shower, but to actually follow through and donate to ALS research.

It’s too bad that’s turned out to be a vehicle for unkind comments fueled, no doubt, by passion. Some folks have pointed out some of that research uses embryonic lines. That certainly brings a little bug into the conversation, especially for those of us who are morally opposed to embryonic lines, no matter how isolated, no matter how old. Other folks have pointed out that there are researchers who use only adult stem lines. In the end, we all must surely heed our consciences. An excellent observation of this dilemma is at Fr. Kyle Sander’s blog, where he comments quite eloquently on his position.

At any rate, I thank those of you who’ve taken the challenge because you want to bring attention to the need for more ALS research. I thank those of you who’ve taken the challenge because you love us and wanted to demonstrate that in a public, fun, and insane manner. I also thank those of you who did it to be trendy and participate in a ridiculous meme (this is me, mocking you. thanks for the laughs).

And if you happen to be our friends, fear frostbite, but feel compelled to show the love, just come over for a beer instead. If you really want to show your love, you could bring the beer.

And donate anyway.

Update: Here’s a link to the John Paul II Medical Research Institute. Read about what they are doing as they seek “a new paradigm in research to address deficiencies in medical research and unmet medical needs.” There’s more to a disease than the physical ailments of the patient.