Sunday, May 22, 2016

Definitions on Trinity Sunday

So here's the chain of logic that  I'm puzzling over today:

Suffering > endurance > character > hope. 

The long version, from St. Paul in Romans 5:3-5:

We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us.

It would seem that Paul is passing on some practical life wisdom here, some elevating advice that will get you through the tough spots in life--the surefire path from hard times to being ennobled by hard times.

But it's St. Paul. And life is complicated. So let's define terms.

Suffering. Whatever--if you think you're suffering, I'm not going to argue with you. No need to measure or evaluate or compare my troubles to yours. We're all going to run into suffering. Some of it whacks us upside the head. Some of it we create for ourselves. Some of it is, as Sartre would have it, Other People.

Endurance. The dictionary app is giving me two choices for a definition of endurance: 1) the power to withstand hardship or stress, or 2) a state of surviving, remaining alive. Is endurance a product of a "training effect," the way stressing the body with exercise builds the power to respond better to the next stress? Or is endurance just hanging on, as in, whatever doesn't kill me makes me stronger? I'm inclined to the latter, being, this week, not very fond of exercise. Maybe Paul's point is as simple as without the challenges of suffering, one can't claim endurance.

Character. The first definition that comes to mind for character is "good repute," and this Perverse Lutheran is going to reject that one flat out. Too easy. Honestly, I think that life's challenges and the way you endure them may not make you into the person of "good repute" who everyone looks up to. Why should it? Challenges--suffering--can make you a bad-ass, can make you bitter, can drive you to drink or worse. You may eat more than your share of chocolate ice cream or Cheez-Its. You may end up being hard to be around or living on the margins, in the shadows, or alone. With that character of "good repute" you may end up being an inspiration to others. I'm not knocking that, but inspirational is really about others and their projected hopes and fears. It's not who you are on your own. So let's say instead that character is who you are and what has happened to you and how those things determine the way you live.

How does character turn into hope? This is serious. "Hope does not disappoint us" is written on a yellow post-it note that's been stuck to the bulletin board over my desk for the last two years. When I put it there, the hope, the tangible hope connected to that piece of paper, was that someone would find some diagnosis for my son Kris that would not be ALS. And we were disappointed there. But the post-it with its pencil scrawl remains on the bulletin board.

Earlier today I drew a diagram of this whole suffering-endurance-character-hope thing. There are straight-ahead arrows from each word to the next, but there are also arrows and curves that swoop low or point upward. Anger is at the bottom of an arrow that points downward from endurance, and it just sits there. It's not going away any time soon. There's a fish-hook curve that points from character back to suffering, with the words "Loving this" written in the drain-trap of that J-shaped arrow. That's a subject for another day.

Pointing upward from the word suffering is "because Jesus" and "because this is God's world." I think that the path from character and all of life's experiences into hope lies through Jesus. But I think it's important to say what that means, because, well, St. Paul and the early church were groping with that. And if we're not still doing that today, how can we say we understand. How can we know how to live?

So what is it about Jesus that the path to hope lies there? Well, it lies through a god who created the world but did not leave it on its own when its very nature became troubled and contradictory and evil. The path to hope lies through a god who took human suffering into god's divine nature and through a god who was and is creator, redeemer, sanctifier all in one. So that we can know hope, no matter what the crap of this world does to character, no matter suffering, no matter endurance.

Lord, this stuff is hard to think through. Often I wonder just what it is that makes us struggle with the infinite and with meaning and all of that. Isn't it hard enough just to get through the grocery store and cook dinner? Many of the Trinity Sunday texts are reduced to praise this and praise that, and holy, holy, holy. Awe without explanation.

But yet that post-it note says "hope does not disappoint us." For all its yellow mundaneness, it says the infinite will break through.

Because it already has.

Tuesday, May 10, 2016


May is ALS Awareness Month. Today was ALS Advocacy Day on Capitol Hill. So I tweeted at my congressional representatives. I changed my profile picture on Facebook to one that says "I asked Congress to support ALS research. Will you?" I've followed  #alsadvocacyday and the Chicago area ALS association chapter all day on Twitter, searching photos and captions for Kris--my 29-year-old son who has ALS and who was in Washington DC doing advocacy visits with congressional staff members today.

Now I'm searching for three words to put in a post or a video to share at, the advocacy site that channels funds to ALS research at the ALS Therapy Development Institute.

Three words, they ask for. Attempts:

This really sucks.
Please bring hope.
Two to five.
Brains locked away.
Beat back despair.
Much too young.
Power wheelchairs rock.

 I am trying to be useful. Trying to bring attention to PALS--patients with ALS who are passionately advocating for research to find a cure or a way to manage the disease--an answer to ALS that likely will come too late to help them, but that may mean an ALS diagnosis is not hopeless in the future.
It is wonderful but true that this effort in itself brings hope to those who suffer now with ALS.

Kris has never shied away from using profanity--at least when hanging out with friends. (He apparently has an off-switch used in his special ed classroom.) He often uses the hashtag #KissMyALS.  The piety of having a fatal disease need not separate one from vulgarity's life force, its anger and defiance. "Kiss My ALS," because I have this disease but I am not this disease--I am still who I always was, only more focused, more certain of what matters.

I struggle to find words to write about all of this. Kris does this memorably, energetically, honestly on his own at his blog Gronks Finding Grace. Anything else you want to know about the disease you can read on any number of websites. When I try to write as Kris's mother, as a family member of someone with ALS, I end up frustrated, tearful, and unable to let the words pour out onto the screen. This is my baby, my sweet son, my friend, someone I esteem, someone who means the universe to me. I am the mom and I am rattled down to my core by the way ALS has interfered with life, the care for life, the joy in living that is there to be passed from one generation to another.

Joy in living--I think of Kris's neon green beer straw, the one visible in his picture today in Tammy Duckworth's office. Presumably there was water in this cup this morning, but by the time I post this, I'm sure he'll be enjoying something more interesting--good beer makes life better. Tomorrow or the next night, I'll talk with him and hear not only about where he went and what he did in DC, but also hear about who he met and his plans for staying in touch with them, giving to and drawing strength from the ALS community. He'll be thanking God for these things on his blog, and so will everyone who knows and loves him.

Three words. More attempts:

Life is good.
Hope is powerful.
I love you.
Hang on, Kris!