By Bruce Kramer
Bruce Kramer, a professor at the University of St. Thomas, was diagnosed in 2010 with ALS. He has been sharing his experiences with Morning Edition and on his blog, Dis Ease Diary, from which this commentary is adapted.
Sen. Gary Kubly died Friday. A Lutheran pastor who served in the Minnesota State Senate, he offered to step down after his diagnosis of ALS. But his Senate colleagues urged him to stay on, saying that though his voice was softer from his dis ease, he still offered that rarity in politics — one that sought to reach across difference and find paths that bring lawmakers together.
His work and interest in environmental issues is more than ironic given the current thinking about the environment and ALS, and he agreed to continue on, in spite of how hard it was to function day to day. Sen. Kubly was one of my secret heroes.
Dis ease has introduced me to so many people like Gary Kubly — people I have never met, yet have inspired me through my own dis ease journey. Some of these remarkable souls have made it to television as heroic figures in their own right — Steve Gleason of New Orleans, diagnosed with ALS just a year ago after a decent career in the NFL; Steve Smith, former Penn State and Oakland Raiders running back, now completely paralyzed by his ALS, yet still seeking to educate and advocate about the significant correlation between violent sports and ALS when compared to the general population, seeking to force the boys who run the NFL to acknowledge the neuro-degenerative hazard.
There are others — My Cup Overflows, a Mennonite pastor "flowing through" her recurrent melanoma; the blogger Pink Underbelly — introduced to me by one of my former students and recovering from breast cancer with an attitude that shakes a finger in the face of dis ease. Jason Becker was diagnosed at the age of 20. A musician who continues to compose using a system of communication devised by his father, he is now 42 years old and the subject of an upcoming documentary. And I have mentioned Kathy Hult in this blog — she has raised millions for ALS research.
I cannot say enough about Persevering, an engineer diagnosed with ALS, who has turned his prodigious talents toward the reanalysis of our assumptions concerning the dis ease. I have watched the ALS Research Glitterati hesitate and acknowledge that the numbers don't actually add up, because of his work.
These remarkably ordinary humans are extraordinarily accomplished, in spite of how their dis ease lines their lives up like dominoes ready to fall in a despairingly ordinary pattern. To rise to amazing accomplishment, when all around you encourages sub par performance, is heroic.
Many have told me that they look forward to these weekly forays of my soul, because they offer a perspective on their own dis ease moments. I am glad. If there is something that gives friends strength as I weaken with the ongoing "progress" of ALS, well, that only seems rightly symmetrical to me. And I have to admit that my symbolic step gains an equally symbolic small spring to it when someone contacts me because I was able to turn a phrase in a way that energized their understanding of their own journey.
But when it really comes down to it, a primary source of my own strength to cope is the unsung heroes of extraordinary accomplishment I have named above. Each one of them gets the horror of this whole thing. They get that negotiating dis ease is almost totally an attitude thing. They understand that each day is not a given, but something that has to be carefully planned in order to not tip too far along the way of despair, frustration, fatigue. They get angry, and they cry, and they laugh at how ridiculous some of this seems, and most of all, I don't have to explain one damn thing to them.
They just get it.
When I look at these incredible souls, they all have something in common. Underlying their right attitudes are friends, parents, brothers and sisters, sons and daughters, people who really care about them, and whom they can care about right back. And these friends, parents, brothers and sisters, sons and daughters, people who really care, keep my heroes grounded in this world. How does this work? I can give you three examples.
About once a month, a posse of my former choir members comes to downtown Minneapolis and takes over my conference room to break bread, laugh, catch up, hug, and just to feel the love. We started out in a restaurant, but decided it was too expensive, and this space is quieter, more easily attended, more easily shared. I love the choir posse. Without an overt prayer, they bring psalms of joy whenever we get together.
Then there are my kids and their incredible partners. On Friday, we took the leap out into the great, grubby masses at the Varsity Theater to hear the Punch Brothers in concert. It was extraordinary!
Even more extraordinary was the way that Ev and Kirsten and Athena and Dave and Jon flanked my wheelchair, clearing drunken concertgoers out of the way and reassuring me that this sea of unwashed humanity would be parted and they would get me through.
I anticipate anxiety in the crowd experience, but they might as well have just linked arms over and under and marched phalanx-like, clearing a path like a Minnesota snow thrower. Kirsten even got in the face of a guy who just couldn't seem to figure out that every time he spilled his beer it was on my shoe. God, they fill my soul.
And then there is my best friend, lover, now caretaker, incredible partner Ev. She just won't let me be less than I am. She encourages, supports, cries, holds, sees the humor, perceives the pain, and keeps us on the right path. And somehow she accomplishes all of this with graceful beauty and wisdom, and gratefulness that we have awakened to another day to explore the next big adventure.
See the theme here?
A minister friend of mine, lost to me from long ago, but still very much present in my psyche, got in touch with me out of the blue this week to wish me happy birthday. One of his observations really resonated with me. He said, "I don't know, I'm 70, but when I think about it, I'm still pretty pissed at God for the way this world works."
Me too, but then I think about my heroes who, in spite of the next big thing to go wrong, continue to find their way down their uniquely human dis ease paths. And I've really come to the conclusion that part of it is pain control, and all of it is realizing that we humans need to stay in the presence of people, and actually, that is how God made the world to work — if you believe that way.
What I really mean is that there are social consequences of dis ease. When we feel that we are truly alone, walking the path without anyone beside us, when we feel that raw sense of solitary isolation, cut off from the world and worse, cut off from the humanity that could humanize this whole experience, it is impossible not to despair. My heroes all have posses, friends, parents, brothers and sisters, sons and daughters, people who show them the love. And yes, they love right back.
Gary Kubly loved enough to stay in service until the day he died. Steve Gleason says it is all about staying connected. My Cup Overflows states that it is about letting go of the anger, and just letting the treatment do its job. And I read them, and I cry, and I laugh, and I remain thankful that so many have chosen to stay the course with me thus far.
They are all my heroes.