The Hero

Senator 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. Senator Kubly was one of my secret heroes.

Dis ease has introduced me to so many people like Gary Kubly—people that 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 of you have told me that you look forward to these weekly forays of my soul, because they offer you a perspective on your 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 that really care about them, and that they can care about right back. And these friends, parents, brothers and sisters, sons and daughters, people that 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 that 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.

You are all my heroes.

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10 thoughts on “The Hero

  1. Thank you for lifting Ev up today. She is moving down this path you share with grace and strength, love and wisdom. I’m thinking maybe a Lunch with Ev Series would be a good idea too.

  2. Bruce, Today you brought to mind one of my favorite quotes:
    “The foundation of power is the esteem of our comrades.”
    You are indeed a power lifted by the esteem of zillions of
    your comrades, and it is a treat and a pleasure to be one
    of them. Love, BW

  3. Bruce, I thank you for sharing your feelings and for your example of courage and love. You are indeed one of my heroes.

  4. Wow, thanks. I’m quite honored to be mentioned in this space. You’re right, we’ve never met, but we are connected by dis ease, and as much as I detest the circumstances, I’m happy to know you. I’ll keep shaking my finger if you’ll keep writing so powerfully from the heart. Deal?

  5. Well said as always Bruce 🙂

    I so wish that my mom could “get that negotiating dis ease is almost totally an attitude thing.” Sadly her variant of dis ease means that you no longer “get” stuff like this that could pull you through. Anyway some days C and I think we see steps forward. Other days they go the other way.

    Another key difficulty my mom faces is she does not have an Ev who “just won’t let her be less than she is”. C comes damned close, but she’s not my dad (and of course neither am I).

  6. Hi Bruce

    Thank you for another thoughtful posting. I keep forwarding them on to the Gruys boys, my husband and his brothers, in hopes they will someday understand they don’t need to be stranded alone on an emotional island. There are people that really care about them and it is ok, even wonderful, that they can care right back.

  7. Hello Dr. Kramer,

    Thank you for sharing in your journey with all of us. You are indeed a brave and heroic soul. Blessings to you.
    I am indebted to your leadership at St. Thomas and wish you much strength, continued wisdom and the wonderful humor you face this challenge. Those who laugh,… last.

  8. Well, here we are….joined by pen or click on the computer or your choice…I couldn’t be more touched that your words resonated with my husband, Dx with ALS 2/09, and me—-please continue to write, although I state…. ‘say no more’ we in fact get it. The spirit has joined our souls not only in this journey, but in sharing the celebration of the day as we journey on. Thank you for writing!

  9. Dear Bruce,
    I remember your advice to “hear” the students’ “stories” as we read our their proposals during that summer course a long time ago. I’ve never forgotten that lesson, and, as I read your blog, I realize you, too, are sharing your wondrous story and I do hear it. Thank you for that and for all you’ve taught me.
    Karen

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