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.


The Holy Spirit or, In Praise of Kathy Hult

In the past few months, I have explored spirituality in a way that admittedly pulled its spiritual punches. I have talked about the human spirit, the spirit of courage, the spirituality that exists in a beautiful day. I have explored the spirituality of ALS, and I have explored the lack of spirituality in a culture that seems to believe in its own immortality. I guess part of the reason for my more descriptive narrative is that I have lived among so many different religious traditions in my life, and to proclaim THE way seems mostly counterproductive. After all, who am I to argue the relative virtues of the eight-fold path versus the way of Islam versus wrestling with God versus walking the extra mile versus the double-blind placebo controlled study of High Science? I have witnessed the subtleties and exaggerations, vices and virtues of all these approaches, and I can honestly say that if I don’t get too hung up on the nuances of language, it is possible to see holy spirit working in each of them—no matter what the frame of reference. What I have been circling around is the fact that dis ease is a holy endeavor, and if you cannot perceive the spirit that walks in a chemo drip or a slow loss of muscular function, then you are missing the great companionship that walks along beside you.

Next week in Minneapolis is the Walk to Defeat ALS, and I am sorry to say that with all of the things going on in our lives, I haven’t put a team together to support it. I have always liked to do things like the Walk—just a little over a year ago I rode the MS 150. I love the symbolism of walking to support the cause, since so many of us PALS cannot get around without some assistance. I love the fact that it will raise money for both research and support. What I really love about events like this though is the spirit that walks along with the participants. I remember last year on the MS 150, there was a point where Jon and Kirsten and Katie and I were just grooving in an 18-19 mph train that, each time it started to falter, another of us would move to the front and take the lead. Truly, the road rose to meet us, and the wind was at our backs. If this isn’t holy, then I don’t know what is. In the backs of our minds were the people that we were riding for—people with MS that we knew. So I feel a little guilty not putting together a group for the Walk. And of course the MS Society is a big group with a lot of resources and public face. The Walk does not get a lot of publicity, no local television stations have picked it up, there isn’t a celebrity that will be at the starting line, well unless you count the exceptional Kathy Hult.

You are probably wondering who Kathy is, and I have to admit that I didn’t have a clue about her until I started researching the Walk to Defeat ALS. You see, Kathy Hult is a PALS, and she was instrumental in the founding of the Minneapolis Walk. In the last eleven years, her efforts have raised over four million dollars for the ALS Association. When she started, she walked with a cane and though her dis ease progression is slower than most, she is now in a power wheelchair with a dog helper. Not only has she worked for ALS, she has also worked for the group that helped her to get a dog companion–Helping Paws. She was just honored locally as one of “Eleven Who Care,” and no one deserves the honor more. Here is a woman that, no matter what you believe, shows a spirit that is truly caring.

It is so tempting to write the “when life gives you lemons, make lemonade” line at this point. Kathy Hult is doing what I think all of us hope that we would do in the face of overwhelming difficulty, and she certainly personifies the lemonade of humanity. I love people like her. Inspirational, strong, down to earth, Kathy Hult has worked with a spirit that many would call holy. She has made the best of a bad situation, and I really admire her for it.

At the same time, I cannot help but think about the things that no television special will ever relate. For Kathy to get ready to go out, for her to get dressed and ready for the day, takes enormous effort. I know this from personal experience. Just the act of trying to get legs through pants and socks on feet, just brushing your teeth and washing your hair, requires enormous energy and time to rest from the effort. And this is the thing that I think is important for us to remember. It is easy to put people on a pedestal when they show us the kind of courage that Kathy Hult shows. But make no mistake about it, the courage is not in organizing the Walk, it is in getting out among people even though you know what it is going to take, just to look a little less like dis ease is your constant companion. It is the willpower that she shows by getting up and engaging in activities that will help other people. This is no lemons to lemonade story. It is praise for hard work, perseverance and gumption. It is praise for a spirit that you are either open to, or you shut out. In the ALS world, a walk with the holy spirit is about all you get, and you can choose to walk with her, or you can stay inside. Kathy has chosen to step out with the spirit at her side, and courage in her gut.

Ben Harper, one of my favorite preachers, sings, “When my legs no longer carry, and the warm wind chills my bones, I will reach for Mother Mary, and I shall not walk alone.” And here is the point. There is no place in time when we are ever really alone. It may feel like it. It may feel like we are walking in utter isolation. But if you just listen to melodies on the breeze, get in a bike train, gaze into the eyes of your own true love or wrestle with God, you are with a spirit that knows no boundaries except those that you impose. There is spirit in the cancer, and spirit in the cure. There is a holiness that, if we are just a little open, we can smell, taste and see. This is the point that I should have been making. It is in people like Kathy Hult, and it is in you, no matter the chill of the autumn wind. None of us need walk alone.