Say It Ain’t So, Joe

If you have been reading closely, you might have discerned my skepticism of individualism; the idea that the end-all and be-all for determining the goodness of any course of action should be based upon what is first good for the individual. As much as I believe in individual potential, I cannot help but feel that there must be a balance between the one and the many, the person and the people, I and us. Individualism taken too far has no room for compassion, and has no patience for regret. While our culture tends to see a “No regrets” life as extremely desirable, I cannot help but think that without some sense of regret, there is no opportunity to grow beyond one’s current state. “No regrets” is a recipe for walking-death, calcification of capacity and capability. I cannot imagine having no regrets. I cannot imagine a life where regrets–both of commission where one actually does something they would take back, and of omission where we should have done something but did not–were not front and center as major shaping experiences of the persons we are. In regret is realization, and my teacher, friend and constant companion ALS, sharpens regret’s realizations so that omission dully aches and commission recognizes that there isn’t any time to make the same mistake again. Dis ease points to regret and tells you that there is no going back.

Regret is strong on my mind this week, because I have, in spite of my best intentions, paid such close attention to the scandal surrounding Penn State University, its football program, and most particularly the former coach Joe Paterno. The story could have been written by Euripides, for no matter how wise or wizened the person, there is always an opportunity to commit a mammoth mistake, to turn our backs on something that we clearly have to know is happening, and to instead try to cover up our failure through the inappropriate exercise of power, influence, or otherwise. It is the nature of life that the greater the legacy, the more there is to lose. Such is the case for this proud University and the enigmatic Joe Pa with the realization that its great narrative–that good guys can really be good guys–must be revised.

In the past months, Paterno’s legacy as one of the good guys in Division I college sports has tumbled down a rabbit hole of his own making. Since the scandal came to light that Assistant Football Coach Jerry Sandusky used his position and his Second Mile charity to “groom” boy victims for the most lurid and disgusting criminal sexual activity imaginable, Paterno’s bequest to the legacy of his university and football program has plummeted from a pinnacle where ethical and successful are not mutually exclusive; to a middle ledge of recognition that the coach committed sins of omission—he didn’t report and he didn’t follow up; to the bottom feeding realization of callous commission—Paterno knew what was going on and actually interfered in the investigation of his minion. To salt the wound even more, we have learned that Paterno sought an exit contract of great advantage, even while the outline of this horrible story was coming to light and he was being called to testify in front of a grand jury.

When focused only on the situation, the cover-up, the lies, the lack of responsibility and the documented hyper-concern for public relations fallout rather than the harm inflicted on so many young children, it is hard to see this situation as anything but horrific. But for me, there is a huge lesson here, one that relates directly with what I have learned from dis ease about regret. That lesson has to do with transparency, honesty, and the ability to name something for what it is, to speak truth in the face of power, to hear even when you don’t like the message. In a way this scandal goes beyond Paterno, and is instead about the fact that each one of us will face the choice to be forthcoming, to admit that which we regret, or to regret for the rest of our lives that in our lack of honesty came more harm, hurt, pain. In this fact is that small kernel of hope that I hold.

Nothing justifies Sandusky’s behavior and Paterno’s cover-up. Paterno and the University Powers were scared and rightly so. Our gotcha culture should frighten the most honest among us. It offers very little payoff in telling the truth. Admit a mistake and you will be portrayed as mistaken; admit to regrets and gotcha will make you truly regret it. The cycle feeds upon itself until it becomes so harmful, so lurid, so unreal that it is impossible for the person in the moment to see any way out except through obfuscation or suicide or stupidity. These powerful men were frightened of the consequences, and I think that is the point. The realization that you will suffer the direst consequences for honest, transparent communication about the worst thing possible happening, is something in which you can have faith, and whether or not you have stepped forward in truth speaks reams about your strength and faith and character.

Consider, in 1998, had Joe Paterno and Penn State University confronted Jerry Sandusky, reported him to the authorities, come clean about the implications that something like this could take place right under their noses; and then used the power that only a Research One Land Grant University possesses to build a center dedicated to the prevention of such heinous abuse, we would now see Paterno’s confused legacy much differently. Instead, he missed the opportunity to confront a terrible wrong in his program, root it out and insist that the university dedicate itself to providing leadership in child abuse’s prevention. The regrets that those responsible for leading the Penn State community must currently feel should be immeasurable. That such an opportunity was not seized at the time, and that only now in calling out the outrageous hubris of institutional fear and corruption is there any talk of honesty and healing, is beyond regrettable.

In the end, there is no hiding the truth. The more that I live, the more I keep relearning that the things that I do will almost always come to light, and the things that I could have done will become obvious over time. As I lose more and more physical function, I have also learned that the things I cannot do–there is no hiding the physical regression of ALS and the consequences of a dis eased existence—have their own eventual grace. And in such grace is love, blessing, faith, hope, the realization that love unexpressed is love unrequited.

Or, you can in the words of Pink Floyd, “…exchange a walk-on part in the war for a lead role in the cage.”

Each one of us is granted the opportunity to reach past our regrets, our fears, our pride, and try to make things right, even if our attempts are rejected. Dis ease teaches that such legacy, framed by our care and not by our fear, is far more blessed than the embarrassment and humiliation at the time. I know that honesty requires courage. I know that courage requires transparency. I know that not everyone can handle such openness. But I also know that if something good is to grow from something bad, then it begins with light and sun and fresh air and truth.

And then, I think it might be reasonable to say, “No regrets,” both individually and collectively.

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.

Happy Birthday Stephen Hawking!

As a child, I idolized professional athletes. When you grow up in Indiana, it is difficult not to want to be a basketball player, and although I was never as good at basketball as I wished I could be, I loved the game and I loved the players. Probably my favorite player was Bill Russell, center for the Boston Celtics. Skillful, savvy, and just a little bit irreverent, Russell was everything I admired in a player. I used to tune in to the professional basketball games on our fuzzy black-and-white TV and watch tiny avatars of Russell and Wilt Chamberlain at war with each other. Clearly, Chamberlain was the more talented player. But Russell would always win, at least it seemed that way. Although he gave away significant height to the taller Chamberlain, it always looked like Russell got the better when the two went head-to-head.

As I grew older, and especially after I became involved in music, I idolized the great singers. I still love listening to Bubbles, Beverly Sills. Intelligently funny and remarkably talented, this wonderful soprano was great on the talk show circuit and a kick to hear. As a young singer, I couldn’t get enough of Placido Domingo, Luciana Pavarotti, heck I even enjoyed listening to old Richard Tucker records. When I was in high school, I jumped from acid rock to recordings of Stravinsky almost in the blink of an eye, and when I discovered Dietrich Fischer–Dieskau, I thought I had died and gone to heaven. Maybe it was the fact that he had recorded all the Schubert Lieder with the great accompanying pianist Gerald Moore, or maybe it was the fact that he was 6 foot 7. I idolized this guy.

We learn from role models. They inspire us to look inside ourselves for things we may not have realized we could do, and they show us ways to accomplish our inspirations when no other way seems apparent. And this week, I’ve really been thinking about role models, especially role models for dis ease. I probably shouldn’t go here, but I cannot help it. I have watched our media present the story of a young man in the Twin Cities, slammed into the boards during a JV hockey game resulting in a severed spinal cord. I am so saddened by this young man’s new reality, and what I see happening with his story is unfortunate. The Able Bodied Media can handle it if he is a superior young man with disabilities. What isn’t a great story is the everyday hard work helping him to build a life within the remarkable circumstances in which he finds himself. Medical expense is just one part of handling physical impairment. So I ask, where are this young man’s role models? He has joined, not by choice, a whole new group of people. I am hopeful for his medical bills, but I ache for the social, emotional, and physical challenges that face him. There will be all kinds of guidance, but role models will be hard to find.

I’ve joined a whole new demographic, and I realize that there isn’t a lot of discussion about idols and role models with my new peeps. Who do people with physical impairment look to for how to live a life that makes some sense? Our role models are few and far between. I don’t think it can be people like the late Christopher Reeves. He played the “super-crip, let’s find a cure” card one too many times and really did not seem interested in exploring meaningful life within the confines of his physical impairments. It isn’t that I don’t appreciate his work and the research foundation that he started, but the fact is that cure is so specific, and impairment is so manifest in its requirements for getting through the day, that role models are just not that apparent. And I think there are real, unfortunate consequences for this.

A very interesting experience for me is the new acquaintances I have made as I roll through the skyways of Minneapolis. In the past, I don’t think we would have given each other a second look, but now I find myself making eye contact with a whole different group of humanity. There are other rollers. We never speak, but we do make catch a look and there is a knowing smile that we share. And the guys (yes, mostly guys) who used to hit me up with “Hey I’m just in from Chicago on the Greyhound and my girlfriend and kids in the car over there, and if I could just get 20 bucks I could get them back to Chicago…,” instead just say, “how ya doin’ my man?” And the older immigrant gentleman communing with the spirits of his ancestors while walking the skyway around the Convention Center gets a little quiet when I roll up. He actually smiled last Friday when I came up to the door opener on which he was leaning. Then there is my favorite musician—with a face ravaged by alcohol abuse, but the creativity to sing ironically about Tim Pawlenty and Michelle Bachmann. He actually talked with me, making comments about the lack of parenting skills we had both just witnessed.

I have talked in the past about the weird alignments I notice in my own dis ease journey, and this week is no different. Juxtaposed to my experiences in the skyways, is the fact that this week, the great physicist Steven Hawking, turned 70. He is one of the longest-lived persons with ALS that we know, having been diagnosed when he was 21. Now, he has reached the point where he must have round the clock care, for his ability to control any muscles at all is reduced to one muscle in his cheek. He uses this muscle and a laser dot to compose on a computer that speaks for him. It can take 10 minutes to compose a sentence.

I don’t want to be like Stephen Hawking–I really like my marriage for example. But I look to him as I think about where this life of mine is headed. He has managed to write, to research, to communicate, and to offer serious explanations for the way our universe works. All of this has been while managing ALS. I have heard media discussions of him in which his physical infirmities have been used to define him, yet most people, once they get to know his story, refocus on the great thinker that he is.

This is where things get a little confusing. I’ve joined a demographic that has no choice but to deconstruct the images carried in the heads of others. The power wheelchair has become as much a part of me as the color of my skin. And here is where the experience is really weird. This new demographic has less privilege, less consideration, is more vulnerable, and must manage day to day living with great care and planning. Believe me, I know that I am not homeless, or substance addicted, or down on my luck, or communing with my ancestors. Yet I find a real connection, sometimes no more than a glance up and down, with my fellow humans with which I have been sharing the skyway. And we find ourselves needing to deconstruct pity, and misconception, and obtuseness, and even hostility. That doesn’t mean everyone approaches us that way. I am so thankful for the human love and the willingness of my friends and colleagues to allow me to define my space, but really—the fact that many often speak in a loud voice and quite slowly tells me that humans in general really don’t have a clue about dis ease, disability, and impairment as humanness.

So maybe Stephen Hawking offers us at least the beginnings of a role model for living with dis ease. I don’t mean this to be hero worship. That is an immature concept, for all of us know that no human being can live up to the irrational expectations we put on our heroes. We would be better served to learn to admire how in spite of the flaws and foibles of being human, we can still find a way to raise ourselves above our own paltry expectations. What great role modeling that would be!

Happy Birthday Dr. Hawking. Because of you, I imagine myself through my fears, even as dis ease advances. You have shown us a way, a humanity that most would not choose, but that all can admire. It would be great to meet you. We could talk basketball or music or physics. Maybe you’d be up for a roll through the skyways of Minneapolis, perhaps to hear, “How ya doin’ my man?”