The Truth

In A Few Good Men, the climactic moment comes with great anticipation. Tom Cruise, playing Navy prosecutor Daniel Kaffee, demands of Colonel Nathan Jessup, played by Jack Nicholson that he divulge how the murder of a marine was deliberately ordered. Cruise yells, “I want the truth!” and Nicholson answers, “You can’t handle the truth!!” It is high drama, and it somehow reminds me of how we do conversations about dis ease. The truth is something that we all want; yet deep down we wonder whether we can handle it. How we want the truth and how we handle it is unique to each of us, and it can be confusing for lovers and friends, family and colleagues. For some, truth is a hardship, while for others it is a relief. For me, truth is an elixir, potent and tart, washing away the stale sickness of carefully maintained identity, resulting in clear self-awareness. The truth is hard and surprisingly simple, but the truth is also easy and complex. Above all in dis ease, the truth is specific, general, and impossible to predict in its course, yet inevitable in its progress.

When I first learned my diagnosis, I sought truth like a cure. I contacted the ALS Association, surfed the net (beware the YouTube videos), and looked up every medical report I could find. I joined patient forums, discovered that there are dueling associations seeking money for research, and realized quickly that truth was not in the facts. The facts of ALS were presented in a way that didn’t make sense to me. Some just didn’t add up—5000 new ALS cases per year, with a 50 % mortality rate by the third year after diagnosis, doesn’t really equal 30,000 US ALS cases at any one time. Others seemed too good to be true—a cure can be found, just send money. And then there were truths that were just plain raw—Persons with ALS (PALS) who were filmed in all their paralyzed glory, cared for by haggard, weary spouses, parents, children, friends. I trolled through these different sources like a fly-fisherman in an Idaho trout stream. And what I realized very quickly was that each source sought to portray a picture that served a purpose, and discerning the purpose was more important than understanding the actual facts that were portrayed. Each truth was a carefully constructed façade, more complex than simple, yet easily predictable if the purpose could only be gleaned.

No wonder it’s so hard to handle the truth.

What I have learned in my time with ALS is that there is TRUTH and there is truth. The capital T Truth is one that perpetuates narratives that serve another purpose. Here is an example: ALS results in the gradual loss of all motor neuron function until the person is totally paralyzed and literally trapped inside their body. There is truth in this statement. But there is also great helplessness. I can tell you that it is true that physical function slowly and inexorably goes away. I can tell you that there is a helpless feeling that goes with this, especially when you don’t feel like you are ahead of the curve. But I can also tell you that each time I discover a strategy, a technology, or an attitude that helps me handle the next loss and the next, I don’t feel helpless. I feel empowered. The small t truth of the matter is that ALS moves uniquely at its own pace in different ways in different people. I have met numerous PALS who are living well past the 3-5 years of life that the Capital T Truth diagnosis gave them, mostly because they have chosen certain ways to mitigate each new symptom. I have also met PALS who experience small t truth despair, mostly because they feel they are no longer connected with humanity in any meaningful way, or that they are a tremendous burden on their caregivers. The truth of the progression and its consequences is just not a simple Big T Truth.

On the other hand, the small t truth that I have learned from dis ease is exceedingly honest, yet quite malleable. It requires a day-to-day, sometimes even hour-to-hour gut-check to discern its presence. Somewhere in the facts of the day is the truth elixir. Here is a good example. I follow the careers of former students, and current leaders in the world of education. Their tribulations are many, and their triumphs have to be quietly celebrated—leaders mustn’t chortle out loud when things go their way. When I get the chance to have lunch or meet for coffee, when we run into each other in unlooked for places, when we just get the chance to catch up; their passion and their pain inspires me. I love the opportunity to listen to them, and I feel privileged to encourage them back to a center that is built around the children in their care. It isn’t easy to be a teacher, a principal, a superintendent, a professor. You can be 95% successful, yet the one person in your classroom that you have not reached will haunt you. As a principal, you can easily find yourself having to support policies and procedures that in another context might have made sense, but in the place you find yourself, do not work at all. It is dis ease of another kind, and I get to listen, and empathize, and encourage, and support. It is tiring, yet I am strengthened in my own dis ease negotiations by these encounters.

A dear friend commented on my last blog that honesty is a spiritual state. She wrote, “A spiritual friend is one who is honest with me, so honest that his words break through any denial or illusions and help me be in this precious moment.” Boy do I get that. When I feel the panic of my lack of leg strength, or the fear that I will have to quit driving, my naturally manufactured response is to create an illusion that everything is OK. But it isn’t OK. I have every reason to panic, and I have every reason to fear. But that truth means I’m not crazy, that I’m not making this up, and there is a quiet satisfaction in the power to recognize exactly what is going on—no schemes, no hidden purposes, no Truths with a capital T hiding facts that are cleverly portrayed to advance some specific agenda without revealing it. And as my friend says, it helps me be in the precious moment.

In all honesty, most of us have Jack Nicholson moments each and every day. It could be a white lie or an ornamentation, some Baroque rationalization for some thing we have thought or done. And we cannot handle it, so we construct capital T Truth that will allow us to remain in the game for another day. I get that. I need that. But I also know this. Meaningful living requires that truth, with all its complexity and contradiction, remain the center-point of a life well lived. I am thankful that I can discuss my truths with friends, colleagues, family. Many of you have said to me that you appreciate how open I am about my ALS. Believe me, what I gain by placing my truths of the hour into written form is both empowering and therapeutic. I am thankful you read, and I appreciate being able to express dis ease this way.

In the long run, all of us have to decide how much truth we can handle, how much truth we want. But there is a quiet center to realizing just how contextual truth is, and how bound our life happiness is in finding not so much the facts, but the truth that surrounds them. I do want the truth. But I also need to be lifted by the life that truth defines. And in this, is the honest and authentic response to the truth of dis ease.

At least if I can handle it.

Streams of Consciousness

I am not really sure what the point of writing is today. If you will allow it, a little stream of consciousness would probably be good for me. If not, shut this off now, and read no further. I am coming off of a week that would have left me tired in my old normal able-bodied state. It involved travelling by plane to Phoenix, an adventure for anyone in the dis ease category, even more for one who must have a wheelchair all the way to the plane seat. I arrived home late and put some finishing touches on materials for Saturday’s doctoral course, taught most of the day on Saturday, and then sprang forward like the rest of Minnesota to lose an hour of sleep. So I am just whacked today. On days like this, I like to listen to music, or maybe just look out the window, contemplating the mysteries of life and love and doing the best that I can with what I have left. These are also the days of vulnerability, of being so tired that my impairments are more pronounced, more obvious, more up front. And of course, in this state, I am easily touched by beauty and heartbreak, emotions well up without any apparent provocation, and random touch can cause me such sensory overload that my muscles—or what is left of them—seize up with cramps of involuntary fasciculation. Weird huh? But one of the gifts of dis ease is fatigue’s filter.

There is a perverse beauty to these gifts. The heightened awareness of physical vulnerability is almost sensuous in its presence. And the fatigue can be like a convex mirror, bending and shaping the images it presents into new realizations. I wouldn’t say that I actually like the feelings that are inspired by such tiredness, but it reminds me a great deal of descriptions I have read of vision-quests. The damnedest things suddenly become very clear—past pain, human frailty, regrets, joys, and visions, such visions of color and sound and wholeness beyond physical limitation. It is altered consciousness at its most primal. No drugs needed, alcohol not within a sniff, only the purity of fatigue washing over my senses.

Would I have paid so much attention to physical dis ease in the world had I not been the recipient of the gifts of ALS? If I am honest, I have to admit that the arrogance of my own able bodied existence allowed me to believe that I was in complete control of my fate. If I am honest, I would have to admit that I imagined disability like I imagined being an astronaut—it was a theoretical construct, an unreality completely out of reach, and if disability came, it would be a swift end to an active lifestyle. And of course, being a good white liberal, I truly thought that I could properly demonstrate care about the implications of dis ease, whether they were social in terms of sensitivity to the barriers that come with its disabling forms, or personal in acknowledging the needs of brothers and sisters just trying to make a go of a life well lived.

I had no idea.

Here is what I know. The physical decline of our bodies is inevitable. We can do only so much to ensure that our bodies will work as well as they can, but our bodies will break down eventually. Dis ease hastens the break down, and it pushes us to find ways to cope with its immediate challenges as well as its ultimate destination. And for me, the way this goes is entirely dependent upon whether or not I can come up with a sweet spot on which I can focus, a point of solace or strength or inspiration or just a place where I can crash the bad stuff into the good. I don’t know if you have this focal point. For me, it is almost always an image of Ev or my sons. It used to be that I would think back to the feel of the sun on long bike rides, but I can barely remember that feeling now.

Better to think on my beloved.

What makes the dis ease journey so challenging is that lives don’t come with technical manuals. Countless humans have tried to write guides for the life well lived, but most of these are as clumsy and well-meaning as one would expect from the lack of surety we all experience about well lived lives. Some are written by shysters and buffoons, others by incredibly caring people. Most of them are not technically meaningful, even when they are well meaning. And in a way, I guess that writing a manual for life is what this blog might be about. But here is the caution. It is a manual for an artist, when the requirements might be more toward engineering. God knows that if I could fix the electrical system, I would do it, but the technical fixes are not available. So it reminds me of the line in Zen and the Art of Motorcycle Maintenance–“Assembly of Japanese bicycle require[s] great peace of mind.” With no engineering miracle in sight, peace of mind has become more and more important to me. Having a dis ease such as ALS focuses things away from the engineering and into the metaphysics pretty quickly.

Oh I know, I am playing the engineer game. I’m in a drug trial, I troll the internet looking for the latest research. I participate willingly in clinical activities, and I am constantly on the lookout for technology that will help me conserve energy and stay reasonably engaged with friends and family. But in the end, it is the artistry of living, the peace of mind, the right attitude that really determines how things are going for me. And that is why I think the recovery days are so important. When I was young and able-bodied, I just didn’t see the need for reflection. As I grew older, I recognized reflective needs, but was so caught up in all the stuff I was doing, that I still couldn’t make the time. Now, the time is not a choice. The fatigue of dis ease insistently forces me to build in the time for my head and my heart and my soul, because ultimately, the engineering problems will not be solved. ALS, unlike so many other manifestations of dis ease, will not get better.

So I am in this space of fatigue and emotion and visions from mountains that I’ve never visited before, craving the engineering fixes that are not available, and completely given over to a day of reflection and recovery, as much as recovery is available. If I were rewriting the manual of my life, I’d have built this time in long ago. To build a life facing dis ease, one needs peace of mind, and that is a great place to begin. There is engineering, and there is artistry, and there is vision.

At least if I am not too tired to recognize it.

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.