Susan, Dudley, and Eric

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence that we believe defines who we are. It reminds me in some ways of journalist and fellow Person with ALS (PALS), Dudley Clendenin.

You might remember Clendenin. Diagnosed with a particularly aggressive and virulent form of ALS, he wrote “The Good Short Life,” a column first published in the New York Times detailing how in the face of “Lou” he would seize his own death. While not revealing the manner by which he would kill himself, he was very clear about his need to take responsibility for the act. He expressed the same independence that I cannot help but read in Susan Spencer – Wendel’s book.

Spencer – Wendel has decided to kill herself also, albeit in her own way. She does this through a year of “living joyfully,” rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.

I need you to understand that I have no problem with a person with ALS exercising as much control over their own lives as possible, even if it means hastening their own demise. Until you face ALS and own it as your own personal dis ease, I don’t see how you can judge such words and actions. Until you face ALS, agreement or disagreement is purely speculative. And therein is a seed of understanding why I have had such difficulty and anger in writing about a fellow PALS.

When Dudley Clendenin wrote about his decision to off himself, it was because he did not want to become a “conscious but motionless, mute, withered, incontinent mummy of my former self.” Aside from the fact that incontinence is not usually a side effect of ALS, Clendenin only expressed the fear that all of us with ALS secretly or not so secretly carry – that somehow we will become “locked – in,” trapped in our bodies with no way out. At that time, the columnist David Brooks seized this imagery as a shining example of how those of us who are in a permanent state of incurable illness, should realistically address our responsibility toward lowering the cost of healthcare.

Like Clendenin, Spencer – Wendel also expresses such fear, and like David Brooks, mainline journalists respond from their own able-bodied frameworks. In an interview with Cokie Roberts, Spencer – Wendel is asked, “Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer…” She answers:

The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is that there is nothing behind the door…I am not giving up. I am accepting…Also a major factor is my husband. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife.

Scott Simon of National Public Radio, in his Weekend Edition interview with Spencer – Wendel declares, “This book is so funny,” immediately after asking Spencer – Wendel’s husband how he is doing, receiving the following answer:

“Well – difficult. Every day I wake up, I feel sad. That’s my first emotion. And then I roll over, and I look at Susan. And I realize that she’s not allowing herself to feel that way, so I can’t – and I don’t.”

Hilarious, right?

I think my greatest disappointment is in the not so subtle ratification that a life framed in disability is so easily judged to be less then living. From an able-bodied perspective, the storyline reinforces a Temporary Able Bodied myth long on issuing a hall pass for terminal living – no responsibilities, no problem – and short on looking at the consequences of such easy assumptions. It reinforces singular focus on the person with dis ease and conveniently disregards the family, friends and colleagues also affected. It reinforces the idea that life with massive disability is life not worth living, unhappy and unfulfilling, meaningless and unengaged. As Ev says, “Spencer – Wendel and Dudley Clendenin are journalists, and by virtue of that fact anything that they publish becomes authoritative.”

They do not speak for me.

I know another story of blessings and complexity and empathy. In 2009, Eric Lowen of the folk rock duo Lowen and Navarro, participated in a New York Times perspective called “The Voices of ALS.” Listen to his words.

The hardest part for me is the pain I bring everybody. The fact that my children have to deal with it and my wife, I wish I could disappear quietly. But it doesn’t work like that. That’s the most horrible for me.

He continues:

I thought at first I was going to live every day to the fullest and not let anything stand in the way, but then I got a hangnail, then I got a stomach ache…life is pretty much the same no matter what and the thing that has helped me the most is a quote from a friend of mine. She said, “We’re all on a journey. You just have a better map.” I think that’s the way it is.

I so get this it makes me hurt.

What seems to get lost in able-bodied frameworks is the message that life goes on, that ALS can be a life sentence, not just a death sentence. And while we cannot all be poets, Eric Lowen sang ALS in such a profound way until he could not perform any more, engaging in new life even as ALS slowly eroded the old life that was his. He wrote:

And it’s beautiful how new blessings unfold in ways I could never have known,

but I’ve still got some time on my hands,

I’ve had to run, I’ve had to crawl, been rich as a king and had nothing at all,

still raisin’ hell and tearing down walls, I know where I stand, I’m learning to fall.

– Lowen and Navarro, Learning to Fall

There is a postscript to all of this. Dudley Clendenin, a man who could not see himself living with ALS, prolonged his life, even agreeing to a feeding tube. Why? I cannot be completely sure, but he was offered a book contract to tell his remarkable story. The book contract offered him the opportunity for re-engagement with humanity on terms he was able to quasi-define. He died in May of 2012 with his boots on, having sent the galleys of his new book to his publisher.

And that is the real point. We can either die while we are dying or live to the fullest. But massive disability is not the determinant. It’s learning how to fall into new blessings.

You can watch a video of “Learning to Fall” here.


La Corrida

The first time that Ev took a group of 5th graders to France, she returned with two cultural realizations that would change the way that we lived our lives from then on. The first came from the family that she stayed with. They introduced her to the joys of French rosés, something we had always associated with bad vintages in funny, squat bottles from Portugual, or worse, in pop top jugs from California. After this trip, our summers were never the same as we came to discover all kinds of great pink wines. And in addition, she also brought her discovery of the French popular musician, Francis Cabrel. Prolific and eclectic, his later works are introspective in the same way that defines the paths of many 20th century French philosophers. I don’t speak French, but I love Cabrel. On road trips, we’d pop a Cabrel CD into the player in the car, and I’d ask Ev to translate the lyrics real time. I have sung enough French to recognize much of the vocabulary, but Cabrel is often symbolic, so we both delighted in the process–me getting to really know the songs and Ev meeting the challenge of translation on the fly. And although there are a few Cabrel songs I would be happy to never hear again, some of his songs would make my “Stranded on a Desert Island Playlist.” My favorite Cabrel album is Samedi Soir Sur la Terre (The last night on Earth), and one of my most favorite of all Cabrel songs is the first track—“La Corrida.”

“La Corrida” is the tale of the bullfight told from the point of view of the bull. In contemplation and waiting in a dark room, the locked door is suddenly sprung, and the bull finds himself in the bright light of the ring. At first he thinks he just needs to defend himself, and so confident is he in his own strength, he boasts that it is the toreador’s ears that the bullfighter’s lover will sleep upon tonight–a reference to the practice of awarding the ears and tail to the victor. But confusion arises as the ring closes with a locked door behind him, as the picadors like peacock puppets, stab his shoulders forcing his head lower and sapping his strength, as the dancing toreador in ballet shoes dodges and twirls around him. Suddenly he is hyper-aware that this is a fight for his life. Throughout the song, an echoing refrain is the bull’s bewildered, ironic question, “Est-ce que ce monde est sérieux?” (Is this world serious?). On the studio recording, the song ends with Nicholas Reyes, founding singer from the Gipsy Kings calling a la flamenco, “Yes, yes! Dance man and dance again and kill other lives, other bulls. And kill others, come, come and dance.” Like so many Cabrel songs, “La Corrida” has a meaning that is both obvious—bullfighting is cruel; and subtle—we have more in common with the bull than we may wish to admit.

As you can imagine, the meaning of the song has changed significantly for me. When I first listened to it years ago, I was struck by the ironic refrain, “Is this world serious?” Although I had experienced situations before where I might have asked the same question with the same irony and bewilderment, I had no clue of just how metaphysical the question was. That has changed. ALS allows no irony. Dis ease is serious business. It forces existential interpretations of meaning, seeking out new ways to translate past life experiences into present definitions, and a sense-making capacity that requires more consciousness than most of us might ever desire. Everything, everything is colored, filtered, diffused, washed, shadowed and illuminated by the incessant presence of dis ease, so what was once a mere simplicity now must be carefully thought through for its consequential complexity.

Even so, I love the bull. He dares me to examine my life in the face of dis ease’s deterministic push.

I admit that I am privately more than a little embarrassed by how the bull’s arrogance and confusion and his misunderstanding of his own capacity in the small universe of the bullring, was interpreted by my old normal self as pathetic, more of a “there but for the grace of God go I, but I’d never be caught dead in such a place” interpretation. As if I actually had the choice, now I recognize my own arrogance in being so flippant. ALS has no room for simple truths. Even the title of the song has deeper meaning than first glance; “La Corrida” translates as “The Run” in Spanish and French, but it doubles in French as “Bullfighting.” It is from the same Latin root as the English word “corridor,” and somehow the three meanings combined seem almost appropriate in capturing what it is like to experience dis ease’s progress as I am thrust far too swiftly toward the ultimate endgame, a dance down a hallway with but one exit, not quite dodging the picadors that would sap my strength until the coup de grace is delivered. Est-ce que ce monde est sérieux? Indeed! Such questions transcend simple meaning.

Ultimately, I find myself granted one kindness that my friend the bull does not have—the time for consciousness to unfold both in grace and horror. While a similarity between us exists–the bull’s sudden epiphany of his mortal danger in the bullring runs parallel with my own violent rip from immortality by an ALS diagnosis—there also the similarity ends. This dance of ALS slows time for me, while my friend has no time to mindfully examine his predicament. The gift of dying in slow motion is the choice to practice a level of attention that sometimes feels like a Mephistolean bargain; each new insight a trade for physical function–the loss of a finger-lift or less a fraction of yesterday’s strength today–until there is nothing but realization that carries through week by week and day by day.

This past week had so many highpoints, but by Friday, it was all I could do to hold things together. It isn’t about the highpoints anymore, for highpoints are too prone to ego without authenticity. Rather, it is about the gifts paid forward, each to each, never fully perceived but realized nonetheless–kisses stolen in the darkness, love proclaimed from the depths of the soul’s balustrades. It is about the energy of my sons cooking with their true loves in a kitchen that demands energy for a father soaking it up like gravy sopped by crusty bread. It is the look my Ev gives me when she knows, she just knows, and I am comforted for a few moments more. It is the sharing of colleagues in an educative space, the joining of the many into a set of diverse purposes that somehow narrate a unified tale of epic proportion and day to day living. It is fatigue morphing into illumination as friends succumb to the inexorable, the next loss, while their families and loved ones blink their comprehension back behind their eyes, flooding their souls with tears.

Music has always had the power to speak the unspeakable, to ask the unaskable, to understate the obvious and to reveal the hidden depths that lie much more in the listener than in the music itself. “La Corrida”–this small trifle, this song spoken in the space of a framework defined by AM radio fifty years ago–understates dis ease, and it simultaneously reveals its magnificence. I wish it was nothing that a good rosé couldn’t knock the edge off, but ultimately, we kneel in dis ease’s presence, nothing more than bulls in the finite space of the ring asking, or maybe pleading to understand: Is the world really serious?

And it is. It really is.

Here is a link to a reasonable translation using the studio recording, with an anti-bullfighting message.

And here is a link to Cabrel singing “La Corrida” live on YouTube.

The Author

Yesterday, we held our annual children’s literature conference at St. Thomas. I love hearing the authors speak in their own voices. Each approaches writing with such different ideas that I don’t think I could ever tire of hearing from them. Today, I am still filled with the inspired imagination of this year’s two guest authors. Christopher Paul Curtis writes Flint, Michigan into stories of childhood punctuated with assembly line sounds of the rust-belt auto industry and a little big band jazz to keep it honest. Linda Sue Park undulates between the lilt of her parent’s Korea, and the careful steps of a girl that carries water from watering hole to village, eight hours each day in the Sudan. She has that uncanny ability to take a single object, event, idea, and see a whole story spring to life around it. And even their presentations yesterday illustrated the many ways to author a story. Curtis jammed on memories of his mother, alternately reading and dancing the parts as each character delivered lines that made you laugh and cry. Park read carefully crafted sentences, specifically designed to move the mind toward examination of assumptions about how we represent life to our kids. I am not trying to get you to go out and buy their books, although you would not be disappointed with their writing. Like all great writers, they move you to imagine beyond what you already know into a stretched reality that accommodates what you might never have constructed on your own.

With that in mind, as I listened to both these authors speak, I had the strange out of body experience of a different reality, an experience that has come so often in my dis ease journey. Suddenly, it seemed to me that I was not so much an author but authored, not an inscriber but an inscription. Dis Ease is the supreme writer of my life. It has scribed my plot line, given me the characteristics to negotiate the twists and turns of this ALS story, and left me to wonder not so much about the ending, but how I am going to get there. As Mr. Curtis and Ms. Park spoke, the epiphany of my own illiteracy in all things dis ease, and the catch up I feel I am always playing with the crazy roller coaster of my author’s plotline was suddenly obvious to me, and I was both comforted and afraid. I can imagine how this sounds to you—a little nuts, a little too literary, but hear me out. Life-authorship is not that radical an idea.

I have numerous friends who believe that their lives are already written, ordained by God, and that their ultimate responsibility is to stay the path predestined for them by some power greater than themselves. And this isn’t just the Calvinists I know and love. Many in this world believe that the lives they are living now are the result of the lives they lived before, that their current circumstances are the direct result of the life decisions they made in earlier lives. Even those who deny such supranormal controls, atheists and agnostics, still wrestle with deterministic variables in their own spheres of influence. They recognize such determinants as quality of education, poverty, and privilege as authors of the lives of young people, either lifting them up or dooming them to cycles of failure. Each of these phenomena represent a life author, with set plotlines and characters that are almost caricatures of stories long played out. And the greatest fiction – nonfiction tension that they write is that we each control our own destiny. That is where Dis Ease trumps all.

Dis Ease levels all stories so that the only one left standing is the human one, broken or lifted up, by the experience of dis ease. And it is here that I find myself absolutely amazed by my author. She has written my life as if the person I was never existed, and then given me the choice to embrace or reject what I thought I knew. Dis Ease makes it so easy to just give up, to throw up my hands and deny the lessons I thought I was learning when I didn’t discern the author(ship) or author(ity) of Dis Ease. It would be so simple a thing to allow the roaring, unconscious, almost debilitating knowledge of journey’s paths and journey’s end to dictate an unthinking, even panicked response to this horror story visited upon each occupant of this human plane by Dis Ease, the writer of our destinies. And I see it—

If you believe that you will never have enough, Dis Ease is your author. If you believe that real love is always just out of reach and can only be gained by tossing over those for whom love was professed in favor of some idealized lover, Dis Ease is your author. When death steals away the presence of half your soul so that you think the only thing you can do is grasp the remnants of your previous life so tightly that they can only feign living in your presence, Dis Ease is your author. When bodily breakdown frightens you into hiding from your future travails and denying your past capacities, Dis Ease is your author.

I know this author well, for he is present when fear translates into the scraping, caustic, cynical experience of believing that there is nothing better than this. He imagines souls that feed more on prisons and walls and despair, than schools and parkways and hope. Dis Ease is this author.

The temptation is to forget the stories that have always been our center, to believe Dis Ease, that they do not matter anymore and are irrelevant to the souls we are to become. What a flinty, brittle existence it is, to buy Dis Ease’s plots. In that dark space, one’s humanity is always in some inhumane battle, mostly with one’s self, as Dis Ease hovers round pulling this string and that, like the great puppet master it professes to be. And it is tempting—you get to give up responsibility, hope, joy, kindness, human engagement. Just blame it on the author. Blame it on Dis Ease. I get that temptation, but the author doesn’t always get the last call.

Many times, when authors speak about their books, they talk about characters that, to their surprise, take sudden twists and turns that were not planned. Indeed, the best books I know are the ones where the author is almost shoved out of the way because her “creations” have not behaved as she intended. And that is more than a good story, it is great literature. When I want to meet that character, experience that event, know that snippet of knowledge, understand that concept so deeply that it has now become a part of me, then I know that the author’s work is not so much about predetermination, but rather about choices offered. And that is where Dis Ease, so overwhelming, so all consuming, so omnipotent, can seem to forget that his characters can still make the choices that determine the real story. Dis Ease presents the logic of despair, but he cannot write out of the story the choice of human grace, the choice of love over fear. As characters in this great novel, we may need a little help in pushing back, and we will have to find the strength to reach out to each other for support, but we can take the story away from our author. We can choose to live until we die.

How do I know this?

I’m just now reading it in the book, and as always, it’s much better than the movie.

Writing It Down

I was watching The Jay Leno Show last night, trying to get up the strength to go to bed. Usually, I watch the other guy, but I wanted to see this one because it was a rerun of an October show featuring President Obama. Don’t worry. I’m not going to talk about the presidential election. What was of real interest to me was the fact that Leno also had the musical group consisting of (I think he has had his name changed to include the moniker) “The Great” Yo-Yo Ma, Chris Thile of the Punch Brothers, the sublime singer Aiofe O’Donovan, Stuart Duncan—one of the most accomplished bluegrass musicians on earth, and Edgar Meyer—brilliant, eclectic bassist par excellence. They performed “Here and Heaven,” one of the best tracks from the album, The Goat Rodeo Sessions. If you download The Goat Rodeo Sessions, there is a ten-minute video about the recording process that brought these vastly different musicians together. It is fascinating. While each of the four string players has their own expertise, the melding of alternative bluegrass style with the eclectic cello of Yo-Yo Ma requires enormous imagination. I love how this comes together, how fearless the musicians are.

One of the issues in putting together a recording like this is that not all of the musicians read music. So when they recorded, there was Yo-Yo Ma with his music stand and the entire score written out in front of him, while in contrast was Stuart Duncan, navigating the same pieces of music using only a yellow piece of legal paper with a few cryptic notes. And if the decision had been made that a prerequisite for the musicians in The Goat Rodeo Sessions was musical literacy, the magic of this recording would never have happened. Jack-of-all-trades musician Stuart Duncan would never have been allowed to play the session. Yes, he is an outstanding musician. His ability to move seamlessly between the backless five string banjo, the fiddle, the mandolin, and back again is in my opinion, what makes “Here and Heaven” such a powerful track (Aiofe, pronounced eee-feh, O’Donovan’s singing notwithstanding). But he is the heartbeat of the piece, and in order for him to learn the music, the other musicians had to go out of their way to teach him his parts.

There are a number of ways to interpret Stuart Duncan. We could look at him as a talented musician, full of vision, providing unity of insight and broad variety of instrumental timbre to the recording. I know when you first see the video, it is overly easy to focus on the work of Yo-Yo Ma or Chris Thile or Edgar Meyer. After all Yo-Yo Ma is Yo-Yo Ma. Chris Thile fronts the group on much of the album, and Edgar Meyer is able to switch style gears mid-piece so fast that he leaves your teeth in your socks. Aiofe O’Donovan salts two of the tracks with her clear, breathed straight tone. But it is hard for me not to be really affected by what Stuart Duncan brings to the sessions.

Another way to interpret Stuart Duncan is that he is disabled. He cannot read music. He is reliant on his fellow musicians in order to learn the songs. He does not pull his own weight. Perhaps, he is more trouble than he’s worth. After all, he could have learned to read music. He could be contributing his fair share. Why should the other musicians have to go out of their way to teach him the parts? If Stuart Duncan cannot read the music, then perhaps we should get another musician who can. The disability lens forces us to focus on what Stuart Duncan cannot do. It is a deficit model. And it encourages us to punish Stuart Duncan for his deficit. What a mistake that would be!

I have written before that disability is a social phenomenon and that the greatest disability I perceive in my dis ease journey is what others think I cannot do. This does not mean that I do not have significant impairments. I do. I cannot walk. I tire easily. My hands are weaker. But these are just physical impairments, and there are numerous strategies around them. Others can assist. Ev helps me get my socks on, make breakfast, remind myself that I am no less a person because of my physical weakness. It would be a mistake to put me out to pasture, even though I require assistance because I have much to offer, just as long as I can get dressed.

Not all of us can be Stuart Duncan. Not all of us carry the enormous talent that Mr. Duncan so obviously exhibits. Would that it were so. It would be much easier to argue against a social model of disability and dis ease if everyone was so capable. Yet, even if we all cannot be as able as Stuart Duncan, it is worth it still to deconstruct the social model of disability. The least talented of us all, nevertheless carries human gifts well worth the effort of helping them emerge. Just as Mr. Duncan is able to rely on his musician comrades, so should each of us turn to one another to assist us to reveal the beauty behind our own individual impairments. The bass player, Edgar Meyer observes, “What really brings the piece to life usually is the way that the people interact when they play it.”

The song “Here and Heaven” ends with the following line:

‘Cause we are not lost enough to find the stars aren’t
crossed why align them why fall hard
not soft into
Fall not winter spring not summer cool not cold
and it’s warm not hot have we all forgotten that
we’re getting old.

When you have ALS, you recognize very quickly that, pardon the pun here, “Time is [NOT] on My Side.” There isn’t a lot of time. But like “Here and Heaven” says, “have we all forgotten that we’re getting old” so how really do we want to spend our time? Edgar Meyer (who kind of emerges as the philosopher of the background video) states early on, “Yo Yo’s going for the same thing that Stuart is going for, which is to internalize the music—there’s just different ways in.”

I guess that speaks to me. As human beings we are given the opportunity every day to celebrate the different ways in. And the opportunity for celebration, that very same opportunity, can be used to dehumanize and exclude. We are offered a myriad of choices of how to internalize each others’ humanity, projecting it out in engagement with the great collective of our brothers and sisters. Or, we can remind people of what they cannot do, why they don’t deserve extra support, why it is extra work for us to assist, or why they should be punished for their lacks and disabilities. But disability has taught me that humanity is far richer, far more colorful, and far more remarkable than such deficit thinking, especially if we put our effort into its emergent beauty. That is what these musicians do, without even thinking about it. If the problem is reading the music, then teach the songs by rote, playing to the talents that each one brings, recognizing that they are “going for the same things.”

And maybe, just maybe, a Stuart Duncan will appear and play the spit out of a fretless, backless five-string banjo, breaking our hearts with the human beauty that he pours onto our lives.

Here is a video of “Here and Heaven”

Here is a video of “Inside The Goat Rodeo Sessions

The Teacher

It is probably no surprise that at some point in this journey, I discuss teachers. After all, for me the profession is nearly genetic, in my DNA so to speak. My grandparents and parents were educators, and as hard as I tried to stay out of teaching, once I found myself in a school and working with kids, I was hooked. I also am well aware that there is a certain ego-centrism we humans carry—something along the lines of “if everyone knew the special experiences I’ve had, the world would be so much the wiser.” So I apologize. I need to ask your indulgence for this one, because I need to talk about teachers—teachers that I have known, the teacher I wanted to be, and most of all, how the persona of ALS has become one of the most effective teachers I will ever know. In reflecting on my own career as an educator, now over thirty years, I have to admit that some of my most deeply held beliefs have been turned on their collective ear by the education in which I now find myself enrolled. More specifically, the pedagogy employed by my new dis ease mentor is one that is probably the most effective I have ever experienced. I share with you these observations, none truly adequate to the topic, but all heartfelt to be sure. Or, to paraphrase Sean Connary in the 1987 movie The Untouchables, “Here begins the lesson.”

When I was in high school, struggling through more than the average high school student’s dysfunction, I had an English teacher with the remarkable gift of invitation coupled with accountability. She accepted nothing less than my full capability, and she accomplished this by paying attention to the details of life that were crashing down around me at the time. She taught me to use my failures as opportunities. If I turned something in late, she nailed me, if I wrote beneath what she perceived I could do, she made my papers bleed red as only a skilled English Teacher truly knows how to do. And in the process of holding me accountable, she also invited me to become more than I wanted at the time—“Come and see me after school, and we’ll talk about that.” At first I didn’t, I’d blow her off. “Yeah sure, maybe tonight.” But she just wouldn’t take no for an answer. When I didn’t show up after school, she would somehow mysteriously appear at lunch in the hallways where I was hanging out, “Hey, I need to talk with you about that last paper you turned in.” Slowly, she reeled me in, hooking me with intellectual challenge—“I was reading this essay, and I thought of you, why don’t you give it a look and write about it?” She had the persistence of a woman possessed with a mission, and she focused her considerable energy on the children of her community. She was brutal, kind, a friend, a sister, a cunning and brilliant woman who just wouldn’t let me slip into the mediocre quiet and addled confusion that I thought I wanted. She insisted that I be much more.

And of course there were the music teachers with whom I studied. Strongly opinionated, personally flawed, artistically brilliant, extremely varied in their aesthetic judgments and tremendously demanding of everything I might offer, they pushed me into arenas that even now I have difficulty believing. I learned to balance their expectations in ways that forced me to make unified sense out of their extremely disparate demands. My music education was one that left no choice in the construction of a unique, artistic persona, mostly because I had to reconcile my equally brilliant teachers’ vastly differing values. More importantly, I learned to read the artistic and performance requirements of any given situation for what was actually present, accounting for the forces and resources that were available rather than for those I ideally thought should be brought to bear on the musical challenge of the moment. If I was stepping up to sing with an orchestra, I had to learn to reconcile my voice teacher’s expectations with the conductor’s musical interpretation whether either was consistent with my vocal capability or not. And I had to do this knowing full well that both would be offering me their loving feedback at the end of the performance, probably none too gently. What I learned was that each had a perspective, a frame of reference that informed their expectations, and there was no argument about which of them was right and which was wrong. They each were totally correct and justified in what they taught me, expected of me, and pushed me to do. It was just that the two (or sometimes three or four or five) were diametrically at odds with one another. And when I would try to point this out, each would invariably say something like, “This is art. You think it is easy? Figure it out.” Laid into this musical context was the significant teaching that reconciliation toward a vision larger than any one person can hold, is the stuff of life, and if I could just figure out how to do that, there would be a really beautiful moment somewhere in the process that no one truly anticipated.

These were lessons that were profound in shaping me as a teacher, yet early in my career, I misapplied a number of the lessons above. For example, I believed that if I focused solely on success, kids would be successful. I structured my classrooms to avoid failure. I placed success, even if it was just a drop in the ocean, at the top of my teaching priorities, remembering how my own success had spurred me on to greater things. And later on, I sought to teach the power of a compelling vision, believing that in such presentation would be a smoothing over of the differences that come with the naturally disparate points of view present when two or more humans occupy the same space. I remembered how, in my own performance preparation, I could reconcile conflicting demands through my own interpretations. I thought that what I had learned in my artistic training was how to make conflict disappear through a higher plane of performance and aesthetics.

Now, I am enrolled in the most challenging education I have ever known, with the cruelest yet most profound instructor I have ever experienced. Instead of a focus on success, I must deal with inexorable failure. Instead of reconciliation, I must accommodate the destructive elements that now come crashing in–sometimes moment-to-moment—as my body fails. For above all, ALS is about massive failure, and ALS is hegemonic to a fault. The performance demands are significant—I must learn and relearn how to do more with less, to rely on intangibles such as faith and breath when faith is buffeted and breath gets shortened by the most mundane of activities. I must learn to put my hopes in the love and support of family and friends, reversing the beloved role of eternal caretaker and dependable rock. It is a humbling lesson. Most of all, my new teacher has starkly made me see that real living is not possible without acknowledging that each moment, death stares you in the face. Talk about reconciling disparate information!

OK, now don’t get upset, for I want to name a few things that get turned on their ear by the great teacher with whom I am now engaged. Let’s start with success. I wonder if I would not have been a better teacher by focusing on creating a classroom environment where failure was the expectation, but the love and care that went with the failure made reengagement, resilience and persistence non-negotiable. Above all, I now realize that what my former teacher taught me was to be persistent. She was! She just wouldn’t let me slip through the cracks, and she never lied to me about meaningless successes. She pointed out everything I was doing that didn’t live up to standard. By truthfully evaluating my performance, and by not letting me disengage, she showed me how to work through my failures. Now, in a time when dropout rates are estimated to be between 25 and 30% nationally, wouldn’t resilience and perseverance serve our children much better than falsely structured success? Live, and you realize that you have to persevere, to pick yourself up, even when you cannot stand. I wish that I would have allowed more failure, and communicated more love. My new teacher points this out to me every single day. All of us will experience failure, loss, utter despair many times in our lives. It is whether we have the resilience to learn from these experiences, whether we have the strength of character to come back with persistence that really determines our success. So my former teacher was a character builder, and my current teacher insists on strength of character, and I wish I had learned this lesson earlier.

Even more important is the lesson of reconciliation. All human beings come to a given place with their own experiences having shaped the person they are and the beliefs that they carry. It isn’t about finding reconciliation to sweep away the differences and challenges. It is about a life that accommodates the fact that diametrically oppositional forces must occupy the same space. The artistry is in moving past that fact and finding a way to accommodate these differences without letting them kill you. It is, in effect, the ability to take the termites and ants and all the other creatures that you think are undermining the structural soundness of your house of existence, and incorporate them in a way that they become integral to who you are and how you do things. I cannot cure myself of ALS, I cannot go back to my pre-ALS self, but I can accept its presence as real, rebuild myself with that understanding, and move on. Not so much reconciliation, this is actually the accommodation of life that dis ease requires. That is a hard one for me, but it is why I have not allowed myself to “fight” my dis ease. Instead, I have learned to embrace its requirements, to move through its limitations and still be who I am. I admit that the lesson is not completely learned, but this is the struggle of life—to accept it on the terms it gives you, whether you asked for terms or not.

I started this reflection apologizing for indulging a need to discuss teachers and teaching. In so doing, I realize I ought to apologize to all of the great teachers I have known for being such a willful student. I apologize that it took one more teacher for me to actually get the lessons now that they sought to impart so many years ago. But the fact that the lessons are still there is a testament to their genius. To have given such a profound gift is artistry and science and faith and reason to the highest exponent imaginable. I can only name them for what they were—Teachers, and I can only hope that in some paltry way, I finally got it right.

And in so doing, I can quote Sean Connary rather than paraphrase him, “Here endeth the lesson.”

O Fortuna

Last week, Ev and I took dear friends to THE Thai restaurant in town, and then to experience the final concert of the Minnesota Symphony Orchestra season. Were I to use all the superlatives I could to describe this concert, you would think my description way over the top. Suffice it to say that the meal was spicy yet discernable, the playing of Appalachian Spring was sublime, and Carmina Burana was wildly sensual. You probably know the opening of Carmina—“O Fortuna, velut luna.” It has been juxtaposed to everything from movies to beer. But this night, it was tied to its roots, and we came out of the evening feeling giddy and inspired by the artistry of a great symphony orchestra.

Artistic training is great preparation for dis ease management. Pushing some part of the aesthetic-technical envelope is a real part of artistic experience. Through both failure and success, it is discovery of just how far you can go before you can go no farther. No matter how good you are, if you have come to your artistry through honest effort, you are keenly aware of your limitations. You know through practice just how you need to approach that next high note or that overlong one-breath phrase. Visual artists know the limits of their media, gauging fail-points in metals or weaving textiles beyond the strength of the cloth. Artists know the limits of their own techniques. Skilled artists learn how to turn their public’s attention to where they want it, to disguise their own technical limits through aural or visual sleight of hand. The arts are about balance—symmetrical and asymmetrical—and their lessons are not lost on me in the dis ease adventure.

The artistry it requires to focus on making a good life, while at the same time testing the limits of one’s technical ability, is dis ease management at its deepest and most elemental level. I keep rediscovering that every coin has two sides–for every moment that I shake my fist at God, there is the moment of “be still,” and for every time that I fear the great known future, there is the hopeful present that says, “This isn’t so hard, you can do this.” Herein is the trick that artistic expression has taught me. Human meaning is not an either-or proposition. It just isn’t that simple.

Ev’s beloved father, as he worked through the knowledge that his kind of brain cancer really only gives you a hundred days once it is visible, showed us an artistry in life. I remember how the cancer uncovered a remarkable part of the man, generally kept hidden by 1930’s ideas of what a man was. Suddenly, in the middle of the night, when sleep would not come, he revealed the 12 year old, helping his family survive the Great Depression by running liquor to local speak-easies. I could almost see his breath in the cold Montana snow, struggling to cover his tracks from the stills to the streets. Or in the fog of radiation treatment, he became the young Navy man, still standing on the deck of the USS San Francisco, still feeling the sea breezes in his face. Sixty-five years after surviving Pearl Harbor, he used the gift of survival and built a life and family of which anyone would be proud. Even though he wrote some of his story down, it just wasn’t the same as hearing it directly from him. In retrospect, I see his artistry in the face of dis ease.

Life with dis ease presents technical challenge, usually ignored until we consciously face it. For some, it is a relationship that careens out of control until it flies over a cliff and is dashed to pieces in some canyon of despair. For others, it is the quiet yet insistent winding down of their physical or mental abilities, until they look into the mirror one day with no recognition of the image that is staring back. For me, it is the twitches of muscles decoupling from the motor neurons that control movement and desire, as my physical gait becomes the shuffle and totter of listing posture and fatigue. These are the technical limits of dis ease, individualized yet collectively shared, coming to each one of us in their own way.

The trick is to divert the technical challenges into meaningful, human space. It is the task of the artist. How many of us have experienced a significant relationship painfully coming apart, only to find unity in the discovery of our own inner strength? There is the way that my 89 year old grandmother handled her own dis ease. Her body was so racked by arthritis and age that she would have to stand from her chair at a 90 degree angle and then slowly lift herself up to a standing position. “This is a lot more painful for you to watch than it is for me to do,” she would say to us, and with that humor in that moment, she became the most graceful person I had ever known. And of course, my brothers and sisters in ALS carry such fervent hope for others, even as their own hopes for treatment and cure dim. They encourage and reach out through cyberspace, when their voices have been taken, to urge others on while still early in their own dis ease process. “Be realistic, but know there is more than despair,” they tell us.

These are the works of the greatest artists of our time, and these artists tell us that dis ease is our fate, but not our fortune.

I recall an image from my old normal as I seek the artistry required to keep myself in a good space. The image comes from the workouts I used to do when exercise built capacity. Part of my workout usually involved standing on a bosa-ball, a crescent surface filled with air and similar to a half-ball. The bosa forced me to simultaneously maintain balance while performing some strength enhancing exercise. Now, the artistry of dis ease is its own bosa-ball, only without the benefit of spotters, and I do it for the sheer experience of not falling off. It is the mental balance I must strike, even as my physical balance diminishes. It is learning to meet physical challenge with mental toughness, to meet grief with joy, but also to meet hope with stark realism.

Just like the sublime and remarkable performance of a great symphony orchestra, each of us is called to find our own life-artistry. There is always a technical challenge beyond our ability, but the art is in the knowledge of our limits, and the other skills we continue to develop so that what matters is the beauty we can bring forth. Cyclical, just like Joni Mitchell sang it, “Death and birth and death and birth and death and birth,” it is how life goes. I believe that there is an artist inside each one of us, and that in the end, it will be our greatest artistic challenge to divert the audience from the technical limits, and inspire in some way a meaningful moment.

I don’t know if I will ever hear Carmina Burana, fortune waxing and waning like the moon, with such intensity and meaning again. Ultimately, the symphony is symbolic of the great artistic adventure, best shared in life and love, death and birth, with a little philosophy, and a lot of mental discipline.

All of us can do this. We just need to see the artistic within our fortune–waxing and waning–like Carmina.