That Which Does Not Kill Me

As expatriates living in Egypt, we walked a fine line between the laughable and the ludicrous, sometimes within seconds of each other, and often in the same situation. With so many possible stories from which to choose, I hope you will indulge me in using the local beer – Stella (not to be confused with the Belgian Budweiser) – to illustrate. Stella came in oversized bottles, green or brown, that had to be held up to the light in order to see whether “floaters,” usually some unfortunate cockroach seeking an early sample of the brew, were present. And more often than not, the carbonation had seeped out from an improperly installed bottlecap. Drinking Stella was at the very least a question waiting to be answered, and sometimes it became a great adventure, more than anyone should have just for the sake of drinking beer.

 Local entrepreneurs played upon the quality control of Stella beer. They developed specific fashion lines for the expatriate communities so that two extremely popular T-shirts sold in our ghetto environment were Stella – inspired: “Stella Beer – 10,000 Cockroaches Can’t Be Wrong!” and my favorite, “That Which Does Not Kill Us Makes Us Strong – Stella Beer.” Who am I to argue with burgeoning capitalism?

From my dis ease and ALS vantage point, “That which does not kill us makes us strong” garners a much different meaning than my interpretation of 25 years ago. As I look back at my old normal, the saying might actually be one of the primary stanchions on which I built a major part of my life. “That which does not kill us…” smacks of running at the speed of light right up to the edge of personal disaster, just to see how long you might totter before going over. A false implication of immortality exists in the saying. For many of us, “that which does not kill us,” actually becomes “nothing will kill me, and I will always be strong.” It only takes the kind ministrations of dis ease to contradict the immortality and blur the meaning.

If you know dis ease, then you know a confluence of negative events can be deadly. It can happen very quickly as in a horrible accident where one poor decision cascades into fatality. Or it can happen in slow motion; a floppy foot, a couple of falls, a lump, a hematoma, a diagnosis. It isn’t the speed of the event itself, it’s the confluence, and at some point no matter who you are or what the circumstance, it becomes too much to bear, overwhelming your humanity into a new existence marked by your certain demise. But our human existence is also marked by denial. Since the time of my diagnosis, well-meaning people have shared that “God only gives you what you can handle.” I usually thank them when they say it, for I know they mean to offer me comfort. But such a statement is one that obfuscates our human condition. Something out there will kill us.

This past week, I Skyped with a friend with whom I had not spoken for years. Our conversation, framed in connection and catch up, found us trying to explain in the space of an hour some of the most meaningful events in the time since we last saw each other with all of the success one might have teaching nuclear physics to a three-year-old. Both of us struggled to overcome language and context and emotion and time, bravely seeking to re-create connection. Each of us had a story to tell about our kids, and that story contained real fear – palpable, tangible, sweat streaked and tear stained and just distant enough to allow us to relate the stories in straight tones, yet present enough to still invoke the powerful fight or flight that only a parent experiences. I think that one of us even said, “That which does not kill us…” in an attempt to rationalize tough times in the lives of our kids and the fear we both carried.

We are both old enough to know life’s great lesson – it will always give you more than you can handle.

It isn’t difficult to apply what we both know to my present situation. I have never had a teacher like ALS – so demanding, so exacting, so focused on the outcome. ALS schools me to remain psychologically upright even as she lays me flat. ALS requires me to strategize independence, even as she diminishes my body, forcing me into dependency I neither seek nor want. ALS reveals gradual and sudden loss – pure, heart wrenching, gut scalding. It might seem her real lesson is, “That which does not kill us, actually will,” but I keep learning that one must not end with the obvious answer. The depth of my teacher is far greater than being simply overwhelmed.

We are taught to believe that we have control over things that we do not, that we are personally responsible for such control while life belies the fact. Paradoxically, we know our control is miniscule, dwarfed in its comparison to God the universe and everything, so it might seem our only choice is existential angst. Deeper learning seeks reconciliation, so that through the requirements and diminishment and loss, ALS whispers to me to have faith; the lessons are deeper than the losses, each loss is a teachable moment, an opportunity to grow until growth is no longer possible, a roadmap to the ultimate outcome, a faith in more than the fact of loss. ALS quiets the noise revealing human music and God singing in great statements, credos of faith that we are here in the moment with no influence on the past, and a future always unclear. And if we choose we can go it alone, or we can embrace our big messy human condition together in the struggle to understand a world that of necessity must always be just beyond our comprehension. The noise abates, and what is left is a teacher’s purity.

Open your heart. Breathe in faith. Embrace your humanness. Glimpse God. Sing.

We will always be given more than we can handle. We will always have the choice as to how we respond – collectively, singly, the great choral hallelujah, the quiet solo aria. There is space for both so that in the end when we must go gently alone, the gift becomes apparent if you have eyes to see or ears to hear or skin to sense. That which makes us strong is what we can shoulder in concert, in tryst with each other, blessed by the communion of saints and sinners with lusty voices trying to go it together until we are released into the magnificent universe to rejoin that which we cannot understand with one, great, hymnal, solo aspiration – a final ah.

I think you could drink to that, although if it is a Stella beer, you might want to check for floaters.



When Ev and I were 26 we moved beyond United States boundaries to Norway. We had with us our 14-month-old son David (Jon would be born three years later in that oh so special country), a thirst for new adventures and the fire in our bellies to become great educators, the teachers we wanted to be. And within a week, we had met so many others like ourselves, green and young and excited, as well as a few people old enough to be our parents, but still excited nonetheless.  And we knew we had made the right decision. Within two weeks, we began to recognize the wisdom and life experience in some of those our parents’ age, and we realized that all the young teacher energy, all of the young teacher synergy, could not hold a candle to the force that was one of those couples, John and Ruth.

I’m not sure what it was exactly, but I think our respective families would say that we fell into each others’ lives at just the right time. Always respectful, always mindful and full of enthusiasm, John and Ruth became to us the parents and grandparents we ached for so far away, and likewise we became the children and grandchildren close by, when their own children were equally distant as our families. If that were the end of it, it would have been a beautiful narrative, a time together defined by circumstance and geography and travel and adventure. But there was something else between us, something that allowed us to turn each other free from living in a place we all had come to love, to living in new places that we knew we could share in some endeavor greater than what we had known before.

You see, in our story, we were meant to find John and Ruth, to interweave our lives with theirs off and on but always keeping track.   Each of them brought something special to any situation shared. John loved a good story, good food and good company. Ruth brought an eye for the beautiful, an ear for that which was the most lovely in human interaction, and most of all a sensibility that every moment would be a special moment if we just paid attention. I could speak of each of them for hours, but at this time I need to focus on Ruth, beautiful and sensitive and grounded Ruth.

There are so many things that I could say about Ruth. I know that for every story I would tell, sons and daughters and friends and neighbors and acquaintances and first timers would nod knowingly, eyes lighting with the joy of being in her presence, inspired to share other stories a hundred and a hundred times over. I will share two, knowing that there are thousands.

When we lived in Egypt, John and Ruth  visited us at our home. I have never seen any one person wring so much out of one week in one place as Ruth in Cairo. One of our friends had concocted a 24 hour Sinai tour that he would give for the not so faint of heart, and he and Ev decided to take John and Ruth out on this grueling, no sleep circuit. It began at St. Catherine’s monastery at the base of Mount Sinai. One would awaken to be on the paths by 2:30 AM so that the sunrise could be experienced from the top of the mountain. On their way back down, Ruth was stopped by a man from Japan who asked her politely her age. When she told him she was 66, he just shook his head as if to say, “how could I ever possibly keep up with someone so fit?” What he didn’t know was that two hours later Ruth and John would be snorkeling in the Red Sea and then taking time out in the desert looking at rock formations. And as we all know, Ruth’s hiking only got better with age.

A second story is a little more personal. When Ev and I were in our third year in Norway, Ev miscarried. We were devastated. In came the community led by Ruth, not so much to make it right or to offer any kind of silly observations like, “God must’ve really wanted that baby,” but instead just to offer company and attention and a meal and assurance that while we were disappointed and sad, it would get better.  I know there are much more special stories about Ruth – stories of invitations into homes of people she had just met, stories of friendships maintained over years and years and years in Libya, stories of parties and gatherings that were so right that one could only marvel at the woman who had thought through the remarkable detail of these social occasions, and most of all, stories of a woman in love with the Middle East. But the Ruth I know is the Ruth who understands the joy of being, that sometimes being is all we’ve got, and that is a powerful story.

I suppose that there is nothing I could relate that would add to this beautiful story of Ruth except that she taught me how to keep a sense of wonder, to be brave in times where self-consciousness ruled, to value the beauty in the individual human no matter who he or she was. Ruth encouraged me to be grounded, feet firmly planted in my history both good and bad. Ruth cheered me to soar with wings opened to the sun and wind and rain of life’s wellspring. Ruth could laugh in a way that lifted my heart, and two sentences later cry tears tinged with the joy of  life fully lived. And she freely gave the knowledge of just how one does that — so that I learned to laugh in a way that lifted my own heart and to cry tears that told me that life lived in wonder and awe was my privilege.

After I was diagnosed with ALS, John and Ruth were two of the first people we called. I loved how matter of fact they were, how easy they were to talk with, how they focused on a healing future, how they wrapped their prayers around Ev and me. After our first visit at Mayo in which my diagnosis was confirmed, we scooted over to La Crosse to see them. And there was Ruth with a special meal, a place of warmth, healing for the unhealable, with laughter in the face of fear, and with tears that soothed confusion in reassurance that love is greater than all things.

And this is the most important thing that Ruth’s life teaches me. She was and is and always will be the greatest reassurance, that love stands when all else falls, that love is present when presence is remote, that love is the best way, the only way to reach out beyond the confusion of what it means to be human, that love is the holiness humans are granted in proof of God.

When Ev and I were 26, and we moved to Norway in search of the great adventure, we never believed that the great adventure would be eternal love shared, but that was our discovery.  And for us Ruth will always be that eternal love.

What Does Success Look Like?

On Monday evenings, my son and daughter-in-law take me to adaptive yoga at the Courage Center. It is a remarkable experience; you have never seen so many challenged bodies in power wheelchairs guided in yoga by such thoughtful teachers. The founder of this adaptive yoga is a man by the name of Matt Sanford. I will not relate here his life and calling; he tells his own story far more profoundly than I possibly could. A masterful teacher, Matt’s story is unapologetically human.

Matt teaches from his wheelchair, asking from us a practice of yoga that is thoughtful and demanding.  He stops and corrects and questions and observes, skillfully engaging each of us individually.  Matt freely admits little experience with ALS, so it should have been no surprise that he  asked me, “What does success in yoga look like?” I was in the middle of modified sun salutations, my son and daughter-in-law on each side of me raising my arms and helping me to drop down while lifting my chest, drawing in a centering breath. My eyes were closed as I sought memory of the motions required, forgetting that there was something of equal importance outside. I stopped. I thought. And I answered, “I guess just being, here, in this place is success enough for me.”  It wasn’t quite what I meant, but it was the best I could do at the time.

Silence, then, “I guess I wasn’t expecting an answer quite on that level.”

I’m not sure what he meant, but I know the experience of asking a question and receiving an answer from a different place.  He asked the question two more times that night, each time causing me some internal turmoil.  After all, ALS and success are not often tied together, but the struggle was instructive and in many ways symbolic of a week that was.

Last week, I experienced one of the highest highs and one of the most humbling lows since my diagnosis. And somehow, the consideration of success coming out of my yoga course, in the presence of a teacher who I do not yet know excepting his authenticity, seems meet and right and totally appropriate. Last week, many members of my former church choir showed up to surprise me with a gift of song. Last week I ended up in the emergency room; my non cooperative body further refusing to cooperate.

How wonderful it is to be surprised by song from people you love.  A lifetime ago, we spent such meaningful time together—they put up with my jokes, my cajoling, my coercing, sometimes my overbearing personality, and still found a way to make beautiful music. They gifted me by singing three pieces sung together so many years ago, and it was absolutely divine. They sang so well, incorporating small but significant interpretations that we had arrived at together, echoes of music that still resound within my deepest meditative soul, polishing the sheen and shine on these three choral jewels that were and remain expressions of the beauty and possibility humanity can glimpse through the artistic endeavor.


Of course, I blubbered and cried and sobbed with joy for life so blessed that friends would sing for me.


And there was more to it than the singing, for I had not seen so many of them in years. What a commentary on the pathways of life this was. All of us had been lost and found in life’s ever-divergent paths – children and history and marriage and divorce and new careers and no careers and sickness and health and emotional upheaval and moving on. I wish I would have had the strength to insist they stay the hours until the evening had ticked away one delicious second upon another, but my beloved Ev had forewarned them that my stamina is compromised. And so they lined up and one by one took my hand and talked a little and reminisced a lot and cried in unison and harmony and love and affection, a sacred polyphony of friendship built upon the beauty that making music together spawns.

To see them all, to hear them all, to breathe them in as one would inhale spring after a gentle rain and a drying sun, lifted my heart for just a moment into a place that I know still exists, even though I do not perceive my presence amid those lofty arches anymore.  Thank you Judith and Andy, thank you all – my beautiful beautiful singer friends.

But balance mandates new lows, offsetting such a soaring high.

One of the afflictions for anyone who spends the majority of their time in a wheelchair is plumbing mishaps. The details are not important, except that two nights after the beauty of my choral gift, Ev delivered me to the emergency room of a local hospital, hoping to address the pain and dysfunction of a body that refused to operate normally. By the time I reached the hospital I was physically exhausted and emotionally drained. And over the next several days, the fear of going back and the recovery needed from the physical manhandling that must take place in an emergency room situation was my reality, my raison d’être, my conscious being.

What do you think success looks like now?

By the end of my yoga class the question arose two more times. I was tempted to stay in my ALS space clumsily describing physical progression, cautiously retreating from any activity that might result in pain or damage. The space was safe and the advice was prudent, not profound. But deep learning does not take place in comfort. With one phrase, my teacher opened vistas of possibility that my body might occupy even as physical capacity wanes. With one phrase, my teacher reminded me of the balance and the center when we accept the unity of body and mind and spirit and life. With one phrase, inner and outer, horizontal and vertical, down and up, reflection and narrative opened up the holy possibilities before me.

“You existed before this,” he said.

At the very end of the class that was far more physical than I ever thought possible, at the very end of the week that had left me soaring in the emotional stratosphere and groveling in the ditch of human existence, at the very end of a day that had left me so tired that I was searching for every excuse not to attend my class, I think I glimpsed what success looks like.

In my life, there will be ALS, not to be fought, but rather embraced. Now ALS is me and I am him. He will require all manner of experience that feeds my soul, balances his presence, and moves me on into the next challenge. In so many ways, life with ALS bears remarkable similarity to my life before. It is always about balance, and balance is only achieved on the sharp end of the needle threading its way in and out of the cloth of the task at hand, and binding new threads to old fabric.

Friends sing, and bodies break, and courage is centered in existence before this.



In Minnesota, the weather can turn and change and spin on a dime. At the beginning of this past week–sunny days with temperatures in the high 70s, trees full of color glittering in bright sunshine, and blue skies clear as a bell, glorious to behold–held sway. In less than 12 hours, summer’s last gasp was blown away by blustery winds, and trees once clad in autumnal beauty stood naked rattling against gray, snow swept skies. It is the earliest I have ever seen snow in my life. And the weather of the week symbolized the journey from a day before dis ease was my constant companion to a day where I was lucky enough to grieve the greatest loss thus far. This week, on a day when the sun could not break through, and clouds hung heavy and oppressive in their steely color, I said farewell to my beloved colleagues and friends and began the life that I have sought to avoid for 22 months. On Thursday, I stepped down from the responsibilities of working for the first time in 45 years.

I don’t want to wallow in the causes. Suffice it to say that dis ease has asked me to turn my face to a future that is just a little closer than I wish it to be. To stop working is a statement of physical health that I have twisted and turned and denied and avoided, balancing on a razor’s edge atop an increasingly widening precipice, hiding out until the reality that stalked me had passed by, embracing any and all solutions that would allow me to continue something that felt like life well lived. Stopping work means overwhelming emptiness, blind grief pressing down on my eyes and my heart, light pulled from meaningful engagement and passion and complexity and joy and yes, occasional irritation that allowed me to be in communion with so many people of faith toward some common good. We stood together on behalf of our children, the poor, the vulnerable, those who would require wise leadership, or effective education, or healing counsel. I won’t wallow in the causes.

I want to tell you three privileges granted to me, just three.

On my last day of work, I was allowed the privilege of speaking with my colleagues one more time, a privilege of tears and love and hugs and kisses and the knowledge of just how blessed I have been. On the day that I left, I was granted the privilege of a professional coda–one last restatement of a theme of gathering in which the participants, knowing this was my last day suggested, “We don’t have to do this you know;” respecting my answer, “Please let’s do this according to plan;” fostering one last spirited communion with good people who have the well-being of my beloved college in their bones, allowing a professional punctuation to my too short career. And on the day that I left, one of my colleagues reminded me of a dear friend who had made it his practice to never let a valued educator leave the building for the last time alone. I was given the privilege of facing the end with my remarkable second floor staff, in its entirety, walking with me as I rolled one last time as dean of the college, down the hall to the elevator that would take me to my waiting van below. These are three privileges I wanted to tell you, three.

And as I reread the above, I want to tell you three losses, three losses suddenly clear.

In the past month, knowing Thursday must eventually arrive, I turned my energy and attention with precise, pinpoint focus on the tasks required so that I could believe all would carry on. I turned my energy and attention to the tasks of succession, the last day, moving out, moving past. And I missed beauty and companionship and love right in front of me.

In the past month, I missed the death of a dear brother in ALS. Rob was one who changed the conversation about the dis ease. His postings in the forums were in the thousands, and he exhorted us to take anything we could share, anything we could give, anything that could further the understanding of this insidious sickness and offer it freely in new ways, ways that might not be understood by the research powers that be, but might, with creativity and new methodology result in effective treatments. But even more important was his generosity and his bravery. He took on, in a kind but firm way, the hard stuff of dying. And he chose no extraordinary measures, and I missed his death and the chance to thank him.

And in the past month, I missed the beauty of life lived in the moment, because I existed in the future. I missed subtle hints of physical loss that left me surprised, angry and humiliated as they were suddenly realized. I missed knowing the last time even when the last time was screaming in my face. And when the last times came, I was so focused on the final ending, I missed their beginnings.

Three plus three.

Cathy Wurzer of MPR asked me how I would think of myself, once I stopped working. Perhaps it is my music background, for musicians learn to think of themselves as musicians first, and then what they do, where they do it and for whom as punctuation to the fact. I cannot help but think of Yo Yo Ma. He is first and foremost a ‘cellist, remarkably accomplished in the West’s great 17th through 20th century works, then adding new ears, new skills in Eastern, African, Brazilian and even traditional American genres. And he uses these skills and his most accomplished core identity to venture into new venues beyond the traditional concert hall, so that space and time and music and Yo Yo Ma are one and the same.

Though my musician identity does not deserve mention in the same breath as Yo Yo Ma, music taught me early on to balance the strange conditional tensions between who I am, what I do and where I do it. This is the bizarre walk so many of us are required to walk these days. Each of us brings an identity, a core human to the task at hand. Each of us refines our skills, our capabilities, our techné into some level of more or less competence. And more often than not, we are asked to hold these things separate and isolated from each other. Loyalty to place and colleagues is supplanted by “doing the job,” and the self-protection of a “work isn’t life” attitude encourages us to operate in an unholy arena of siloed selves, where never the person we are, the capabilities we have developed, and the places where we bring these human gifts, should meet. It is no wonder that we feel so disjointed and at odds with ourselves. In the name of something else–profit, power, efficiency, effectiveness–balance is diminished.

My answer for Cathy was based in balance and music and education. I have been blessed to work in a place where identity and capability and space intertwine and become one. I was granted the opportunity to bring who I was, to develop new capacities along the way in a space that changed to reflect the needs at hand, and I became the teacher that I was destined to become. Balance compels me to teach a little when the need arises.

Minnesota weather speaks a past month of knowing the balance between summer and autumn, privilege and loss. Grief’s hint of winter’s death remains raw in my heart.  My future is more real than ever before, for such grief is just rehearsal for the great performance, in spaces where identity and capacity and place are synergistic, where loss and privilege are the blessings of a life well lived. And I will turn my teacher’s face toward the next dis eased space and the next, and hope to God I grow enough to remain balanced in the moments life’s winter will bring.

And if nothing else, I know the path to the final place need not be walked alone.

Labor Day

It is Labor Day Weekend, three days celebrating work, workers, working. In Minnesota, most educators spend this weekend in last minute prep for their upcoming teaching, finalizing lessons, tweaking syllabi, deciding that last activity to make the first class session a little extra special. For me,this weekend requires significant time preparing opening comments for our academic year, trying to put something together that strikes the balance between serious direction and opening year excitement. Today, I feel the tug of the school year calling, and my feelings are complex, a mix of gearing up and shifting gears. Dis ease requires a zipline of up and down energy that is at odds with the labor traditionally channeled into this weekend. But I still find myself working to bring one more beginning into the fray, one more lesson by the great teacher in my life, one more Labor Day in which the labor is rewarded with the prize of anything and everything ALS.

I am keenly aware of the etymology and multiple meanings of labor. The holiday is about the noun, whether we are talking about the person who accomplishes the task, or the task itself. But today in this time of ALS, the richness of labor’s etymological genome is in the verb. To do something with great effort, to totter under the weight of the work seems to acknowledge dis ease’s exacting teachings. Tottering and effort are the honors ALS insists will be bestowed far beyond parsing the meanings between noun and verb.

In these labors, we honor work.

I love the whole concept of honoring work, for work has always honored me. Once I realized how hard I would have to work–for my education, my living, my family, my music, my exercise, even for the intellectual forms guiding my thinking–a life-choice presented itself. Either I could find the joy in hard work or I could resent it, and early on I admit that my disposition toward work ranged closer to resentment. But as I matured, I consciously chose joy for the most part, and I hope that those who knew me, who still know me, remember our time together as mostly joyful, because the work together was energizing. For me, even leisure required hard work. Most people would probably find the level of planning I needed to create a vacation space antithetical to the goal, but working so leisure could occur was a joyful premise in which I willingly and enthusiastically participated. Truly, the idea of honoring work and workers hums like a spinning plate in my psyche.

Up until 2010, Labor Day Weekend was a time Ev and I would traditionally seek to balance the work of preparation with the work of play through long bike rides in southern Minnesota. We rode wonderful adventures in our annual last big bike of the season. Headquartering out of Preston, we loved riding the Root River Trail, especially east of Lanesboro where the trails were ours for the taking. I still hold in my heart a picture of a road weary Ev sitting on the grass in Waylon eating the last ice cream cone sold at the pie shop on a warm Sunday with 14 miles left in an 86 mile day. Later in the ride, we were held up by a Minnesota rattlesnake sunning himself on the bike path, and we flew the last eight miles to Preston like a hot wind awaiting soothing whirlpools and air conditioning, inspired more than a little by rattles and fangs and the irritation of a snake forced to leave the sun for the brush by impatient riders with 15 foot long branches dancing encouragement around it. The last time we rode, it was a time for listening to language we didn’t understand, the last 30 miles with me playing catchup, and Ev thinking I was just being nice. We worked to play, and we always brought home apples and corn and summer’s last melons for that last summer meal of the season. I would cook, and Ev would bake apple pies to honor the upcoming autumn and to fulfill a Christmas promise gifted to our sister-in-law, Hanna.

I have learned through experience that this weekend is a time to get out of the way of the work needs of my one true love. For her, Labor Day carries that delicious tension between utmost readiness, unfelt preparedness, and the inability to predict the full needs the children will present in the first week of school. Of course, within a couple of weeks, she will have the kids pegged–who will need “the look,” who will need kid gloves, who will need coaxing, who will need reins and who will need giddyup. It is a loving endeavor not for the novice or the faint of heart. And I will live vicariously through the stories of delight and weariness she shares, at least once she has made the recovery she needs upon home arrival. There is nothing like the work required to unlock a child, and there is absolutely nothing like a child with the sudden epiphany of new knowledge. Ev approaches this task as the sacred trust it is, and I cannot help but note the light she shines even when she is exhausted from pouring herself into her teaching.

My work focus this weekend is habitual and necessary. The sun will splash into our little den, windows on the east and the south, and light my way through multiple and disparate resources. As I struggle to bring them together in a coherent narrative, reflecting on the privilege I still feel for the task ahead, I must resist the temptation to make this weekend’s preparations more than they are. It may be my last time for this particular work at hand, but it is no more special than years before, and it doesn’t mean this time will be any more profound than any other time when the work was less perceptible for its meanings. I have a habit of imbuing beginnings and endings and last times with greater meaning than they possess, and I need to circle back to labor’s truths–the honest liturgy, introspection, worship–no matter the meanings dis ease projects.

I still strive to bring the holiness of work–of working–into what is coming in the minutes and hours and days ahead. The requirements are not so different from before–constructed focus walking the line between seriousness and excitement–and yet the requirements loom as work for which I suspect I will never demonstrate complete mastery. Work is not so much about labor but life, and life is not only what we have done, but how we do it. When dis ease overwhelms, reframing its effects is always helpful. This week, the future is dis ease work, hard work that requires all I have learned from labor’s lessons in teaching, leading, artistic expression, spiritual knowing. It is a future that requires the ultimate in work ethic, with no space for any less than all in. I hope I will meet its challenges, engage its possibilities, realize the person I have sought to become, even as physical functions become impossible, abilities no longer realized except in the challenges they present. Labor is nothing more than the faith that what will be is ultimately joyful, even as diminution seems to call for sadness. I know this mystical presence, for it teaches me that labor is not stern control, but chaotic love.

And in the end, as with all our labors, life has this odd ability to work itself out.

Summer Whispers

I took a vacation – really, a staycation – spending the vast majority of my two weeks off at home. This was a very different experience for me, for even with last summer’s realization that ALS had the upper hand, I still tried to get us out of town and far away so work could not intrude (or at least I was too far away to do anything about its intrusions). Such hasn’t been the case this summer. At home, each morning I rolled into our den, opened up the computer and dared my work to get into the face of my time off. Admittedly, this lack of boundary was a subconscious recognition that ending my time as a working adult is now plainly in sight. Maybe secretly it was the desire to continue the engagement, even when I was supposed to be off. On the other hand, the new logistics of travel (mostly associated with bladder capacity and the need for a Hoyer lift), also dictated the appropriateness of a staycation this year. So this summer’s vacation has not been one of travel’s explorations, but discoveries of inner thoughts and feelings and realizations and hopes.

The algebraic formula for Summer 2012 clearly graphs as hills and valleys. One week, ALS is nothing more than just another life adventure. The next it is a cascading series of physical failures. Joy and sadness are constant companions on this roller coaster, heightening the experience of peaks and troughs. There are days where I look at my condition and think, “I’ve got to get on top of this. I need to do more to stay ahead.” There are other days where such thinking seems absolutely futile, a waste of energy, frittering away time on details wrongly focused. Like so many who play out the normal process of aging, I have realized what is to come. Like the few who have ALS, my epiphanies take on the urgency of too rapid physical loss–Bruce with ALS Version 3.0.

Apparently, all things must pass.

Whispers of the future of the work that I love–the future of my college, in context of the future of my University, in a time when the future of higher education in America is a mystery–loom large. It is a compelling call, one that I wish I could engage into the next iteration, and it is no small thing to admit that the needs of participation in the upcoming dialogue lie beyond my capability, my capacity, my energy. Like so many institutions, we are caught between the desire for excellence and the need for efficiency, making us a target like any other consumerist entity–eyed by robber barons, ripe for takeover to be chopped up for yield, ideal for new narratives about the virtues of competition by lean for-profit companies who build easy myths that they can do anything better, education as commodity, markets über alles. Effectiveness and efficiency are not mutually exclusive, but they have become diluted by bottom lines – profits are the final arbiter, conservative and liberal do not share common bonds, unlimited growth can be achieved, there will never be a clear definition of what is enough for the well lived life. Higher education carries with it a specific responsibility less and less clear in the minds of Americans, its role as the great equalizer now seriously questioned – sometimes for very good reasons and other times for reasons spurious at best.

Somewhere in the conversations we have deliberately or inadvertently forgotten how seductive ease is to human desire. Somehow the work of the mind has become divorced from the work of the hands. Somehow the idea that ideas are not practical and practicality is the greatest measurement of value has wormed its way into our collective psyche. It is our national version of dis ease, the artificial exclusion of intellectual from artisanal, thinking from doing, performance from preparation, theory from practice—these deliberate dichotomies valued by the pundits and politicos so that their efforts to make these concepts understood below a fifth grade level can divide us, human from human, so they can scavenge the flotsam and jetsam of our confusion, while we remain disheartened, dis eased in our own space. Every good athlete and musician knows the intersection between mental preparation and physical performance. Every good teacher knows you must not make things too easy. Ease is best for propaganda, not education, and once people expect ease, they become less discerning, less creative, less human. It is a question of balance, and the balance right now is not fair.

ALS tears down all old frameworks, dis ease insists upon adaptation. Summer reflection is more than the context of work. Family whispers.

They are my true loves, and my placement in their midst as self-appointed paterfamilias no longer feels easy. Distinct markers redefining the evolving me are clearer. There was a time when I defined myself as the safety net for my sons, my partner Ev. That is no longer possible for I have neither the resources nor the energy for such backup. Our knowledge of each other shifts, crawling into our superficial awareness or hanging back just out of reach of conscious discernment. But we know.

A man who cannot dress himself is a care-receiver, not a caregiver. A man who each day must check the proverbial gas tank, mentally running through lists of new or potential physical loss– increasing reliance on others for the most basic needs, seeking safe havens that do not test corporeal or psychological energy—must leave behind old assumptions based in past ability. All of this is more and more obvious, barely spoken, gaining the traction of consciousness. And what remains is still me –love and history, good and bad, humor and sadness, musician and athlete, intellect and artisan, foolish novice and wise veteran– none of this is lost. It remains a powerful binding force holding me, us together. We persist but for how long? Will I see the paths my children have chosen, flowering into the human beings I only imagined at their births? Will I see their children, carrying on in a world more globally robust yet less locally connected? Will I see my 57th or 58th or 60th birthdays? Will all of this so totally break us that we end up grim and greyed by the experience? Will we continue to meet the losses with new capacity for grace?

Summer vacation is a treacherous time, especially when time lies heavy on your hands.

In Minnesota, August brings regret and anticipation. We look back on the heat of the summer with our big summer plans and sultry anticipation of the good times to come, and we regret that we did not fulfill what seemed so possible in June. But we also look forward to autumn nights, chilly and crisp and cold, knowing that there still may be one or two 90 degree days left, enough to grab another inch of summer to warm the heart during the gray-blue cold ahead, appreciative of the stark insights winter begets. Reflection and discernment are not exclusive to summer vacation; they just focus into warm streams of consciousness at that time. There will be more realization to come, for dis ease insists upon it.

And I want to be there, if only it will have me.

The Footprint

In the week after graduation, the week after a three week push that would have stressed me in my old normal of physical health, this body has just enough, just the minimum, just barely the ability to summon the strength to speak, to eat, to sleep. It is my look at the wall, lean the chair back, just go where thought goes time. And my mind, my mind is swirling, not from getting through but from getting through with the joy of beginnings and endings and understanding informed by so many commencements and graduations. Intertwined with my own dis eased matriculation, disengaging this body bit by tiny bit, a delicious painful bittersweet fatigue struggles to compensate through renewed presence in the here and now. I get this way, this tired, this vulnerable, and I start over-thinking the endgame, forgetting the moment, hooking into ALS humanness, forgetting to savor this place as the steaming cup of coffee or sweet piece of fruit that it is. No more with the religious, the metaphysical, the Buddha, the godhead, Allah, Krishna, the Dao, the Christ, the mystical. This week is just pure and raw human compensation, specific in its consequence, peaceful in its appearance, troubled by questions of affect and effect that inspire a fool’s search for ancient footprints left in shifting sands of existence, present only for a few seconds between wave upon wave upon wave relentlessly smoothing life’s shorelines. In the week after graduation, we humans ponder the footprints we leave, whether the tracks are in mud or sand or snow.

I think and in such thought, I am not unique.

At this time of year, commencement speakers toss concepts we have never experienced into the air like mortarboards with tassel tails. Words like forever, immortal, eternal, always, wing through the ethers even though by all available physical evidence, we can only discern finite, temporal, a whisper in the winds of our overarching mortality. In the month of May in schools and colleges everywhere, talk about footprints in the sand, making your mark, changing the world for the better, becoming the best person you can be, echoes through liturgies of ending-beginnings. I have heard every commencement exhortation, baccalaureate and post-baccalaureate speech, ever charging graduates to use their academic ending as a new life beginning. I don’t begrudge these moments; there is a sweetness to them that defies the grudge. But I have heard enough of them to know that they rarely if ever hit their mark.

At this time of year, high school students assure each other that they will be friends forever, celebrating the history they have accrued together, blissfully unaware most of them, of the unbelievable challenges ahead. I often ache with bittersweet emotion at the loveliness these sentiments express, for each symbolizes time together, insufficiently savored, too often rushed as something to get through, too soon susceptible to constructed mythos, so that the real legacy is lost beneath the layers of life’s specific requirements, duties rather than opportunities, overwhelming the soul with responsibility and worry and love unperceived. I pick at that ache as a crusted scab, partially lifted by additional scrapes, weeping a little at the disturbance, knowing not to rip the entire covering away. And in spite of my best intentions of living in the moment, of having seen it all before, commencement causes me to hope for meaning, legacy, marks, footprints I can no longer leave.

It is the most natural thing in the world to ponder the meaning of one’s own life, to ask what might be the “lasting” effects of one’s time in this world.

Legacy is considered by the great and ordinary. It is not unique to our time, but resides with all times. “Look on my works, ye mighty and despair,” wrote Bysshe Shelly in Ozymandias. In rereading Doris Kearns Goodwin’s Team of Rivals in the community of my doctoral students, I was struck by Abraham Lincoln’s worries that the founders of the nation had met all the meaningful challenges in their time, leaving little to do to distinguish himself in his own. “Every man is said to have his peculiar ambition,” [Lincoln] wrote. “I have no other so great as that of being truly esteemed of my fellow men, by rendering myself worthy of their esteem. How far I shall succeed in gratifying this ambition is yet to be developed.” And Kearns Goodwin doesn’t limit her observations to Lincoln. She notes that Alexis de Toqueville saw in Americans the determination to raise their station in life so that they would be better than their fathers before them (remember, she is talking about MEN in the 1800’s). Knowing what Lincoln and the nation would face, their concerns now seem quaint and unnecessary. But they indicate our human need for legacy.

Great effort is invested in meaningful legacy. We build buildings, sponsor events, render art, even go so far as to bury our dead so they won’t decompose. In the academy, we invest meaning through honors–cum laude designations, recognizing and congratulating the best academic work, implying that in their brief history, our alumnae have created lasting testaments. We have the fading pictures; the black and white wheel treads of times gone by to prove the point. We name the edifice as physical manifestation of our desire to remain. The representations of times gone by, everything from pre-civilization fossils to Stravinsky ballets is a physical act, shaping the energy of the environment into recognizable forms, intentional or chance confluence perceptible to later generations as the legacy that will distinguish us. We invest enormous resource in the endeavor.

It should be no surprise that I am thinking about the footprints of my own life. The union of dis ease and commencement make it impossible not to reflect a little bit. Knowing that footprints are physical can trouble even the most mystical of souls, and for me with ALS, as my physical capacities diminish, I find footprints harder to discern. To quote the great 60’s philosopher J. Hendrix, “Castles made of sand melts [sic] into the sea eventually.” The Christ knew this, preferring stone foundations to sand in his metaphors. Having seen too many places in the world where the stone has eroded into weirdly carved structures, hinting only a little bit of the mountain that was, I put little trust in such physical manifestation. Perhaps the most troubling dis ease of all is the inner fear that all of our footprints will yield to fire and water and wind and earth.

Yet, in my heart, I know that footprints exist, the sands shift into lasting effects of the human that was, is and shall be. As a teacher, I have peered into the hearts of children and adults, and I see them projecting forward the sum total of their humanity come before us and yet to come. I have seen humanity’s goodness and its evil, and how each of these imprints on the soul of a child. And all of it is the resulting mark of our mothers and fathers, friends and neighbors, known persons and unknown, back and back and back, and into the future beyond. Even as I watch my sons struggle to find their place, my daughters in law creating their own legacies, my students seeking the truth that works for them, my true love gamely seeking the key to the next generation’s ways of learning, I know that somewhere there is a footprint of what is to come; not some fossilized insect trapped in amber, but a living energy projected forward. The mark is indelibly left on humanity’s future, and it will echo down the ages until time and space are unable to escape the black hole gravity of their own hubris.

And then there must come commencement and in that commencement, the footprint of one lost to the ages.