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.

No Posting Tonight

Dear friends,

If you have paid attention, you know that the past three weeks has afforded me absolutely no downtime at all. And today, I am just too tired to put together anything that is coherent. So, I will look to see what might come through this week, but I ask your understanding. Sometimes, the swirl and the fatigue are just too difficult to overcome.

Going the Distance

In W.P. Kinsella’s Shoeless Joe, a book better known for its movie spinoff Field of Dreams, the line “Go the distance,” takes on both symbolic and literal connotations. The book’s protagonist Ray is called to accomplish a holy trinity of tasks—build a baseball field, fetch a literary recluse, and bring the echo of a country doctor long dead but still needing release from this world into the holy act of baseball. Ray defies all common sense to accomplish the tasks. “Going the distance” outlines liturgies of connection, sundered and besmirched by profane deeds, misspoken longings and unfulfilled destinies; all to be reestablished to quiet the fitful rumblings of the universe sleeping uneasily beneath the cornfields of eastern Iowa. “Going the distance” is the ultimate outreach, and the result is the unification of Ray’s own fractured psyche. I know, it sounds like a reach, but it is a delightful book, and “going the distance” has had a special meaning for me since the 1982 publication of this little gem of sentimentalism and religious haj.

This week, Ev and I symbolically and literally went the distance as we made the quarterly pilgrimage from Minneapolis to the Great Cathedral of Mayo, closing sacred gaps in our knowledge as to what comes next and next, and simultaneously revealing chasms in our understanding of how the ultimate destination creeps slowly and slowly a little closer. Mayo always lives up to what John Dewey would call an experience. Symphonic in scope, driven in tempo, Mayo dances the distance between the unaccomplished and the fully realized with the efficiency of a last New Year’s Eve waltz. The ALS Clinic is its own particular composition, a Bartok Concerto for Orchestra—an elaborate work accomplished with virtuoso solos from each section of the ensemble with riffs on dis eased melodies by the neurologist, speech pathologist, dietician, physiatrist, social worker, ALS nurse, and (sometimes) occupational therapists from the ALS Association. All of this takes place in the space of 4 hours, though it seems like a thousand mile sprint.

Dis ease and the high liturgies of medical science cannot help but shift the meaning of going the distance, particularly when cures are unknown and management of symptoms both current and foreseen is the ritual communion at the high altar of treatment. I am fully aware that at times, I seem to project understanding of these religious moments, but as some of the things that might be indicative of my future have yet to appear, and others have become so sharply focused that my sightlines seem like the viewfinder of an electron microscope at full power, I can tell you that my distance is neither fully perceived nor understood. I am still playfully accused of showing off on the breathing tests, indicating adequate air force and blood oxygen, but the consciously unconscious perceptions nagging me about arm and hand weakness are also true—it doesn’t take a lot to break me in the wing position and pinch tests are only half the force of six months ago. While I still own the ability to recover, I have had to adjust to the fact that recovery requires more time than before—naps slowly edge up in duration and quickly dive into depths of sleep usually reserved for nighttime slumber. My weight is steady, and my thinking still seems relatively coherent. My legs require full assistance. And with these assessments, the clinic ends with the added benefit of us PALS getting together for sandwiches and the smallest of small talk, in spite of the best efforts of our social workers to probe for potential emotional trauma.

By the time Ev and I get on the road around 1:30 in the afternoon, I can hardly keep my eyes open. Poor Ev does the driving, and I must learn to be more insistent in the future about pulling off the road to rest if one is sleepy.

I am used to traversing great distances by road, but driving is no longer a question with which I will wrestle. Practically, I cannot justify a huge commitment of resources that will surely be needed in the future just so I can indulge the fiction that driving is an indefinite given. After 40 years as the charioteer guiding us through European mountain passes barely wide enough for a 1976 Toyota Corolla, or the chauffeur dueling the car by car and lane by lane insanity of Cairo traffic, or the driver reoriented to left side traffic flow in Cypress, Thailand, and Indonesia; after 40 years of being the guy that got us from here to there in whatever vehicle was made available at the time, my driving will come to an end, and I will stop within a matter of weeks. The concentric circles that define my physical boundaries continue to collapse so that my distance from the dance of physical loss lessens as human distances loom large. Going the distance will continue to circle more and more inward, and for now, it is well enough, though probably a portent of things to come.

Going the distance between doctors and patients is a journey bounded by professional guidelines, but clinic format pushes these boundaries as the caregivers get to know us and we them. Frankly I cannot imagine doing an ALS Clinic every week—these vaunted medical soloists tapping out variations on a theme of “managed loss” while the dis ease conductor beats heavily into the final cadence. It is emotionally exhausting for Ev and me, and I cannot help but think that it has to be the same for the clinic team. Respectful distance might be the only chance they have to stay even, but this distance is hard to maintain in the intimacy of ALS. Partly, this is because we love these people, and of course we hold them in the utmost esteem. They are kind and warm and authentic in their care. You’d love to have dinner with them, talking like food friends do—“How’s the college?” “Oh, fine, and how’s the clinic?” “Oh, you know—same old same old, still no cures, and I don’t get my hopes up.” Then we could lose the “how’s work” catch-up by shuffling through the Twins or the latest concert or politics. These are great people with enormous human depth, and I am always happy to see them. At the same time, the anticipation and the high stakes dialogue can feel like a cross between trauma and conversation while dancing. And we are easy—no vents or pegs or anything like that yet–just arms and legs and torso. But I have to admit that the distance is a challenge, because while it is the professional thing to do, we still speak some of the most intimate thoughts, and that makes the distance confusing at times.

Now, on the tail end of the weekend that wasn’t, looking forward to a week doubled by four evenings out, Ev just put in the distance with her first 30 miler of the season. She is going to ride the MS 150 with Jon and Kirsten and Katy and (I guess) me in spirit. They are doing a Bike ALS Trek next weekend as their 50-mile warmup, and they are going a distance that for me is no longer even a whisper of a quasi-religious voice. Although defined by mileage, fundraising takes center stage so the distance is less important than the seat time on the bike. But going the distance requires me to learn to honor their in-body commitments through my out of body experiences as they increase. The temptation is to just get through it, but that would require a distancing from the delicious humanness of it all; getting through would dehumanize what was and what is to be with distance forgone instead of anticipated. It is tempting to skip some of the distances. But I will breathe in this week, and I will breathe in their rides knowing that if I can hold my thoughts just so, the driving, the weakening, the personal distances both seen and unknown will pass with joy, even if it takes a longer nap, a medical ritual, or a smile and a hug on a sunny rainy day.

The penultimate voiced motivation in Shoeless Joe is to “ease his pain.” The pain to come is ultimately nothing more than distance not traversed. Healing takes place in going the distance, and that is what I plan to do, even if I have to stay still to do it.

Space and No Space

It has been quite a week, mostly good, really intense. Framed by my measured and probably too whiny post on one end, and a realistic panel discussion about the needs of our children in this society on the other, with public radio, public appearances, public fulfillments splashed in between, I feel like I caught a train by my fingernails with half my body flying out the freight door, grasping desperately at the doorframe like I believed I could actually hold on. Most of all, this was the first week of three in which there is no hiding from dis ease fatigue. I have written before that fatigue has a quality that strips everything away so that what is left is pure awareness, even when the awareness is like a blur, a fog, a physical mesh that softens sight even while it sharpens being. It has been quite a week.

This past weekend, my College co-sponsored a conference for equity leaders. It was a first attempt, and if the attendance wasn’t huge, the quality of the presentations, discussions and attendees was wonderful. It was fascinating how political the conversation quickly became. As one of the panelists at the closing session observed, politics isn’t a bad word. Being political isn’t a bad thing, although current associations with manipulation, power struggle, deceit, and immorality have usurped the whole meaning of “politics.” The word “political” comes from the Greek word politikos, with its root meaning a relationship to citizenry. Citizenship, as it was defined on my third grade report card, meant how well you followed the accepted rules for treating each other. So the panel discussion yesterday brought home for me just how weirdly juxtaposed is my citizenship in physical dis ease with our current socially dis eased concepts of citizenship, in spite of our elementary schooling. Citizenship now seems to mean protecting one’s borders from outsiders and usurpers, composing variations on a theme of us versus them that in my new world of fatigued clarity, does not actually exist.

The focus of our conference was on children, assuming that the education of children is a great social barometer. Children have no say in the decisions that bring them into this world, but are produced by human choices ranging from the overly thought out “Do I want children;” to the decision to toss all care to the winds, perhaps even self-medicating the decision-making capacity out of one’s self; to ignorant sexual practice framed by superstitious beliefs about what keeps babies away. It is instructive about life, for no matter what process we overlay on the primal act that creates children, the resulting possibility is the same—a child, and children require care. So, the discussion about how we care for our children is certainly one that relates to the third grade report card meaning of citizenship, for it also gets into the factors of what we are willing to commit, how we share, whether we can be respectful, and frankly, just how nicely we play together in the great sandbox of life. Children really are bellwether indications of the moral priorities of a society.

If I were prone to despair, I would tell you that the perfect storm of social and traditional media, the legal decision that a corporation is actually a person, the ability for corporate bodies to toss all kinds of lies and drivel into the ethers without the accountability of immediate fact or even a person’s name, and the not so coincidentally enormous amounts of money poured into every state and local election about the very same issues, indicates that fear is an overarching priority of someone. Someone would have us be afraid of each other, convincing us that we will never have enough, that protecting and conserving human-made (actually, mostly man-made) institutions and beliefs when all logic shows the need for new understanding, is so overwhelmingly important, that we are physically incapable of violating this knowledge-base—even when it is clearly in our own best interests to do so. If I were prone to despair, I’d tell you that there is every reason for me, in my dis eased state, to pick up my toys and wait out the apocalypse.

But this week, I am not.

Thursday, I went out for lunch with a friend and he asked me how my God-life (not his words) was doing. Since he is that kind of friend, he allowed me the time to turn inward, to search out the corners of the dusty attic where such stuff lies until eventually, I found something I could share and here it is. What I have come to realize is that self and no self do not exist. There is vast space ahead, and vast space behind, and yet there is no space at all. The fears that we experience as humans are based in the fact that we perceive that there are others, but they are not us. And this frightens us. When we appreciate that the only self that exists is indeed a part of our vast humanity, and that in fear we distance the self we perceive to be so all encompassing from the selves that surround us in the no space of our own imperfect perceptions, then we are given a gift that illumines precious life and frames death as a failure to grasp just how much we live within each other.

How’s that for an answer about the God-life?

Yesterday, as I struggled in my über-fatigued state to maintain my focus on a panel discussion about the real issues of children and tax codes and legislative priorities and political agendas; awareness washed over me that each of these panelists—a lobbyist, a superintendent and a state representative—was not a separate entity from me or from the audience in the room. And although we each behaved as if space existed between us, I found myself overcome with love and grace and gratefulness for the men and women surrounding this conversation as we asked practical questions about wealth and commonwealth, children and responsibility, fear and acceptance. And for just a few seconds a gift of sight, of vision, of shimmering comprehension was granted to me as I carefully sought to maintain my balance with the clear insight that the struggles of others are my struggle, and any attempt to deny this is just a temporary purchase of noise to drown out the overwhelming silence of children’s voices, for they cannot speak for themselves.

A week ago, in another conversation, it was observed by a good friend that the “…stupid things that happen at work … must make you really mad.” Before the gifts of dis ease, I probably would have just agreed. But I realize now that anymore, I don’t feel mad. I feel sad, and I am sorry. I am sad that often, our time together is spent in such inauthentic space, where we must play the self-other game striving will against will, seeking the inevitable chess openings that will lead to temporary victory, even while sacrificing our humanity like a pawn that leads to the ultimate checkmate. It strikes me as the same kind of diminishing return that comes in utter aloneness. I am sorry that I have dehumanized others in my own participation, incorrectly perceiving this as my only choice. The fear of the supposed chasms of space between billions of humans can appear to be eased by such activity, but dis ease tells me that those spaces do not exist, and that fear is their only trace.

Crosby, Stills, Nash and Young might have had it right—

And you, of tender years,
Can’t know the fears that your elders grew by,
And so please help them with your youth,
They seek the truth before they can die.

In the meantime, I’m going to try to stay present in the space of no space, and feel the love and energy of so many who are not apart, but of whom I am a part. It just seems like the best politics to do so.