In so many ways, it has been an “aha” week for me. As I complete my first month-and-a-little, post-work challenge, the struggle to find a rhythm, a personal harmonic in synchronous vibration with my disability’s fundamental tone—defined by dressing for ease and not for the job, more and more intimacy with personal care assistants, lunches with friends, longer naps than I ever thought possible, the need for more and more physical support–has been the true north of my journey. I say true north as my direction seems to have veered from the magnetic attraction of the destination, toward what is a much more real, more dis ease accommodating journey.

We humans love to describe life with the journey metaphor. And why not? The path is clear; birth, childhood, adolescence, adulthood, work, relational commitment, parenthood for some, empty nest, maybe grandparenthood, retirement, agedness, and off we go into the light. I may not have named all of the points or their exact order, but the birth – death existence is quite a trip, and one that we all face. The uniqueness of the journey is in the dash between our date of birth and eventual death. Each significant occasion that marks our lives, seemingly unique to us, can be generalized in broad paintbrush strokes to humanity’s experience. And each occasion is an opportunity for growth or calcification.

Life growth and death brittleness come in many guises. Each of us might know growth through our partners, our relationships, our families. But we might just as easily experience the ravages of a relationship gone bad or a partner without commitment. How many of us know the pain of family dynamics framed by substance abuse or addiction? Each of us can hope for health in our lives, but we also know with certainty that what lies ahead will be marked by dis ease through manner of ways the human body goes wrong. We hope for good jobs and are aware of the tenuous nature of employment. The journey is not easy or sequential. For some, it looks like a straight path while for others, life is defined by events that are out of our control, clear leaps and bounds from event to event. Thus while the dash looks like a straight line from birth to death, life’s eventualities belie the look.

I know that you know this. I am just saying it for me.

This week, I found a bit of peace. It came through a slight reframing, a deeper spiritual understanding of my own journey line toward the death that awaits me a whisper of time from now. And I realized that the core idea with which I left my working life, consisting of a list of things to do, accomplishments to be checked off day to day and week to week, was silly. I am not retiring at the age of 65 with a hope of 20 years ahead of me for travel and all of the things I haven’t done. I have not reached a pinnacle in my professional life that feels worthy of celebration and satisfaction. Ev and I will not be selling the home and moving to a desert island. Nor will I be devoting my leadership experience to serving on the board of some meaningful nonprofit. I’m not going to start training to compete in the 70 and older bracket of the Ironman. “My hands are tied, my body bruised, she’s got me with nothing to live for, and nothing left to lose;” Bono’s religious romantic tome to existence pretty well sums it up. It is harder and harder to communicate through my hands, my ALSFRS is down, I cannot bathe or dress myself, eating requires assistance, I tire easily. What was I thinking?

Sometimes, epiphanies are so quiet they scream.

None of us is granted such prescience as to know the exact moment of our ending until the moment happens. And there is my “aha.” I truly do not know how much time is left me in this wonderful life. I do know that I will die eventually. The epiphany moves me from a peace that waxes and wanes in its ALSness to a peace that waxes more and wanes a little less in its utter humanness. My problem has not been with an impossible concept of retirement, but more with the feelings of loss and grief at the lack of such possibility.

My problem has been me.

What I am trying to do, what this new realization seeks to teach me, is to recognize inevitable frameworks of eschatology. Tom Waits said it when he paraphrased the early Christian church, “Jesus gonna be here, He’s gonna be here soon.” It is not my place anymore to plan for an existence beyond the day, the hour, the very second of breath and life. Rather, it is enough to seek a good day no matter what.

Why didn’t I figure this out earlier?

One of the more interesting concepts to come out of late 19th and early 20th century anthropology is the so-called “cargo cult.” A cargo cult in its classic sense is when a pre-industrial population becomes aware of the availability of goods and services associated with industrial manufacturing societies, and seeks to attract those goods without the manufacturing culture required to make them. Often, this would be manifest in rituals such as building airstrips or docks even though the society owned no planes or seafaring ships. The cargo cult is useful for explaining some of the more bizarre behaviors we observe in the zigzag line of human existence. In an effort to bring the goods home, we come to believe that we can construct a plan for everything, accounting for every variable, smushing in every single experience that we think we deserve, usually within some ritual that becomes less and less tied to the actual facts our lives exhibit.

All my life, I have been waiting for the cargo.

It seems that no matter how clear the lesson, I still try to build my life like a runway to attract perfection, to exercise control in a way that results in the plane landing with all of the straight line journey items I could desire. You can name the journey as you like, but for me, it was leaving behind me the negatives, the things that didn’t work, the imperfections, the losses, by exercising the rituals of retirement so that the cargo would arrive.

This week I realized that I “retired” at the age of 85, not 65. That changes things. This week, I stopped waiting for the cargo to show up. This week, the steady progression of ALS, point after point, and the obvious tasks that are now beyond me, illuminated this new understanding. It is enough to have a good day, hour, minute, second. Therein is the rhythm I sought, the harmonic I needed.

And eventually the cargo actually arrives, and the journey ends with the perfect harmonic and a compelling rhythm wrapped up in melodic wonder.

What Do You Do?

This is my first week of freedom from the work activities so at odds with my waning physical capacity, and I find myself answering more often than I would have guessed the question, “So, what do you do with yourself all day?”

This new normal of not working requires a settling period where the rhythms and tempi of dis ease can play out in quest of finding wholeness with what I can do, what is within my physical scope. I planned for this time as one plans the books to carry on a six month ocean cruise–sweet reads and thrillers and intellect and poetry and at least one book I should have finished years ago, War and Peace comes to mind. These reading lists are never complete, never adequate, often well intentioned, and in the throes of the vacation (technically I am on vacation until the end of the month), they are realizations of the accuracy of predictions for the time you have on your hands. Such is the new way of dis ease and its minion ALS, and frankly, I do not feel their gratefulness for embracing this new routine.

So, what do I do with myself all day?

I have planned for this time with a sense of purpose, much like I would plan one of our many travel forays in the near and far history of Bruce and Ev and fam. My experience is that travel is best when it is both deliberate and open to the reality of the destination. Beyond the breathless descriptions of the travel books and websites, travel is a dish best served with plenty of acknowledgment of just how little control we actually exercise when we leave familiar confines, especially in a place never experienced before. In my former life of working, I could plan because the work had such a familiar smell, taste, feel to me, and when control of that existence got away, I always knew where and how to restore the stasis needed to remain on an even keel. What I did not realize about this new normal in which I now find myself was that stasis would be the norm, and creative disruptions must almost be planned.

Before you decide I need to be surprised by something wholly spontaneous like randomly appearing clowns or the sudden sighting of balloon people, let me explain this planned disruption a little further. The creative force in my worklife was almost always the result of tension between what I knew and the unknown that existed outside the collective experiences of me and my team. As one who sought to pay attention to the complex balance of standard operating procedures and novel challenges I found the moral imagination required just to maintain stasis to be breathtaking, and I learned early on that it was important to be open to the reality that the standard operations in place were probably inadequate to the challenges at hand. In short, I learned that no matter how well you plan for the upcoming moment, there must be some space reserved for the fact that there will be significant differences between the moment as planned and the moment as experienced, and thus the need for systemic creativity and focus, whether it was a musical group or a college, was paramount.

One of the sweet, quasi planned-fors of this new post-work existence is lunch with friends. This week, I have had lunch four out of five days with loved ones, each with their own interests and joys and yes, the sustenance that I cannot furnish for myself. I cannot begin to tell you what this has meant to me. Each brings food and conversation, focus and the outside to a day that could easily degenerate into questions of worth–self, life, death. I have enjoyed this mid-day time immensely, more than I thought I would, given the dual meaning of my needs. My friends are so pleasant, and there is nothing so healing to the soul as food prepared or brought by another. And of course the meal radiates both the warmth of nourishment shared and the continued progress of a body winding its way to nothingness. We have forewarned all with a portent of things to come–“Please note that his hands are weaker so foods such as soups may require more assistance for him to eat.” Translation–this isn’t just about fixing him food. You might have to feed him soon–nudge, nudge, wink, wink. And so the days take on a rhythm that orbits around the golden mean of such dichotomous meaning.

So now, I experience my old normal leadership phenomena, only inverted and inside out. The purpose perceived from the planning side of the road looks a lot simpler than the purpose perceived after making the crossing. Like the difference between the map representation and the actual winding dirt ribbon that disappears into the distant hills, the journey only partially resembles the once predicted pathway. There are the inevitable bumps and gravel and potholes and detours, but it is the roar of threatening monotony, days too predictable, the sound of routine’s footsteps that haunt me. While I really hope this goes according to plan, it cannot be the lockstep, inflexible agenda one gets with booking a bus tour to “see” all the major sites of a city from the gawking safety of a comfortable seat, window in between, in three hours or less. Such a tour is maddeningly predictable and mindfully dulling.

And I admit, my new normal has some of that bus-tour flavor. It is easy to get up and let the time between my PCA’s departure and my friends’ lunchtime arrival whiz by in the windowed confines of my lovely space. Without moving, the outdoors is a blur of activity beyond my investigative ability. It is chilling, soporific and it blunts the intellect. And when all else fails, I nap profusely, accomplishing the work of winding down little by little, sleep to sleep to sleep.

In this new space, the disruptions for imagination and creativity, for meaning, for the very real work of living with keen awareness of my mortality, must out of eternal necessity, come from within. There is nothing out there that holds the same power or significance as the inside work I hope to do. I now fully understand why my grandmother said to me three weeks before her death, “I don’t want you to send me anything anymore.” And while I do not plan to die in three weeks, the material items of this plain of existence have been remarkably diminished in worth, and the only thing that has value for me that I feel has any relationship to wherever it is that the next destination takes me, is the love of friends and family, my one true love, as it has always been. If my arms could rise to the embrace, if my mouth could kiss this all away, if my tears could cleanse the doubt and physical memory where humiliation and regret live, if you could know how much, oh how much I love and feel and laugh and weep this new life; then, then what? It is almost on cue, the orchestrated life with chords dripping irony and quiet realization.

What do you do with yourself all day? I eat lunch with friends who don’t seem to mind my strengthening weakness. What do you do?


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.


Friday afternoon, summertime, South Minneapolis: I roll through the Uptown Art Fair with Ev and friends Mike and Madelyn, washed by sharply defined yet humid and diffuse aromas, afternoon sun, heat on the pavement and deep fat frying, warmish raita’s and gyros, and beer spilled on the ground from sloshed glasses hurriedly handed from vendor to sweating hands craving cool beads of plastic cup condensation and pilsner’s tang on the tongue, mixed into a delicious existence of peace and anxiety, sensuous caresses of warm breezes, and that very ALS-specific needling feeling as sweat struggles into every pore and burns eyes and skin.

And the boulevard along 29th Street, lockstep in marching canvas booths exhibiting goods beautiful and boorish, white tents from Colorado and Indiana and Illinois and Arkansas and Wisconsin and yes–even Minnesota, shaded by elms struggling to define a new purpose in their own dis ease, reaching heights above the buildings and drooping low to offer shade, some marked by orange, others by green toward a future certain only in the minds of arborists and tree cutters, the street roiling like a sand hill of ants after a rain pushing more and more out and up and over to clear a path for the rest of us, ears rushed by winds of a persistent human drone, words understood at the primal level of language unspoken yet recognized; our senses assailed, our memories struggling to bank this day for the Minnesotan winter to come or the friendships that time and distance would sunder, each of us carrying the dis ease of temporal knowledge, deep cellular realization within, pressing us to hold this moment forever, even while physically drawn to the next booth and the next, moving downhill ever so slightly urged on by the persistent push of the earth’s curvature.

It is supposed to rain tonight, a severe storm sweeping cooler air—heralding the long autumn ahead but today, high summer.

Where do summer afternoons go? As meaning and legacy and immortality push through the discipline of yesterday’s moments, I struggle to hold the energy in reserve for the time when it will be necessary just to get through the storms of the seasons to come. It costs every energy nickel I possess to take it in, yet I want to live the moment over and over and over, to close my eyes and hold this sun and shade and humanity close for the time when we wear winter’s armor with eyes peeking through woolen slits carefully making us impregnable to the arrows of slicing bitter cold and their accompanying human disengagement.

Friday afternoon, summertime, South Minneapolis: I embrace the moment’s immortality not as some scholastic construct of religious fantasy only held by God’s insiders; but real mystical immortality, discernable spirituality marked by spilled beer, falafel sandwiches and lemonade in quart-sized glasses, earrings of pearl and sterling, light wood inlayed by dark oak or white maple or red cherry, paintings inspiring the collective unconscious of smoky jazz halls and singers with gravel in their voices loving the microphone and moving us to shameless memory imagined by ears but realized in sight. I want this breeze to play over my body without desiccation or heat or the knowledge that all things come to fruition and once born, quickly fall away to leave earth for the next generation to experience its own shortcomings. It is a relay to eternity, and this day says to me, “You know that it is true. Your place is neither before nor after but now in this moment.” ALS sharpens the focus, and immortality always intrudes.

Last night, from a Caring Bridge site, came the anguished (he called it shameless) plea of a father desperate to capture the woman he loved into some narratively formed keepsake beyond her way too short life on this earth, mementos passing for the still alive and conscious presence in the life of a two year old son who would only know the stories second-hand of the remarkable human being his mother was. I want to comfort him, to help him see that even if no story was written, if no one responded to his pleas for more and more about his passed lover, wife, partner, muse, and yes—the source of the most pain he has ever experienced, her immortality is assured, and his son will be the witness.

Immortality always intrudes. I am lucky. I am not the father of young ones. A witness of my own immortality resides in the perfections and imperfections of my sons, in the unconscious way that I see myself in their outreached hands to reconnect with their true loves as I hope they remember that I have reached out to mine.

Dis ease has taught me not to confuse immortality with consciousness. Conscious knowledge of your influence is just an ego moment falsely played on strings of an out of tune violin. Consciousness isn’t immortality. Immortality exists whether you are conscious or not. It is in the vocal qualities, the gestures, the slightest turn to the left or right, the walk, the look, the nod, all secret codes of the most profound and lived gifts others have given. None of us is as singular a person as we would like to believe, responsible only for our own successes and failures. Yes, people work hard, overcoming obstacles beyond them, accomplishing the impossible in great things and remarkable ways. But these accomplishments are not singular in time and space. They are a part of the immortal narrative of humans—there was a before, there is a now, and there will be a future—a narrative of immortality’s jet-stream carrying the influences of those before us and those yet to come. Consciousness is fraught with the dangers of ego need. Unconsciousness is frightening. Immortality comes through in the kindly acts and malicious deeds we inflict, impose on others, but also in the sunny presence of a humid 90 degree day.

I have been too concerned with my own immortality of late, too cognizant of legacy, too conscious of the cult of me. On Friday afternoon, summertime, South Minneapolis: I roll through the Uptown Art Fair with Ev and Mike and Madelyn, washed by the goodness of their love and the presence of a knowledge that this indeed is our purpose—to inhale the overwhelming beauty of life. I am happy and tired and a little sun-burned, and well aware of the immortal presence of my partner and best friend, my friends and loved ones, and my own dis ease puppet master playing me for the song that I am. It is a tension too good not to breathe in all its beauty. This day, I have not confused what I leave with what I did. I have not mistaken false gratification for hopeful connection. Today, I understand what it is to be immortal, conscious or not.

But mostly, mostly I have spent my nickels wisely.

Learning to Bike Again

I think I owe everyone an apology. No one needs to listen to the raw whiny voice of someone feeling sorry for himself, because he thinks life isn’t fair. Unfortunately, I asked you to put up with as much last week. Not that I don’t think I should share, but the reactions from so many of you were a tipoff that you thought I had lost my collective senses, that perhaps ALS had finally taken its measure of me, that I couldn’t take it anymore. I want you to know that this opportunity to share, to interact, to bring you a hint of understanding the process that loss creates, is my privilege. That this privilege is framed by dis ease requires a certain care in how and what and when I tell you. So much for grace in the face of dis ease! Let’s pretend the posting from last week was a mistaken draft, a cathartic dump I could have kept to myself. Instead, let’s take an underlying message, a message I have chosen to call “Learning to bike again,” and use it to move into a better place.

Understand, I know I am not able to bike anymore, but I enjoyed biking so much when I was able-bodied, that to use it as a metaphor gives me great pleasure. With the numerous losses in my physical abilities, I missed last week’s opportunity to place them in the moment, to find the place where they just the next challenge, and not life defined. Rubbing salt in this proverbial wound, on Friday, the losses that I told you about were reaffirmed at the Berman Center in my monthly drug-trial checkup. Qualitative data isn’t good enough with ALS; each month at Berman gives me a number to place on the loss. Dammit! But biking, biking is the metaphor, the memory, the methodology back to that sweet spot.

Choose an activity you really love—hiking, singing, painting, running, cards—something that challenges you to accept the pleasant with the unpleasant, the good with the bad. As each one of us carries our own dis ease, that activity can come to symbolize the way of the dis ease we carry, and more importantly the learning we bring to its handling. I choose biking. When I was younger, I could bike miles and miles with very little specialized equipment and hardly any planning. As I grew older, I found biking to be far more enjoyable as I invested in bike clothing, bike tools, and of course two good bikes—one for the road and one for commuting. Biking taught me that cunning and good technology could make up for losses in musculature and oxygen metabolization. Biking taught me that even though I noticed slight losses in my physical capacity over time, I was able to compensate for these losses with different technology, different preparation, different repair techniques. It isn’t so different now with dis ease. As in biking, I recognize the necessity of staying in front of the needs as they present themselves at the speed of ALS.

I must learn to ride a bike all over again.

This new space recreates old space—where eating and drinking are planned activities, the technology of the wheelchair is essential to basic bodily functions, a microphone is good for a crowd or a noisy car, driving is for others, and Ev swings my legs into bed. In terms of biking, it is only learning to ride again, finding the balance over a new frame, getting used to new shifters, testing different brakes and especially, knowing I will have to learn biking over and over. Don’t be afraid.

In the fear inspired by ALS, I fear I have not acknowledged the dis ease that each one of us carries. I fear I have diminished the humanness I have been so privileged to witness with so many of you. I fear I have forgotten to acknowledge the parallels of ALS and the human condition. I fear I have been less of a friend than I should have been. In the fear is the whining. The aging process with ALS moves quickly, far more quickly than the old normal existence I assumed for me and now for each of you. Such assumption is not fair. So many of you have been kind enough to share your own dis ease moments, underscoring similarities based in the increasing complexity of living with these bodies as we age.

I want you to know I am sorry for not listening. In learning to ride the bike again, there is a center shared in the moment it happens and epiphanies abound.

Six weeks ago I stopped driving – I mustn’t live there. Four weeks ago I upped my home care – I mustn’t live there. Two weeks ago I had to ask that certain foods be cut into bite-size pieces for me – I mustn’t live there. I sleep more – I mustn’t live there. I use a lift for showering – I mustn’t live there. I can only stand for a few seconds – I mustn’t live there.

Tomorrow will bring another loss – I will not live there. Next week will bring new grief – I will not live there. In mere months, work will overwhelm desire – I will not live there. Future loss screams consistently about future loss – I will not live there.

Now comes the moment of the quiet center.

The quiet center is learning to bike again. Each time my balance on two wheels is compromised, a new opportunity to change riding technique arises. If I stay right here on my bike it doesn’t scare me. Instead, it looks like fun, a new challenge, a new hill to push through, a new distance to attain. The quiet center reflects the discipline of the moment, neither where I used to live nor where my future lies. It is adding a new gear to my derailleur, losing weight from my wheels, adding carbon or titanium or steel to the frame, switching out the drivetrain. It is riding in the rain, the cold, the heat, the humidity. The quiet center is this body as it is – not what it was, not what it will be – unable, yet still able.

The quiet center is the privilege of connection—to reach and be reached, to support and be supported, to give and take.

Dis ease has taught me to have faith even when faith seems silly. Last evening, with my sisters-in-law, brother-in-law, niece, nephew, son and (God I hope) daughter-in-law, Ev and I enjoyed good food, good conversation, family and family and family. My son David grilled beautifully, and all of us loved the eating. I think you can have faith in such times. I believe it’s indicative of the faith that makes life so spiritual. It is just getting back on the bike after a terrific fall, and finishing the stage.

Yea, though I roll through the valley of death…

So again, accept my apology and don’t worry too much. I’m still too old to rock ‘n roll and too young to die, and somehow or another, I will get my leg over this new bike, given by the grace of ALS, teaching me over and over again that training wheels are unnecessary and balance is just a state of being.


The Swirl of It All

You might have noticed that there are some words I often come back to for descriptive purposes.  For example, I talk about fatigue instead of tiredness and meltdown over the adult version of temper tantrum. I try to avoid being overly political or cynical, not controversial but challenging; usually commenting on things that through the eyes of dis ease, seem very different from the temporarily able bodied perceptions I used to hold as if they were permanent.  This is deliberate as old familiar feelings, thoughts, intuitions, perceptions passed through always present ALS, take on the quality of almost-epiphanies, significant realizations calling for extra attention.  When I need to work something out, when no moniker of enlightenment magically appears, I know that there is nothing to be done except write, examine the inadequacy of written words and rework the writing over and over until it yields meaning.  I often describe this state as being in a “swirl.”  Usually associated with the layered blending of frozen yoghurt, I find the word highly useful in describing thoughts that have no peace.  Swirl is its own dis ease—as if you are carrying something quite significant, but the only way you can find to describe it is mired in something trivial, incendiary, naïve, incoherent, inadequate, mute when words are needed, and over-spoken when a quiet center would be more useful.

For me, swirl often happens at the confluence of several significant events.  This past week, the combination of a visit of friends from Norway that made me much more conscious of the trial of a mass murderer, Supreme Court decisions on healthcare and immigration, and ramped up coverage of Minnesota’s so-called marriage amendment created such a confluence.  Each of these public events inspired its own swirl, with the majority of the discussion reflecting a less than thoughtful, easily predictable direction.  In fact, the way that these issues were presented was designed to appeal to specific frames of reference—that combination of culture and experience that creates scaffolds of knowledge from which we judge all experiences, all situations, all others.  While it may be impossible to experience anything other than the coverage we experienced last week, I feel something else is really going on.  It could be argued that these three highly charged issues are being used to sort us into uneasy conscious columns of culture, although I cannot help but feel that the manner of presentation is much more about a broader spectacle of dis ease. 

The trial of a man that killed 77 humans has raised a number of public, fundamental questions about justice and just proceedings, the role of the press, whether a civilized society should have the death penalty or life sentence, and especially about the responsibility of all these institutions to the families and friends and memories of the victims.  And of course, the so called debate on universal health care was not definitively answered by John Roberts and the Supreme Court.  That decision has inspired Shakespearean heights of “sound and fury, signifying nothing.”  I have Facebook open right now, noting the “political” postings of my “friends” and I can only observe the lack of critique for anything that vibrates in harmony with personal beliefs, and the over the top diminution and outright vitriol that is reserved for those who differ.  Add in the advertisements that have started appearing in the State of Minnesota both supporting and decrying the “No Gay Marriage” Amendment that has made its way onto our November ballot, and it will be hard to get a word in edgewise. 

Talk about the dis ease we carry.

I am not going to discuss the rightness or wrongness of people’s positions vis-a-vis these issues; that is not the point here.  Rather, these examples illustrate a swirling of the human collective, and it is troubling.  I have come to realize that as my own physical abilities to connect with other humans are waning daily, the ability to recognize another person’s humanity, to connect in some way that is meaningful, to engage in that which fosters growth rather than diminishment, has become more and more important to me.  How, if our humanity is the connective tissue that binds us, can we be so divided by the events that shape us? 

This is not just a philosophical question; my life quality is specifically influenced by the value of the human engagement that I am granted.

The issue is not one of recognition.  We homo sapiens don’t seem to have any trouble recognizing other humans.  But our immediate recognition is so overladen with other stuff, that human appreciation flies out the window. To paraphrase Shakespeare again, “methinks we do protest too much.”  I am overwhelmed by the dis ease of our collective humanity in these exchanges, even as I also feel my own urge to participate in the same, as if it would ease the ache I carry in my heart, or the anger in my gut.  And to what end would such participation lead me?  Do my brothers and sisters find solace, release, joy, peace in their own participation?  When I project myself into such doings, I perceive nothing but emptiness, vacuous self-congratulations with no substance, hurt and fear and manipulation and the wholesale destruction of others.  Whole industries are predicated on as much.  Whole cultures echo this noise.

What’s the alternative?

Today, I attended a funeral.  Since it was in another state, it was streamed on the internet.  Oh how I longed to physically reach out to this lovely collective rallying for the family of a beautiful young mother and pastor to their community, even as they grieved her loss.  Her life flamed like a solar flare, only visible to a certain, dis eased hemisphere.  Somehow, I came into the sphere of her influence, and today I ached with electronically mediated fingers to grasp the beauty of living where she inspired human truths of love and living and dying and laughter and grief.  But in this swirl of sorrow, came an epiphany.  This whirlwind of death and grief, lit by this beautiful soul alive to the ages to come, only dead in physical body, pointed to another way.  In a small voice that pierced my own dis ease, here came the revelation.

Humans are capable of fearless love for each other.  The funeral of a person whose Caring Bridge site was called “My Cup Runneth Over” in spite of the fact that it was possible to see her cup poured out on the ground by the ravages of cancer, pointed to the incredible human capacity we have for connections that build each other, that face the fear of living with dignity and encourage a centeredness where dis ease is only a consideration, not a rule.  It was an acknowledgement of the value of a life lived fully, conjoined with the grief of a life lived way too short.  But the capacity of the human soul is such that we can honor and live with such contradiction, if we dare.

I realize now that my swirl this week was not so much the noise of murderers and fear mongers.  It was the contrast of living until you die, with dying as you live.  And living until you die is only possible if fear and emptiness are replaced with growth and love and fostering a center where spirit shines past death and into lives and lives and lives.

I’ll take that with nuts on top.  

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.

The Apology

I have been thinking about apologies this week, mostly because I have been feeling a little sorry for myself. Due to the speed of ALS, the physical losses seem to tumble one on the next, so that just when I feel like I am good with the space I currently occupy, a new chasm opens up and down the rabbit hole I go again. And of course, each of these new physical losses is accompanied by regret at the very least, perhaps sorrow or even grieving of sorts. Some of it is hard hitting where I find myself saying somewhat incredulously to my body, “Really, this is where you are heading, really?” Some of it is pretty Minnesotan, “OK, whatever.” All of it lands you on the regret-to-sorrow-to-grief continuum. When you have dis ease, the place you land defines “I’m sorry,” and I have to admit, ALS can really make me grieve.

I accept that dis ease inspires regrets, so it isn’t difficult at all to recognize twinges of conscience over some past action, a past slight, a stupid thing that I know I did. When you are my age, with my past, you could spend 25 hours a day regretting things you have done. I have had to learn not to ride the regret train too often, or life could be one great disingenuous Steve Martin line, “Well excuuuuse me.” From where I sit now, I know how impossible it is for us to grow as human beings without hurting another in some way. As we careen through childhood and adolescence and adulthood, emotional flotsam and jetsam is inevitably left in our wake. But I have also hoped that as these experiences have accrued, I would become more sensitive, more caring, more aware of the difference between hard conversations that proffer change’s new paths albeit discomfiting, and hurtful discussions that leave no room for betterment or growth. And that is what I use as the bellwether for whether I should feel regret.

There are times when an apology is appropriate, especially when the social fabric has been torn either purposely in the name of some supposed greater good, or accidentally due to the insensitivities of the moment. Apologies, if done right, will offer the mending and repair work that is absolutely necessary to move on together. Learning to apologize is complex as our earliest notions about apology come through our parents, and their motives and techniques color our perceptions of the concept, passed on to our own children and grandchildren through our own acts around apology. Some parents see an apology as a way of mending the inevitable damage to familial structures, and they expect the apology to suffice in that endeavor. I think that from such an interpretation, children learn a healthy regret, enough to want to empathize, but not so much as to debilitate them. However, I’ve been a teacher for long enough to know that many parents (and teachers) see an apology as a punitive line in the sand, and this interpretation overlays guilt and shame and resentment on the act of apologizing. That can result in manipulation and inauthenticity if such an interpretation stands unchallenged. If nothing else, the teaching of apology is fraught with danger for how we frame these moments—either authentic or manipulative—frames the act.

How apologies are perceived can also be quite complex. “I’m sorry,” invites all kinds of scrutiny—everything from “Where did that come from;” to “Oh, you don’t need to apologize;” to “You’re damn right you better apologize;” to “Thank you, and I forgive you.” The psychosocial implications go way beyond the apology. Apologies can be manipulated to indicate weakness as in the conservative backlash that took place in Japan when the Emperor first apologized for Japanese atrocities inflicted on the people of Korea, or the inevitable talk-radio response that took place when former President Reagan apologized to the Nisei for their interment during WWII. Of course, apology can be interpreted as a sign of strength too, so that admitting culpability and offering to move on together, changed by the realizations that led to the apology, is indicative of maturity and comfort in one’s own skin. What is clear to me is that apologizing is really only the front end of whether we shall grow and learn from our regret, and that moments of apology can foster great wisdom over time. Of course, they can also result in great denial, self-delusion, and self-serving rationalization. I guess it really does depend on what each of us brings to the apology.

I have to admit that in this time of Facebook, I have been tempted to go back and revisit different times in my life, remaking acquaintances with whom I felt I might really owe an apology but was either too arrogant, or blind or stupid to see it at the time. Mostly, I have resisted such impulses, preferring to think we all have moved on from such dis eased moments. I am puzzled by these urges—that is, why my moments of dis ease have also been accompanied with a strong desire to apologize. And up to this week, my conclusion was that the accompanying anxiety of dis ease inspired strong needs for some stasis in other arenas of my life, hence the need to apologize. On reflection, that seems to me to be pretty self-centered.

All of this leads up to an incredible event this past week. A friend from my childhood reached out to me and apologized for a moment carried for over 40 years. I won’t go into the circumstances, as they would require more than their own blog entry. It was when we were 14, and neither of us had the life experience, nor the life wisdom to truly handle a situation that flummoxed the adults in our spheres, let alone a couple of adolescents. But I think what is more important is what that apology meant to my friend’s life, and probably what it means to mine. Our Facebook back and forth, started so bravely and so vulnerably by my friend and framed by 40 years of accrued living after the fact, was a revelation. And here it is: It is in the apologetic moment, as we seek relief from the regrets and sorrows we carry, that we consciously construct the human beings we wish to become.

This is delicate stuff, requiring incredible balance.

You need sufficient regret or sorrow or grief to disrupt your inertia and cause you to seek centeredness again. But that isn’t enough, and this is what my friend realized. It isn’t the apology. It is the ability to embrace the dis ease, allowing it to shape you into goodness and vulnerability. It is not enough to apologize from your dis ease. You must genuinely wish to bring centeredness to another. If all you want is to feel better yourself, then what you will get will be the diminishing returns of self-serving apology rather than the synergistic growth of seeking another’s betterment. My friend understood this, as the whole point of the outreach was not for my friend to feel better, but to acknowledge the concern that the moment had been hurtful to me, and that hurt carried through, even 40 years later.

See what I mean?

I now realize that sorrow has the potential to be a constant companion for the good. It urges us to be the persons we want to become, not some static, automated emotional grub who cannot recognize the beauty of the currently shared moment except with regret as a past event. This is not something that I could have voiced even last week, but my centeredness was disrupted by an apology, truly heartfelt and other-centered. And that sorrow ultimately helped me understand my own regret and sorrow and grief in ALS.

And for that, I’m not really sorry at all.

The Truth

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

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

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

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

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

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

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

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

At least if I can handle it.