That Which Does Not Kill Me

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

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

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

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

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

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

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

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

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

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

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

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Sandy Hook

I was working on a blog entry, a tortured affair that was probably too much of something or other for its own good, when the shootings at Sandy Hook Elementary School took place. After the killing of so many children and their teachers, I just don’t have it in me to comment on anything but our collective dis ease. The primal feelings evoked by such evil is beyond anything I can adequately do justice to in a blog. If you were like me, the sight of our President struggling to hold his emotions in check, speaking the unspeakable, was a mirror of the anger-grief churning inside as the enormity of the tragedy was further revealed. And once again, I felt the despair that our human journey is at a crossroads where our intentions–beautiful and transcendent, compassionate and caring, loving and forgiving, intelligent and thoughtful–continue to retreat in confusion and horror from the enormous evil we can and will inflict upon one another.

Who needs ALS to speak dis ease when horribly afflicted men-children perpetrate such heinous acts? For me Sandy Hook is personal.

I love a woman who teaches music to little children. I gaze at her as our understanding of the full horror continues to unfold, and I realize that it was teachers like my Ev, locking down classrooms, telling the children they were loved so that if the killer came to them, love would still be their final moment, holding the horrific sights at bay for as long as they could, asking the children to close their eyes, to perhaps keep one last vestige of any innocence their five and six and seven and eight year old lives deserved. I cannot imagine the haunting, terrifying dreams these incredibly strong and caring and competent teachers, women, will know in the coming years. We now know that the six women killed did everything they could to stop the killer. They were brave, and they were professional, and they placed themselves between children and evil in an attempt to save them.

As a newly retired dean of a school of education, I cannot help but see the faces of the young pre-service teachers we prepared for teaching careers. For them, this is a life choice, not a stepping stone. It is a calling, a voice that says to them that a commitment to children is a far greater thing than the salary and esteem of another profession. Each of them will receive training, information, practice in how to mitigate horror if it should come knocking. And with that in mind, they will commit to creating a loving environment where all children learn. While not mutually exclusive, the skill and artistry required is enormous.

And let me share that there were a few times in my life as a principal where I felt my own safety threatened. Dawn Hochsprung was the principal of a K-4 school, and if you have seen her Twitter account, you see a principal who believed in projecting her entire being in support of her kids and teachers, underscoring their successes, bucking them up to the next challenge, urging them to see the joy in learning, defining her work with passion and love. I feel I know this remarkable woman for I have been privileged to work with so many like her, educators who skillfully bring teachers and kids and parents into a fold where school is opportunity after opportunity, an engaging world of wonder, a place where hard work is appreciated. She gave her life on a day when I am sure that the challenge of the upcoming holidays and keeping the kids somehow engaged was foremost on her mind. Not in her wildest dreams would she have predicted the terrible events to transpire and what would be required of her.

The faith required of parents to trust the safety of their schools cannot help but be tested. To send your six year old off to school on a Friday, to never see her alive again would crush your soul. Anyone who is a parent knows the normal safety fears that we carry for our children. The loss of so many children is so unfathomable, so overwhelming, so undefinable, so wrong, so wrong. My sons are grown, and I still fear for them and their lovely women. To lose your young child in such horrible circumstances would be harder than anything. I cannot help it. The grief swirls through my soul.

I cannot leave the above without considering some very preliminary thoughts about what we should do. I am sure others will have far better ideas than me, but here is a beginning.

Remember the saying, “Guns don’t kill people, people do?” Let’s agree with the point and start a discussion about responsibility. When do we begin to take responsibility for the fact that there is no meaningful way to intervene on behalf of an “adult” with serious mental health issues that could lead to violence? I recognize the possibility of abuse here, but common sense and logic would lead us to conclude that there must be better ways. An 18-20 year old, troubled to the point of homicide, is not going to seek out help on his own. We need better ways to provide meaningful interventions.

The temptation will be to forget, to find ease in the blessed amnesia of denial. We will find ourselves wanting to blame, to marginalize, to distance ourselves from the perpetrator and the illness he manifested. We will never find resolution this way. It is time we embrace the reality that the mix of guns and mental illness is too complex for a single, once and for all solution. It is immature to think otherwise. We need dialogue about mental illness that is decidedly different. The ease of collective amnesia will only allow more and more manifestation of such events as Sandy Hook. We need the adults to show up.

And in the name of responsibility, whether you like it or not, we need an educator’s sense of propriety. That means we don’t get to marginalize others due to their challenges. They are our children, and we need to take responsibility for them, not distance ourselves as if it couldn’t happen to us. This means that all our children need us to claim them, not just the easy ones. Educators do not get to be selective, and neither should our society at large.

Only when we have this dialogue on mental health, can we begin to have a meaningful discussion about guns.

It will be tempting to go after the gun laws. For whatever reason, Americans own so many guns that the effect can only be cosmetic. I am not saying that we should not talk about what we want gun laws to do, but as an old dyed in the wool liberal, I already know it will be a lot of energy expended for little return. Gun ownership is legitimated by our laws. The estimate is that there are over 300 million guns in the US. The horse is out of the barn. But, we can certainly have much more meaningful requirements for owning a gun.

A Honda Civic can also be a lethal weapon in the wrong hands. Why don’t we require licenses for everyone, much like we do for driving, with background checks, and periodic refresher courses and checkups on safe storage and whether one still meets the licensing requirements of gun ownership? I am an adult with disabilities that preclude my driving safely. Just as my eligibility for a drivers license should be reevaluated against my ability, so too should we ask the same of gun owners.

And everyone–buyers and sellers–needs to meet the standards over and over again.

Finally, we need to recognize that many of the best solutions to guns and mental illness will be local. What works in Wyoming might not work in Minneapolis, and vice versa. This also means we need ongoing dialogue, constantly holding ourselves responsible to work the tensions between safety and security, individual freedom and social responsibility.

My heart is broken by the events in Newtown. I take this so personally as a teacher, a principal, a preparer of new teachers and principals, a father, a citizen. Platitudes will not help, and the only inappropriate response is to not engage in the dialogue with respect and truthfulness.

I will return to my blog next week with a seasonal thought, but today, I hug my wife and sons and daughters-in-law a little more tightly and thank God they are here and safe.

Untitled

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.

Summer in the City

It is summer in the city, and early summer means scrutinizing the year’s successes and failures, challenges and opportunities, missed possibilities and veritable triumphs. If you are not part of school culture it is reasonable to wonder, why all this reflection in the second week of June; and if you dance the dance of education, you know that our inner clock is set to the turning of the seasons where in late May and early June, while farmers plant new crops with hope in the harvest of the fall, we harvest the produce of an academic year based on the hope that was planted 10 months ago. For me, this time of year represents another one of those weird juxtapositions. The liturgy of yearly reflection, framed by dis ease, offers up an accounting ledger of gain and loss, columns of perceived profit overall, but parenthetical red ink spilling all over my personal ledger. Even with a couple of weeks left in the fiscal year, I have a pretty good idea of the forecast with all things pointing to continued negotiation of ALS, like a flipped coin that never seems to land cleanly on one side or the other.

Key to any professional reflection is assessing your own and others’ performance. I don’t believe I have ever enjoyed evaluation meetings as much as I have in the past week. I find myself hanging on to every question, every comment, every conversation in which we share our hopes and goals and dreams and yes, our disappointments. These meetings, so perfunctory in the past, have now taken on sweetness, morsels of shared appreciation, frustration, collective failure and success. I want to say more but the words are muted, inadequate to the privilege I feel working with these bright, talented, passionate, and even curmudgeonly individuals. We seek a toehold on the cliffside of Higher Education v. 2012, and pushing up and out under craggy overhangs, swinging to spaces where the safety of ropes is memory, jamming fingers into minute cracks to hold ourselves onto this wall by the smallest of digits, we dangle our professional existence in a netherworld where terra firma has turned upside down. I look back on my own accomplishments, my failures, and I look forward at what faces us looming large, comforted by the presence of these brilliant people. There have been tears in these meetings. There have been mirthful laughs. But most of all, unspoken, there have been present, holy manifestations of just how special this time is together; at least it is that way for me.

The logistics of Bruce with ALS mean that each passing day presents more and more difficulty just to enter the professional day in the life. Taking stock over the past 12 months, I have departed from dressing myself to requiring home care just to get on my socks. The act of buttoning a shirt has transitioned from the just possible to sleeves and necks and sometimes the whole placard left for someone else. My perfectly knotted tie, once so smoothly executed, is now a clumsy ritual of reliance on others to turn down my collar and center the knot. Breakfast and lunch and dinner are totally dependent on the culinary skills of my one true love or trusted others. Nothing is more illustrative than driving: A year ago, I plopped into a Honda Hybrid with a cane thrown in the back seat; 10 months ago, I traded the Civic with Ev so I could drive her Subaru (higher off the ground, room for the walker, easier to swing in and out of); 7 months ago, I moved into a Rollx van with hand controls, and 8 days ago—I stopped driving. The academic calendar recalls the logistical progression of dis ease’s greatest accomplishments.

And of course, the preparation for professional engagement leaves me exhausted, anticipating the everyday exhilaration as if I had run a marathon, swum miles, biked up a mountain, hiked into town and back on an empty stomach. In these end of year meetings, I float on a self-manufactured cloud of fatigue, thoroughly relishing the shared time together, scrabbling to stay focused when weariness from pre-game liturgies pushes my eyelids downward, misting my peripheral vision, darkening the walls and ceilings, yet illumined by the presence each colleague brings into the room. I never feel so alive as when I am in communion with others, and the intimacy of colleagues engaging the common purpose of educating professional wannabes whose entire raison d’etre is to point a life path for those struggling to find their way, is a sweetness that frames the exhaustion in dappled light like the shade of a tree interrupted by summer sun.

This week, one of my favorite people in the whole world brought his district’s administrative team to our campus for a day of K-12 reflection. He asked me if I would say a few words of welcome—something along the lines of current educational policy or trends reflecting the needs of K-12 and higher ed. I worried that welcome like a loose tooth, and nothing seemed even remotely right. And why should it? The epiphany of dis ease floods my eyesight with the realization that ALS doesn’t allow you to be so flippant as to toss off a few ideas about policy. Instead, I spoke from the naked core of what I know best—failure. I said:

One of the gifts of ALS is recognition. As an educator, and a pretty good one I might add, I recognize great teaching when I see it, and ALS is a great, if unyielding teacher. And what have I learned? The cornerstone of my new knowledge is to accept failure as inevitable. I write about this a lot, because such recognition blesses and curses, confuses and clarifies, fragments yet unifies. You can build faith in failure.

Is it any wonder that I want to keep working? Against the easily documented losses of ALS come the professional accomplishments of so many around me, an opportunity to build a spiritual faith where failure is only the next test and the next. I ended my welcome with this:

Today, as you discuss your successes and failures of the past year, challenge yourself that every child in your sphere will be deeply known, loved, fostered, and cared for by someone in your school. Challenge your systems to face failure in a way that will build strength and capacity so that the next failure and the next will be nothing but a pathway to success. Yes, intervene, improve, tutor, school, teach syllables and numbers and sounds and knowledge and the civil responsibility that defines the difference between the educated and the ignorant. But in that time, do not lose sight of the fact that we are, each one of us, failing; and we have been given a great gift in this insight—the choice to energize our collective failures into the emergence of a beautiful human child educated to be persistent, resilient, squeezing that failure, until it yields, and in the yielding, learning success.

It is summer in the city. “Hot times!” My academic clock insists upon reflecting on a professional life that somehow, squeezed out another year engaged in what I love, that somehow my world of physical breakdown continued to intersect with a world in which failure needs translation for its gifts. The sounds of summer in my city tell me to let the sunshine pour down, that just enough will get through my personal shades, and that faith is in the blessings of failure and life and spring planting and autumn harvests. On the local farms, lettuce and leaves and strawberries are just now beginning to show themselves to the possibilities and threats of the season to come.

And I marvel. I just marvel.

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 Teacher

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

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

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

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

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

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

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

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

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