Endgames

Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.

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Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

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I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.

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Looking Good

Even in this time of social media, in this time of Facebook and Twitter, in this time when people will post the most personal of information, even in a time when people blog about their own terminal dis eased journeys, most of us still need to keep private spaces and public faces. It only makes sense to withhold some vulnerabilities behind a public face, masking the turmoil beneath the façade, holding back, demonstrating the wisdom of personal protection and smart boundaries. After all, if we did not maintain a sense of face, then answering the question, “What is wrong?” would colonize our waking hours, even in this most socialized of media times.

My old normal self, when professional considerations dictated the logic of private spaces and public faces, invested enormous energy into the look, the feel, the armored uniform of façade. Now, it would take so much more energy than is mine, just to construct the mask, let alone maintain it for any length of time. The old normal is just not available to me. And yet I still find myself attempting a public face that hides what is going on underneath the surface, in spite of the energy required.

Old habits die hard.

My private-space, public-face condition is especially called out when I meet people I haven’t seen for a while. As they greet me, they invariably will make the observation, “You look good!” Focusing on some superficiality, an article of clothing or my glasses or the color in my face or the smile that belies the dis ease, they are seemingly and genuinely surprised, leading me to think that they believe ALS should ravage its corporeal host in a more horrifyingly obvious way (I cannot imagine). For those that I see on a regular basis, who note the subtle changes as they happen, such interchange is rare, but for those who have not seen me for a while, who perhaps are following my journey through these writings or through news from family or friends, the likelihood is to privately note the losses and publicly proclaim the “good look,” even though the loss is obvious. It is only too human to hiccup some nicety about looking good.

I really can’t blame them. I would do the same, and I have.

I suppose if I was pale and sallow, if I had lost copious amounts of weight or gained full on bloating due to chemo or radiation treatments, if my hair was falling out, if my skin stretched skeletally across my bones, then the ravages of dis ease would be more apparent. But ALS isn’t like that. It moves insidiously and for me, just slowly enough that I can “look good” for a little while, although a little while seems like all I’ve got.

I’m not sure how to respond to “You look good!” Usually, I thank the person and try to think of a way to move the conversation away from my appearance. It is as if they perceive the energy I can no longer muster, a cipher of my former days, a tome to appearance even though God knows I’m already self-conscious enough. Over the past two years I have lost most of my arm and leg muscles, a lot of my back muscles, my abdominal muscles. I am reborn in outward appearance – big belly, skinny arms, skinny legs, weak neck and heavy head atop the whole package. Or perhaps a different way to characterize this new appearance would be that my belly is Buddha-like, although I cannot claim the same inner peace for my life outlook.

I have ALS.

There are variations on the public call out of face. We humans cannot help ourselves. We probe with questions like, “How’s it going,” or “How ya doin’?” not expecting any answer of substance. But for me, such inquiries are fraught with danger. I parry and dodge, usually with good nature and glib honesty, “Oh, I have ALS. But other than that I’m doing great.” There is truth in that answer, but it isn’t comfortable. Neither the question nor the answer lend themselves to the easy repartee that a couple of able-bodied human beings with no terminal illness on their conscious horizon, laughing and joking with one another, would enjoy. The longer I wait to answer, the more uncomfortable the space becomes. Most of us don’t reply to “How’s it going” with complete truth. But the honesty in the answer I have constructed, as glib as it might be, is about the best I can do, and I have to admit that at this point honesty means much more to me than emotional comfort.

I suppose you could accept a biblical interpretation: “Ask and ye shall receive.”

Inherent in questions of state of being are questions of identity. Matt Sanford writes, “What is identity in the face of a radical disruption? Who was I? Who am I? Who will I be? Truthful answers to these questions often take years and years to realize.” There is no question that ALS is the “radical disruption” in my life, and I am often brought up short with the consideration of the real question at hand. “What makes life so sweetly worth the living, something worth the good look, when death in all its ALS forms sits so clearly on your shoulder?” The implication is clear–any outward manifestation of life is inappropriate in the face of terminal dis ease. And in spite of myself I have to admit that it is a fair question. My life has become a search for anything and everything that might balance the knockout punch of ALS. It’s “radical disruption” must be radically disrupted so that a good day is defined as one where the necessity and presence of ALS are balanced by the light of family and friends and music and love.

“You look good!” “How’s it going?” “How ya doin’?”

The human condition is a delicate dance where good and bad, joy and sorrow, sickness and health, dis ease and comfort are neither mutually exclusive nor fully integrated. We are everything and all things, and we are nothing. To say that ALS has taught me to dance might seem disingenuous to some, even ironic in its bold statement of fact. After all, I no longer walk, how can I dance? But the dance dis ease bestows is one that all humans must experience in order for life to be fully grasped in its overall messiness and complexity, its delicious chaos. It is the gift of humanness and free will. It is the gift that takes the focus off of avoiding death, and instead presents a choice – either wither away in the horror or seize the gifts that life and dis ease bestow. It is a balance between the heavily tolling march of dis ease and the balletic leap of living joy.

I don’t look good. My muscles atrophy and my strength wanes. Yet each day my heart is is full through friendship and love and warmth, radically disrupting the radical disruptions of the good looks of ALS. Looking good isn’t about the face or space.

It is the disruptive blessing beyond the look.

Elegy

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

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

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

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

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

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

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

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

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

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

What Does Success Look Like?

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

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

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

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

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

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

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

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

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

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

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

What do you think success looks like now?

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

“You existed before this,” he said.

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

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

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

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Immortality

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.

Writing It Down

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

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

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

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

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

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

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

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

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

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

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

Here is a video of “Here and Heaven”

Here is a video of “Inside The Goat Rodeo Sessions