Lucky Man

I am not sure why, but the song playing on my personal life soundtrack this week has been that 1970 warhorse, “Lucky Man” by Emerson, Lake and Palmer. One of the first popular songs to use the distinctive Moog Synthesizer wail (if you have heard it, you know exactly what I am talking about; if you haven’t, there is no description), coupled with great background vocals and arpeggiated guitar accompaniment, it was a quintessential comment on commercialization and materialism. Punctuated by the sad cry of the Moog, the initial message that a man who had everything—money, fame, loves, lust—was a lucky man, melted into the ironic observation that the same bullet that might kill those less “lucky” could also fell him. “Lucky Man” was an observation on perspective, perhaps a little simplistic and romanticized, but still compelling. So, the very real and emotionally wrenching life-considerations experienced by Ev and me this past week flipped ELP’s ironic definition of “lucky,” and the act of placing meaning around the fatigue and joy of living through dis ease found me feeling, perhaps inharmoniously…lucky.

“Ooh, what a lucky man he was.”

One of the gifts of dis ease is the fact that what looks like unavoidable loss can almost always be reframed into ironic gain. This week required such reconsideration. I have learned to pay attention to loss’s foreshadowing. For example, before I was diagnosed and still trying to figure out what was wrong with me, I was well aware of the fact that my spinning on a bike seemed very uneven with my left leg having to be pulled around by my right. At the time, I interpreted this as a need to strengthen my left leg, to weightlift, or force myself to over rely on the left leg to make it get better. Of course, now I am painfully aware that the issue was not leg strength at all. It was a message ALS was sending to a person with no frame of reference for the message. The lesson was clear–just because you don’t have the framework for understanding, doesn’t mean a message requiring comprehension isn’t there. Denial isn’t helpful. Change is inevitable. Static expectation is for death and taxes.

“White lace and feathers.”

This week was a Mayo week, and while in many ways, we left Rochester more intact than usual, the noticeable changes of the summer required us to explore more deeply than normal with a need for straight-talk discussions with the medical staff. You might note that I am using the plural here. Another one of the lessons of ALS is that just because I am the one with the condition, doesn’t mean that it’s effects aren’t felt by Ev, my sons, my friends, my colleagues. It is complicated, and I must not act as if I was alone in this endeavor. So we sought help in anticipating the next great paper cut and the next, and trying to stay ahead in this race to the bottom knowing full well it will catch up to us. I feel lucky to understand the implications of complacency and the need to predict.

“All dressed in satin.”

Anticipation is a gift that can be tyrannical. It can lead you to believe that full preparation with one hundred percent contingency planning is possible. Instead of living in the moment you are given, anticipation can cause you only to see the future with its hopes and fears. Yet in dealing with the inevitability of mortality’s costs, anticipating loss can be advantageous. ALS has taught me that if I need something now, and I am not prepared, it is too late. ALS teaches it is not possible to foresee everything, that such attempts are probably going to fail, so moderation in anticipation is appropriate. Having professional caregivers who support me in predicting these physical and emotional challenges, who speak truth even when truth is easier to deny, feels lucky.

“White horses.”

So what has changed? It feels like I have reached a specific empirical tipping point. For the first time since my initial diagnosis, I feel the need to carefully consider the end game, not that it is coming anytime soon, but the combination of so many of the gifts of ALS—anticipation, non-complacency, prioritization, the deep knowledge of the love that follows—have come into a confluence of meaning for me. There are big decisions to reach, I see them coming, I know their meaning, I can exercise some influence not so much on their existence, but on how I want this to play out. And this is a gift for my family and my friends. In spite of the loss, in spite of the grief, human choice remains.

“Honor and glory.”

Even the temporarily able bodied know deep down that this too shall pass. Although we might perceive dis ease, we find it easier to cut off the source of our perception and fly above it as if nothing will happen. ALS strips out the utility of such hovering. It says, “Engage with me now,” and because life’s fleetingness is so insistent, the fear to say, “I love you, I hold you in my heart,” can dissipate. It is a gift—kisses on the head, caring hands, time’s full meaning palpable and present. You could look at this as illustrative of the losses brought on by ALS, for ALS bestows choices not in its progression but in the attitude for approaching what will or will not be denied. But the fact is in the choice, and I am lucky to be so bestowed.

“People would sing.”

This week was a tough week. It began with Mayo and the consideration of hard things. It flowed into the work I love and the consideration of more hard things. It ended with the visit of a dear friend, a play at the Guthrie, Thai food last night and brunch with my family today. It was symbolic of the range of experiences each of us is given—honesty, reality, kisses and hugs and songs, or denial without anticipation—gifts each may choose. I get how hard this can be. It is hard for me, for we aren’t encouraged or taught to see heads and tails as anything but opposites. But as my dear friend Ernestine says, “Life and death are just two sides of the same coin.” What I know deeply is that there is a wave of choices coming to each one of us, and we can ride the crest or be smashed in the wake. ALS just strips away the necessity for protection, for protection in the end is only a fantasy.

“What a lucky man.” Cue the synthesizer.


Summer Whispers

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

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

Apparently, all things must pass.

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

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

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

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

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

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

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

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


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.