Eventuality

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

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

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

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

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

Sometimes, epiphanies are so quiet they scream.

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

My problem has been me.

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

Why didn’t I figure this out earlier?

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

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

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

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

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

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.