Faith 144

Thank you for understanding that I didn’t write last week. Saturday was the Minneapolis Walk to Defeat ALS, and our Team Kramer, ably captained by Jayne with incredible support from Deb and Terri and the 144 donors (yes, 144) raised 9400.00 dollars for the ALS Association. The day just blasted my stamina.

It started out as a cold day, blustery and threatening, but as we walked and rolled, hints of sun played our hopes for warmth. Today as I write, those hints have strengthened into an entire week’s worth of weather, beautiful in its autumn heat and sun and blue skies and crisp evenings. We had over 40 walkers associated with TK, and my only regret is that I didn’t get to spend a long time with each one of these dear, dear people. They came from our church, St. Thomas, Ev’s school, our family. Such friendship and love in such close proximity is realized faith, and when I think about it too closely, tears well up, and I just want to cry. Since walking is beyond my most imaginative moments, I rolled in my powerchair, and I have to admit that even rolling required more energy than is available to me–no surprise there as this is the way of ALS.

For me, such events always inspire a cornucopia of emotion. The joy of being, walking, expressing care and support while accepting the same, watching such joy played out by team after team like the waves in a pond from a stone thrown just so, is balanced by the queer knowledge of knowing the bell tolls for this collective whom. Up until a couple of years ago, I participated in these events–the ones designed to raise money for those poor folks less fortunate and afflicted like I never could be–as one with health and vitality, immortal in my own eyes. And in the joyous embrace of loving friends, I had that “Wait a minute,” realization that I really am one of “those people,” and it was disconcerting, an emotional slam onto the mat of dis eased reality that defines so much of my existence, in spite of all my efforts. Meanwhile, I felt this incredible solidarity and sense of surrounding love from so many–cornucopia indeed–a horn of plenty with gifts and harvest and fertility and dances of abundance. And my feelings, even today, are still at odds with themselves, for the presence of ALS was so clear, so focused, so omniscient, even as each individual conflicting emotion shimmered like a tiny package, a gift dazzling to the senses, interwoven and fraying all at the same time, resulting in a complex fabric of humans and machines and laughter and tragedy.

As we walked and rolled the course–a lovely area on the Thomson Reuters campus–the vast numbers of people present for mothers and fathers and brothers and sisters and sons and daughters crowded, straggling the path into a line nearly a mile long. The number of handicap outfitted vans that pulled up to disgorge this small army of power wheelchairs with every manner and stage of ALS afflicted human, accompanied by our incredible loves, carers, friends, supporters; amazed even the organizers of the event. “One parking lot holds a thousand cars, and we filled three,” I was told by an incredulous organizer. Signs dotted the pathway: “In honor of our father…;” “In memory of our mother…” Whole groups of people stopped at these makeshift memorials, the rest of us holding up while they gathered around for pictures, remembrance, holy familial laughter in chaotically organized rituals on the fly. So many of us, strangers in a single space intersecting in a single time, brought together by the seductive flotsam and jetsam of ALS, still rolling the life, heard the insistent whispers, the screes of future family gatherings minus one, and we saw it so clearly, in such a crystalline vision.

I won’t say it. I won’t.

If we believed the telemundo story lines put forth by the sitcom plotters paid to numb us to the messy reality of a life well lived, the human challenges of being would fit into neat, 30 minute packages with 6 to 8 minutes reserved for a word from our sponsor. Each challenge–discrete, finite, easily framed in time–would appeal to our love of limits, the orderliness of the world, where bad is bad and good is good and the excitement is limited to a half hour with time to get up and go to the refrigerator. We love the fact that we can turn such representations on and off, controlling our heroes and heroines and by extension ourselves, leaving us exactly as we were, awaiting the next predictable plot line. We love this industrial order, inspired and orchestrated so that our affect, our sense of pattern and repetition, our hunger for predictability is fed. It is why sports are so popular, for in sports we encounter life’s trials in quarters, halves, finite games where one or the other wins or loses. It is why pop bands that know three or four basic chords provide the soundtrack for our continued life worship. Such liturgy reinforces our faith in a stress-free order, an easy faith framed by predictable ease.

Sometimes it takes a Walk to Defeat ALS to unshackle us from such lazy faith.

I have to admit that as comfortable as I am in my faith, I am uncomfortable in face-to-face discussions about it. Many of us are. What if we get asked about religious background? What if we get nailed down about resurrection, reincarnation, virgin births, wrestling angels, blind faith, questioning faith, faith in suffering, faith in an eightfold path, faith in Akal Purakh, Vishnu, Bhagavan, Allah, Y*HW*H. My experience is that faith is beyond comfort or discomfort, and maybe that is the point. We have no idea what will happen. It is all a matter of faith. The question is whether to acknowledge the faithful outlook dis ease requires, or lose yourself in some ball game three chord framework that tricks you into faithful ease.

ALS is our tiny corner of faith. Millions have participated in events like Saturday’s Walk. On the same day, just a few miles away, thousands walked for Alzheimer’s. How many have walked the Pink Komen, or ridden the MS? On Saturday, hundreds of us converged, our once familiar bodies translated into the faith language of our collective dis ease. Thousands of us united, families, friends, colleagues reinterpreted by the faith language of our collective dis ease. And like all these others–Alzheimers, Breast Cancer, MS, MD, Heart, Kidney, Liver, Spinal–this faith that brought us together defied simple definition. Our faith in friendship, family, love, faith in this God-given gift of a future that our past denies, confronted the faith of ease, and embraced the very difficult commitment that dis ease instills. Some of us believe in God, others in Science, and others proclaim no belief at all. All of us believe in the aching gut wrenching ALS reality that has invited itself into our lives, and our faith in dis ease’s progression is unshakable, firm in its foundation.

But 144 of us had enough faith to give a little something of ourselves, just to try to make it all a little bit better.

Despite and Still

Let me begin by putting the facts up front. Life does not get easier. The challenges of youth and young adulthood are only the beginning in comparison to the challenges of aging. And ALS is life’s challenge exponentially expanded. Where the normal life gives us the illusion of plateaus in its march from death to birth to death again, where the aging process is less noticeable until it takes place, where the normal progression gives the illusion of control, ALS grinds all illusion under it’s heel into the gritty ash that our bodies become. It speeds the process so no respite is available, at least it doesn’t seem so. It just gets harder and harder, and there is barely time to catch your breath.

Writing mirrors these facts. I write in my head on Friday night, perhaps a sentence or two on the screen, tired and grieving and vulnerable words worn down by the week that was. Saturday I speak truths of frustration and sadness and guilt and anger with a little humor and happiness thrown in for good measure into a microphone that still needs guidance about what is truth, what is poetry and what is pure conjecture. And if all goes well, Sunday hints at just enough grace to plunge once more into the breach, at just enough strength to handle the living that is harder and harder to undertake. And each month of the last 22 months, each week since I was born again into dis ease, I need Friday night to start earlier and earlier just to find the strength for the next round to come.

I know there is nothing profound in the facts. Dis ease mocks profundity.

I have been working on a project for our alumni magazine about living (and dying) with ALS. We are down to the final details, making sure the facts square up with the story. It requires negotiation and attention, and not surprisingly a little bit of compassion. Negotiations and extra attention are to be expected, but the details themselves are quite instructive, for in those details are the consistent and layered lessons loss teaches. I say consistent, because my experience since ALS’s arrival is little changed. It is almost impossible to deny my primal reactions to the day-to-day normalcy of dis ease’s cost. But the multiple strata of these reactions, the layers, are what make this so complicated. This week, that point was brought home to me over and over again. Dis ease exacerbates the primal scream, and humanness seeks to layer multiple veneers over the reality. But ALS creates the conditions where living is significant meaning much more than I ever thought possible.

I know I shouldn’t be surprised by these lessons in humanness, for their consistency to horrify and delight is always present. At the beginning of my ALS life, I thought, even as I lost more and more physical function, if I remained open and transparent about its progression, there would be a broad comfort level exhibited by all of those who found themselves within my dis ease sphere. In many ways, that has been the case. Friends and loved ones stick with it, stay with me, work with me. And the task is hard, plugging eleven leaks with ten fingers hard. It is hard not to allow concern to leak from the back of your eyes. It is hard not to allow fear to leak from the pit of your stomach. It is hard not to allow grief to leak into your voice. And it is hard for me to remember that concern, fear and grief are not personal, even though on one level it is all absolutely personal.

And personally, I believed my own primal reactions to ALS could be mitigated by my stark honesty about it. Similar to my friends and loves, I thought that openness would make me more comfortable with the physical loss. And like my hopes for my peeps, my hopes for myself have been somewhat realized. But it has been hard for me too. The fact is that my knowledge of how hard it is to hold concern and grief and fear at bay is also prone to leakage, from my eyes, my gut, my voice. And this is absolutely personal.

If I am honest, transparent, liquid in my acknowledgement, openness has not held the bad stuff at bay, but it has allowed me to look it in the face. Even when I strive to deny its presence, ALS is listening, breathing, sucking life, cravenly mocking the grace, the peace of the moment, with the comparisons to the man I was. Even when I lose myself in some beauty, some musical wash, some worthy challenge, the blessing of God, the spiral inward, breath and velvet, consciousness of the unconscious – ALS is just out of sight, of hearing, of feeling, but not out of the way. There is no respite; just slow slippage down the dusty gravelled sluices and wadis of my own personal desert with a hint at the waters to come, though all is sand and dust and uneven footing. There is no getting away from it. It is always with me. I own what is mine, and I own what I project onto others. And I know dis ease’s direction.

Our local ALS Association has a respite program for caregivers, up to 18 hours per month where a caregiver is encouraged to take time for himself, herself, to exercise, pray, read, walk, get away, but not too far. Such a gift born of need for time and space—who would not require such a thing? A gift not for recovery, but for respite—just a little rest to find the strength to come back, to return to the space where the presence of ALS overshadows all things. Greater love has no person than this.

Sometimes, I would give anything for an hour free of ALS shadowing my room, my loves, my friends, the air, the stars.

The facts, dressed in their Joe Friday monotone, are still the facts. Each day, we are given choices. The choices accumulate, their effects bringing focus, the focus sharply delighting, frightening. Denying the facts, the accumulation, the choices, the focus is tempting, but counter productive to the needs of recovery. It is a work in progress that requires progression in the work. The stare ahead, raw stark feeling of Friday gives way to the voice of Saturday to the point on Sunday where it can be revealed and worked and embraced. And Monday can come again to slip into an earlier and earlier Friday, until Friday is no more, and nothing remains but Friday’s ether. The facts are lovingly aligned. To paraphrase Robert Graves, facts are gentle, and I am rashly honest. Yet we continue and love and live, “despite and still.” To choose otherwise would be loss greater than any dis ease we might imagine.

And I can dream of when ALS no longer crowds my space, despite and still, though there is only one path to the fact.

The Winds

On the first weekend after Labor Day, the sky is clear and the winds carry that unmistakable taste of autumn—a tang of tannins and a hint of plant matter, somehow pleasant yet foreshadowing winter’s icy cold.  More than just a cooling breeze, these winds are open the windows winds, rattle the shades against the frames and sills winds, rustling rearranging paper long accustomed to an undisturbed piled existence winds.  They are lifting and twirling, cooling and clearing winds, and while they reorder the physical space in which I live, today they also reshuffle my psychic space so I now need some kind of grounding weight to keep me in place, to hold me centered here and not blow into darkened dwellings. The loss experience defined by ALS is an autumn wind chained to the feeling and thinking and desiring and doing that defines the person I still want to be, yet symbolizing a dis ease power to strip all coping away, leaving naked experience shuddering and jerking like chimes wildly dancing in zephyred abandon so that vulnerability and chaos emerge in the autumn to winter smells—tannins and plant and crunch and sun.

Occasionally, I dream of biking these head winds, more a dream of the feeling of wind, gusts against my face, whipping my hair, pushing against me as I ride, its resistance torking the bike frame and gearing dusty grit that stings my shins and bounces off my eye shields into the crank and chain and derailleur.  Pre-ALS, when I rode to and from work, home was against the stiff west winds that whistle into the Twin Cities with nothing but the prairies between their somewhere in the Dakotas life source and the urban cosmos that finally trips and funnels them into so many swirls of channeled currents, playfully strong.  I used to think of this as a trial to be accomplished, and there were many evenings I found myself lowering my head, pushing hard to push through, the wind resisting my efforts, though eventually allowing me passage. How I wish I had seen the wind for what it was—a statement of health and empowerment and strength, rather than another impediment to an easy ride.  How I wish I felt that empowering resistance again.

What I didn’t know!  

Sometimes in the middle of the night as I rouse from first slumber—lusciously mid-conscious between sleep and wakefulness, thinking I have been riding against these winds, believing for just a moment that ALS is the stuff of dreams—Ev rides on my rear wheel, drafting off me.  I experience the joy of blocking for her as we careen our way home.  Such vulnerable moments, for when realization dawns, the head wind ride retreats into the recognition of fading memory of activities still present in my dreams but utterly gone from the physical being that I have become.  As if to punctuate the loss, my legs are now even heavier, my arms and hands weaker, my ability to adjust and turn in bed lessened and my joints and bones aching from sleep’s position held too long.  I hear silent weeping in my mind, and I realize I am crying for what cannot be again.  Sometimes, Ev hears it too, and she pulls the covers back over me, adjusts my pillow and kicks the cats off the bed, pats my arm and falls back to sleep only a little disturbed.  Such is the stasis and peace out of dreamy regrets. 

In waking, I draft on Ev while she positions herself between the headwinds of life and me.

This week, in the face of what would have been a mere challenge in my old normal life, the winds of ALS stripped away all pretense that I still own such capacity.  I have known this truth almost since the day of my diagnosis, but as the human I am, I often need to be reminded of the fact.  I spent years constructing all kinds of facades, persona, roles projected as needed for the task at hand.  It was almost like being an oversized, organic iPad.  Does today call for quiet confidence?  Whip out the app and take over the room.  Is it time to project suitable irritation at bureaucratic stupidity?  There’s an app for that too.  “Applied Pretense”–what one reviewer calls, “the app you really cannot live without,” is available in the App Store with an average five star reviewer rating.  But ALS, like the autumn wind, blows all this technique, techné into the dustbins of failed humanity.  If you approach your life thinking there is a suitable screen that will take care of it, ALS becomes the vortex that dashes that screen into smithereens, drilling you down to the essence of your being and voiding any such cover you might have thought you owned.  

The purity of a life imposed upon by ALS makes the apps approach to success irrelevant.  It exposes the gold of life experience like a refining fire consuming the dross we work so hard to project.  If unrelenting stress is bad for human beings, then ALS makes conscious the reason why.  For me stress has become the purely physical phenomenon it is—body shivers with increased muscle fasciculation, narrowed eyesight into tunnels of diffuse yet centered light and darkness pressing in and around.  And once through the initial angst, I am exhausted beyond all physical belief to where I can only lean back and try to sleep enough of it off to bestir myself only a little bit.  Stress is cumulative, but only with dis ease have I truly known its accumulation. And with ALS, coping mechanisms such as a nice swim or run, or yoga pose to clean it out is impossible.  Like the wind, ALS rearranges the environs, sweeping clean any pretensions of control over the stresses of day-to-day living.

In “The Windhover,” Gerard Manley Hopkins speaks the power I know in these blasts and gusts:

As a skate’s heel sweeps smooth on a bowbend: the hurl and gliding 
Rebuffed the big wind. My heart in hiding 
Stirred for a bird, — the achieve of, the mastery of the thing!  

Brute beauty and valour and act, oh, air, pride, plume, here   
Buckle!  AND the fire that breaks from thee then, a billion 
Times told lovelier, more dangerous, O my chevalier!

Big winds blow through life, and I so wish I could be the skate’s hurl and gliding that rebuff the squalls and gales of their concentrated air.  I have tried to keep my heart in the open, stirred by “the achieve of, the mastery of the thing.”  But life experience now has such intensity, that to experience it in such purified state overloads any capacity for control I might believe I have.  My ability to project the iPad app screen of applied pretense wanes, leading to a new space of taking in only what I can receive, a little at a time.  Autumn moves to Shakespearean winter—“Blow, blow thou winter wind, thou art not so unkind as man’s ingratitude…” 

And I must learn to be more thankful for the blows to come.

Labor Day

It is Labor Day Weekend, three days celebrating work, workers, working. In Minnesota, most educators spend this weekend in last minute prep for their upcoming teaching, finalizing lessons, tweaking syllabi, deciding that last activity to make the first class session a little extra special. For me,this weekend requires significant time preparing opening comments for our academic year, trying to put something together that strikes the balance between serious direction and opening year excitement. Today, I feel the tug of the school year calling, and my feelings are complex, a mix of gearing up and shifting gears. Dis ease requires a zipline of up and down energy that is at odds with the labor traditionally channeled into this weekend. But I still find myself working to bring one more beginning into the fray, one more lesson by the great teacher in my life, one more Labor Day in which the labor is rewarded with the prize of anything and everything ALS.

I am keenly aware of the etymology and multiple meanings of labor. The holiday is about the noun, whether we are talking about the person who accomplishes the task, or the task itself. But today in this time of ALS, the richness of labor’s etymological genome is in the verb. To do something with great effort, to totter under the weight of the work seems to acknowledge dis ease’s exacting teachings. Tottering and effort are the honors ALS insists will be bestowed far beyond parsing the meanings between noun and verb.

In these labors, we honor work.

I love the whole concept of honoring work, for work has always honored me. Once I realized how hard I would have to work–for my education, my living, my family, my music, my exercise, even for the intellectual forms guiding my thinking–a life-choice presented itself. Either I could find the joy in hard work or I could resent it, and early on I admit that my disposition toward work ranged closer to resentment. But as I matured, I consciously chose joy for the most part, and I hope that those who knew me, who still know me, remember our time together as mostly joyful, because the work together was energizing. For me, even leisure required hard work. Most people would probably find the level of planning I needed to create a vacation space antithetical to the goal, but working so leisure could occur was a joyful premise in which I willingly and enthusiastically participated. Truly, the idea of honoring work and workers hums like a spinning plate in my psyche.

Up until 2010, Labor Day Weekend was a time Ev and I would traditionally seek to balance the work of preparation with the work of play through long bike rides in southern Minnesota. We rode wonderful adventures in our annual last big bike of the season. Headquartering out of Preston, we loved riding the Root River Trail, especially east of Lanesboro where the trails were ours for the taking. I still hold in my heart a picture of a road weary Ev sitting on the grass in Waylon eating the last ice cream cone sold at the pie shop on a warm Sunday with 14 miles left in an 86 mile day. Later in the ride, we were held up by a Minnesota rattlesnake sunning himself on the bike path, and we flew the last eight miles to Preston like a hot wind awaiting soothing whirlpools and air conditioning, inspired more than a little by rattles and fangs and the irritation of a snake forced to leave the sun for the brush by impatient riders with 15 foot long branches dancing encouragement around it. The last time we rode, it was a time for listening to language we didn’t understand, the last 30 miles with me playing catchup, and Ev thinking I was just being nice. We worked to play, and we always brought home apples and corn and summer’s last melons for that last summer meal of the season. I would cook, and Ev would bake apple pies to honor the upcoming autumn and to fulfill a Christmas promise gifted to our sister-in-law, Hanna.

I have learned through experience that this weekend is a time to get out of the way of the work needs of my one true love. For her, Labor Day carries that delicious tension between utmost readiness, unfelt preparedness, and the inability to predict the full needs the children will present in the first week of school. Of course, within a couple of weeks, she will have the kids pegged–who will need “the look,” who will need kid gloves, who will need coaxing, who will need reins and who will need giddyup. It is a loving endeavor not for the novice or the faint of heart. And I will live vicariously through the stories of delight and weariness she shares, at least once she has made the recovery she needs upon home arrival. There is nothing like the work required to unlock a child, and there is absolutely nothing like a child with the sudden epiphany of new knowledge. Ev approaches this task as the sacred trust it is, and I cannot help but note the light she shines even when she is exhausted from pouring herself into her teaching.

My work focus this weekend is habitual and necessary. The sun will splash into our little den, windows on the east and the south, and light my way through multiple and disparate resources. As I struggle to bring them together in a coherent narrative, reflecting on the privilege I still feel for the task ahead, I must resist the temptation to make this weekend’s preparations more than they are. It may be my last time for this particular work at hand, but it is no more special than years before, and it doesn’t mean this time will be any more profound than any other time when the work was less perceptible for its meanings. I have a habit of imbuing beginnings and endings and last times with greater meaning than they possess, and I need to circle back to labor’s truths–the honest liturgy, introspection, worship–no matter the meanings dis ease projects.

I still strive to bring the holiness of work–of working–into what is coming in the minutes and hours and days ahead. The requirements are not so different from before–constructed focus walking the line between seriousness and excitement–and yet the requirements loom as work for which I suspect I will never demonstrate complete mastery. Work is not so much about labor but life, and life is not only what we have done, but how we do it. When dis ease overwhelms, reframing its effects is always helpful. This week, the future is dis ease work, hard work that requires all I have learned from labor’s lessons in teaching, leading, artistic expression, spiritual knowing. It is a future that requires the ultimate in work ethic, with no space for any less than all in. I hope I will meet its challenges, engage its possibilities, realize the person I have sought to become, even as physical functions become impossible, abilities no longer realized except in the challenges they present. Labor is nothing more than the faith that what will be is ultimately joyful, even as diminution seems to call for sadness. I know this mystical presence, for it teaches me that labor is not stern control, but chaotic love.

And in the end, as with all our labors, life has this odd ability to work itself out.