Circling Back

I’m working on three writing projects – the revision of a book with my friend Ernestine, a paper with my friend Sharon, and of course this blog as the spirit moves me. All three of these projects require consideration of my history in dis ease, trolling through earlier blog postings, journals, and even pictures as I’ve considered the past 2 1/2 years. It has not been easy. Sitting inside any former blog entry is grief for some hidden reference, some thing I was able to do then but cannot do now. Inside every picture is an image of me old normal, even when I thought it was new normal. Inside the book revision is grief for the teaching I can no longer do.  Dis ease has taught me that looking to the past brings grief, and that has been my experience, exponentially multiplied as I circled back into the writing, the imagery, the progression, the old me.

Let me give you an example.

A little over two years ago, I blogged about a specific meltdown over clothing. In an entry called “The Fixer,” I described packing for a business trip to Arizona, and of course waiting until the last minute to discover what I already knew–the summer clothing that fit a svelte warm weather old me body was about as relevant to my new ALS corpus as a bicycle for a fish. Frustrated, angry, humiliated, totally off center, you would have thought the issue was a squandered chance at world peace rather than clothing that wouldn’t fit. But the issue was not so much the clothing. Rather it was the inability to bring my old normal skill set of fixing things to bear on my clothing challenges. In essence, I had to face the new normal where fixing didn’t work.

Imagine what it was like to reread this entry. At the time, I was walking, I traveled alone, I could get on a plane, I could go to Arizona, I could drag a 22 inch suitcase behind me, I was still relatively mobile in spite of the fatigue of ALS. As I plumbed the past’s depths, the realization of both my blindness and my prescience washed over me in giant waves of incredulity. I was blind to just how far this thing was going to go, and yet I was clearly anticipating the losses, one by one, paper cut by paper cut, old normal into new normal. You can probably imagine the grief as I read about this person bemoaning his condition, even though he could walk and travel and work and you can probably imagine the grief as I compared what he could do then to what I can do now.

Pictures are even worse.

We are putting together a bike team to raise money for ALS TDI, an ALS research group with a four-star Charity Navigator rating. My son Jon is building the website and innocently, he asked me for some biking pictures. Nothing I can think of ambushes me more than looking at pictures of Ev and me on a bike ride. It calls up all of the joy and fun and closeness of two people outdoors putting in the miles and letting life fall off onto the road. And I don’t want to seem idealistic about the memory. There were times when we were both so tired, headwind strong, hills steep, sun hot or rain pelting that we just wanted to quit. But we learned to get through those times with a lot of encouragement, “You can do this, get on my wheel and we’ll do it together.” My memories are about an equal partnership, overcoming physical and spiritual challenges. Flipping through pictures of both of us so fit, so physical, so happy in the privilege of riding together is an invitation to despair at what dis ease is doing.

Circling back is not for the faint of heart.

One more example is worthwhile. Early on as my physical capability waned, I explored my newly acquired disability in a blog I called “The Look.” I discussed the new experience of being ignored, looked through, unseen. Again I am struck by the incredulity with which I wrote. I couldn’t believe I had been so blind until disability was central to my own existence. I couldn’t believe that other people were so blind as well. I couldn’t believe the regret for my old normal knowledge that I carried in my new normal self. I reread “The Look” with quasi-embarrassment for now the topic seems so much more complicated than it did then.

Circling back is complex. It is hard to look at images from the past, frozen in their time, stripped of their context and feeling, and not judge them too harshly with the sharpened understanding of focused hindsight. I was doing the best I could at the time. You would do the same.

I now recognize that circling back is not really what I have been doing. Instead I have been spiraling down, deepening the experience so that what was once “the look” is now vulnerability, what was once “the fixer” purveying easy one time solutions, must now be “the worker” recognizing the irresponsibility of such acts.  And in the ultimate spiral, I now flip through images of the effects of dis ease on my family and friends and especially my one true love Ev, and my fears were both well founded and inadequate in anticipation of what was to come.

When we are in the moment, it is easy to believe that we own a full understanding of the situation at hand. What I’ve come to realize is that as I move further and further into the experience of ALS, as my family and friends have their own interpretations and perceptions and epiphanies of these experiences, as physical loss and spiritual gain strive for stasis and balance with each other, I am in a spiral of increasing awareness. What was then the complete package, is now incomplete, requiring further analysis, further negotiation and most importantly the humility to recognize the obvious.

I’m never going to fully get it.

We spend an inordinate amount of time trying to make sense of past failures and successes, attempting to control their effect on the future as if such control was attainable.  In circling back, I spiraled down into the person I was, recently diagnosed–still walking and fearing the wheelchair, still breathing and fearing BiPAP, still speaking and fearing eye gaze technology. I am comforted by the futility of such focus. Circling back is walking the very thin line of interpretation and realization, celebration and regret, hope and fear and angst and worry and joy and centeredness.  Spiraling down is all in, outside the lines, embracing the contradiction of knowledge and ignorance in a miasma of fixing and working and looking and vulnerability and imagery old and new.

And it offers much deeper meaning than bicycling with a fish.

Vulnerability in b minor

This past week, I made the mistake of reaching too far, my hand stretching behind me for something beyond my grasp on the floor. In the process, my arm became stuck, lodged behind the arm of my wheelchair, my ability to lift it back blocked by the weakness of my upper body. I sat there for a few minutes feeling really stupid, my predicament slowly dawning on me, panic creeping as the realization that I was alone and there was no one to help me became more and more obvious. I’ve had this experience before, but mostly with my feet falling off of the footplates on my powerchair. That isn’t so bad, as I can tip forward enough to put my foot on the floor, even though I cannot lift it back onto the footplate any more. However, with my arm behind me, slightly twisted, a little painful and growing more so, a mantra of vulnerability began to speak itself, making itself known, rising out of my dis ease like an anthill in a cement crack, first scouting out the terrain and then exploding in lines fanning out in all directions and colonizing my thinking so I could not rationally figure out what I might do. And I will admit to you, I was frightened.

How routine dis ease can become until that moment when it is not, and therein lies vulnerability.

In an unremarkable month, the end of the season’s gray and grit with ashen skies rain or snow indecisive, when spring anticipation is clouded by winter’s harvest of friends and loved ones to death’s embrace; getting my arm caught behind me seems insignificant and small and minuscule. Yet such a tiny happening takes on power and importance beyond the event, and unbeknownst to me vulnerability lies in wait. Slowly, it burrows its way into my consciousness, secure without anxiety or concern that I might or might not traverse its paths, that I might or might not spiral into the traps it lays in this gritty, gray, ashen spring stubbornly clinging to its wintry womb so that the groans of its impending birth are only imagined pleasures. Patient, quiet, dangerous, vulnerability ambushes memories and susceptibility and grief, and I know its name with intimacy. And it knows mine.

Vulnerable. Adult.

I’ve heard the term “vulnerable adult” many times, mostly in the context of old people being conned out of their money or abused by caregivers or lacking the mental ability to defend themselves in any number of situations. And as much as I hate to admit it, I have always associated a certain amount of befuddlement with the label as if it was their fault. So the idea that such a moniker could be applied to me was so foreign, so alien, so out of my old normal perspective that even now its reality seems unbelievable, almost surreal. But this tiny event-a caught arm- interrupted my steady, unremarkable month; and the construct “vulnerable adult” emerged unfolding itself through  tendrils of consciousness blooming in the dragging of my feet, the leaden weight of my useless legs, tripping me up with little hints of air and sound, and calling my name in the same breath as its own.

Since ALS,it isn’t uncommon for old disability ideas to track me down and capture my imagination in themes laden with ignorance and negativity and fear and denial. With silent talons from above, they swoop in unforeseen, leaving me a little more stricken, a little more afraid, a little more frozen in disability myth until the sharpness sinks through my skin and lifts me from the terra firma of my able bodied arrogance, delivering a death blow to one more piece of immortal delusion.

Vulnerable is a term I never thought to apply to myself. It drips of a nonexistent control, of total dependency, of an old normal me rearing up and crying, “Not me, not me ever!” Vulnerable is a roadway littered more and more with dis ease as my capacity for its travel becomes less and less. My body will not be healed, and I cannot see the way home.

The old me would have strategized healing the vulnerability: Whip myself into shape so that no one, no way no how, would be able to see me as vulnerable. Intimidate the vulnerability, outwork others in the process so that they wouldn’t, couldn’t dare perceive any part of me as remotely, possibly vulnerable. But, even without dis ease, I was beginning to see the folly of these choices. After all, as a husband and father, musician, leader and teacher I had ample evidence of growth attained through hopeful and creative vulnerability. Yet, as is so often the case, even after my two plus years of ALS saga, I still return to the powerful grasp of a fearful old normal. And I still struggle to apply the gifts of dis ease in spite of my history.

Old habits die hard, and new spaces can be elusive. Vulnerability requires reframing.

Ten days ago, I had the great fortune of hearing the Bach B Minor Mass on the occasion of Bach’s 348th birthday. This particular work, the culmination of Bach’s choral writing, requires the commitment of a group like The National Lutheran Choir in order to pull it off with any kind of integrity. So, the privilege of hearing this piece in live performance was not lost on me. In order to prepare adequately I watched four hours of lecture by the renowned Bach scholar and conductor, Helmuth Rilling. While he is not the most scintillating of speakers, Rilling is a remarkable scholar, and his interpretations of Johann Sebastian Bach’s choral settings are both academically credible and musically imaginative. I had known how much Bach had borrowed from his previous works, but I was not aware of how conscious he was of going back to his best in order to move forward into what many scholars believe to be the halcyon composition of his career. And in this awareness, I realized the key to fully embracing my new found identity.

Like the B Minor Mass, ALS is my magnum opus. And like Bach, it makes sense to sample the best of my past in order to negotiate this certain yet uncertain future. I have enjoyed the fruits of vulnerability as ALS has progressed; friendships deepened, family love expanded, emotional – intellectual capacity developed. Without vulnerability, it would be impossible to perceive the subtle undercurrents of love’s music. Without vulnerability, the sweet breath of intimacy would lie fallow, row upon row of dust bowl dry plantings instead of fertile green growth. Without vulnerability, the beauty of the intellect, thoughts unimpeded by coarse understanding,would go undiscerned.

Without vulnerability, ALS would immediately kill me instead of escorting me home to eternity.

Matt Sanford reminds us that there are multiple stories of healing. Vulnerability is one such narrative, even when ants emerge through the concrete cracks. And I did eventually get my arm back in front, although there was no trumpet fanfare of seraphim, just a sigh of relief.