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.


12 thoughts on “Vulnerability in b minor

  1. Your post is such a blessing- just began a note to you – missed your words since early March. How vulnerable we all are – and, yet seldom aware. You capture the moment when we recognize that vulnerability – scary and wonderful. Again, your comments lead me to a new space of thoughtfulness. Thank you.

  2. this became my morning meditation today….at our Florida place this week so way ahead of your ashen spring…but way behind you in the new growth that vulnerability has visited upon you…”Without vulnerability, the beauty of the intellect, thoughts unimpeded by coarse understanding,would go undiscerned”….and yes recapitulation in words can be as soaring as a symphony…or as saving as a seraphim…thank you again…glad you are sharing the way with so many of us

  3. There are so many gems in your article. One of my favorites is:
    “Without vulnerability, ALS would immediately kill me instead of escorting me home to eternity”

  4. Thanks for sharing..we can all learn a lesson from you on vulnerability showing our vulnerabilities makes us all more human when we can actually accept them and own them.
    I thought of you when I read this quote.

    “ …and that visibility which makes us most vulnerable is that which also is the source of our greatest strength. “
    -Audre Lorde

  5. Again I read your diary post and re-read ealier efforts. I have shared several with friends and family who reach out for understanding of our journey. I have a slower moving version but recently have been trying to deal with the evolving vulnerability. Thank you for sharing!

  6. Your post was so moving. We lost a friend suddenly this week, she was 65 a bit younger than us and for the first time in my life, I had that feeling of that vulnerability. I could not begin to write about it with the sensitivity you shared, but your post gave me some insight and peace on my own emptiness in the loss of our friend. Thank you

  7. Dear Bruce and Ev,
    This post on vulnerability hits me right in the heart. All I can say is “sigh”.

    It was such a pleasure and honor to meet you both in Rochester this afternoon. The program meant to world to me, my sister, and our spouses – it was marvelous in every way. We drink in your wisdom and perspectives and your words inspire, enlighten and challenge us all as little sister Joan nears the end of her ALS journey. As you said to me today, your individual journeys “will be what they will be”. I wish yours to be much longer as well as loving and peaceful, as I trust it will be.

    Ev, we share being the ones who give care yet feel helpless to change or fix what we’d most like to. This is not easy. We are comrades in a special way.

    And, yes, your son Jon is a marvelous young man.

    Thank you so much,

  8. Bruce,
    You mentioned in your talk in Rochester last Sunday afternoon that your fear is that you will not have done enough in your life to help others. Just as you talked about the splash effect of your dis ease on others around you, I also see the ripple effects of a man fully alive bringing others to deeper life too. Your honesty in vulnerable love is an inspiration to me and I believe its impact will continue to bless countless others long after you and I are both gone. Thank you for stepping out of the safety of your own room to let us in and bless us as fellow journalists of loss and the truly abundant life. God continue to bless you and increasingly be your strength!

  9. Hi Bruce..
    My brother send me this the other day as he thought I might like it as he concluded after watching it that I may be the most connection-worthy person I know. 🙂

    I thought I would share this with you as thought it was interesting and that you might also like it.

    Take care,


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