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.


6 thoughts on “Faith 144

  1. Thank you Bruce, that was beautiful, and made me think about what faith really means to me in my life. Your words mean so much (and they always have!) Thinking off you.

  2. Dear Bruce: There is such magic in your speaking because you are
    speaking to and for so many of us. We “old folks” have bumped into
    so many hurdles that require either going over (which we could have
    done so easily earlier) or around in our power chairs now. We always
    denied their coming but here they are. We appreciate your ability
    to write poetically about our new common weakness, and we are
    so glad there is someone to speak for us in these diminutive-life
    times. Love is the only word I can find when we think of you and
    Ev. Thank you once again, dearest friend. bw

  3. I wish I could have been there and walked with Team Kramer. I remember riding the MS 150 with you and Ev, as I was in training for the AIDS Ride. Know that I am with you and Ev and the rest of Team Kramer in heart and soul, if not in body.

  4. Compassion turned into action. Faith at its best. I am so grateful to all our supporters, and to Bruce and Ev who prove what each of us is capable of doing. More than that, I am reminded of the blesssing of being a soul with human skin. Thank you again for bringing light to my path.

  5. Dear Bruce,
    Not sure if you remember me from Cairo – Charlotte El Shabrawy’s daughter, Nina. Just wanted to send if even spirit support to Team Kramer and to you and Evelyn in this time. Your words, experience are emotionally and intellectually inspiring and enlightening. Please know my thoughts are with you and virtual hugs are being sent in abundance. What a great idea to blog about all of this and what beautiful writing we are all blessed to read. My love to you both.

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