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.


The Holy Spirit or, In Praise of Kathy Hult

In the past few months, I have explored spirituality in a way that admittedly pulled its spiritual punches. I have talked about the human spirit, the spirit of courage, the spirituality that exists in a beautiful day. I have explored the spirituality of ALS, and I have explored the lack of spirituality in a culture that seems to believe in its own immortality. I guess part of the reason for my more descriptive narrative is that I have lived among so many different religious traditions in my life, and to proclaim THE way seems mostly counterproductive. After all, who am I to argue the relative virtues of the eight-fold path versus the way of Islam versus wrestling with God versus walking the extra mile versus the double-blind placebo controlled study of High Science? I have witnessed the subtleties and exaggerations, vices and virtues of all these approaches, and I can honestly say that if I don’t get too hung up on the nuances of language, it is possible to see holy spirit working in each of them—no matter what the frame of reference. What I have been circling around is the fact that dis ease is a holy endeavor, and if you cannot perceive the spirit that walks in a chemo drip or a slow loss of muscular function, then you are missing the great companionship that walks along beside you.

Next week in Minneapolis is the Walk to Defeat ALS, and I am sorry to say that with all of the things going on in our lives, I haven’t put a team together to support it. I have always liked to do things like the Walk—just a little over a year ago I rode the MS 150. I love the symbolism of walking to support the cause, since so many of us PALS cannot get around without some assistance. I love the fact that it will raise money for both research and support. What I really love about events like this though is the spirit that walks along with the participants. I remember last year on the MS 150, there was a point where Jon and Kirsten and Katie and I were just grooving in an 18-19 mph train that, each time it started to falter, another of us would move to the front and take the lead. Truly, the road rose to meet us, and the wind was at our backs. If this isn’t holy, then I don’t know what is. In the backs of our minds were the people that we were riding for—people with MS that we knew. So I feel a little guilty not putting together a group for the Walk. And of course the MS Society is a big group with a lot of resources and public face. The Walk does not get a lot of publicity, no local television stations have picked it up, there isn’t a celebrity that will be at the starting line, well unless you count the exceptional Kathy Hult.

You are probably wondering who Kathy is, and I have to admit that I didn’t have a clue about her until I started researching the Walk to Defeat ALS. You see, Kathy Hult is a PALS, and she was instrumental in the founding of the Minneapolis Walk. In the last eleven years, her efforts have raised over four million dollars for the ALS Association. When she started, she walked with a cane and though her dis ease progression is slower than most, she is now in a power wheelchair with a dog helper. Not only has she worked for ALS, she has also worked for the group that helped her to get a dog companion–Helping Paws. She was just honored locally as one of “Eleven Who Care,” and no one deserves the honor more. Here is a woman that, no matter what you believe, shows a spirit that is truly caring.

It is so tempting to write the “when life gives you lemons, make lemonade” line at this point. Kathy Hult is doing what I think all of us hope that we would do in the face of overwhelming difficulty, and she certainly personifies the lemonade of humanity. I love people like her. Inspirational, strong, down to earth, Kathy Hult has worked with a spirit that many would call holy. She has made the best of a bad situation, and I really admire her for it.

At the same time, I cannot help but think about the things that no television special will ever relate. For Kathy to get ready to go out, for her to get dressed and ready for the day, takes enormous effort. I know this from personal experience. Just the act of trying to get legs through pants and socks on feet, just brushing your teeth and washing your hair, requires enormous energy and time to rest from the effort. And this is the thing that I think is important for us to remember. It is easy to put people on a pedestal when they show us the kind of courage that Kathy Hult shows. But make no mistake about it, the courage is not in organizing the Walk, it is in getting out among people even though you know what it is going to take, just to look a little less like dis ease is your constant companion. It is the willpower that she shows by getting up and engaging in activities that will help other people. This is no lemons to lemonade story. It is praise for hard work, perseverance and gumption. It is praise for a spirit that you are either open to, or you shut out. In the ALS world, a walk with the holy spirit is about all you get, and you can choose to walk with her, or you can stay inside. Kathy has chosen to step out with the spirit at her side, and courage in her gut.

Ben Harper, one of my favorite preachers, sings, “When my legs no longer carry, and the warm wind chills my bones, I will reach for Mother Mary, and I shall not walk alone.” And here is the point. There is no place in time when we are ever really alone. It may feel like it. It may feel like we are walking in utter isolation. But if you just listen to melodies on the breeze, get in a bike train, gaze into the eyes of your own true love or wrestle with God, you are with a spirit that knows no boundaries except those that you impose. There is spirit in the cancer, and spirit in the cure. There is a holiness that, if we are just a little open, we can smell, taste and see. This is the point that I should have been making. It is in people like Kathy Hult, and it is in you, no matter the chill of the autumn wind. None of us need walk alone.