On Monday evenings, my son and daughter-in-law take me to adaptive yoga at the Courage Center. It is a remarkable experience; you have never seen so many challenged bodies in power wheelchairs guided in yoga by such thoughtful teachers. The founder of this adaptive yoga is a man by the name of Matt Sanford. I will not relate here his life and calling; he tells his own story far more profoundly than I possibly could. A masterful teacher, Matt’s story is unapologetically human.
Matt teaches from his wheelchair, asking from us a practice of yoga that is thoughtful and demanding. He stops and corrects and questions and observes, skillfully engaging each of us individually. Matt freely admits little experience with ALS, so it should have been no surprise that he asked me, “What does success in yoga look like?” I was in the middle of modified sun salutations, my son and daughter-in-law on each side of me raising my arms and helping me to drop down while lifting my chest, drawing in a centering breath. My eyes were closed as I sought memory of the motions required, forgetting that there was something of equal importance outside. I stopped. I thought. And I answered, “I guess just being, here, in this place is success enough for me.” It wasn’t quite what I meant, but it was the best I could do at the time.
Silence, then, “I guess I wasn’t expecting an answer quite on that level.”
I’m not sure what he meant, but I know the experience of asking a question and receiving an answer from a different place. He asked the question two more times that night, each time causing me some internal turmoil. After all, ALS and success are not often tied together, but the struggle was instructive and in many ways symbolic of a week that was.
Last week, I experienced one of the highest highs and one of the most humbling lows since my diagnosis. And somehow, the consideration of success coming out of my yoga course, in the presence of a teacher who I do not yet know excepting his authenticity, seems meet and right and totally appropriate. Last week, many members of my former church choir showed up to surprise me with a gift of song. Last week I ended up in the emergency room; my non cooperative body further refusing to cooperate.
How wonderful it is to be surprised by song from people you love. A lifetime ago, we spent such meaningful time together—they put up with my jokes, my cajoling, my coercing, sometimes my overbearing personality, and still found a way to make beautiful music. They gifted me by singing three pieces sung together so many years ago, and it was absolutely divine. They sang so well, incorporating small but significant interpretations that we had arrived at together, echoes of music that still resound within my deepest meditative soul, polishing the sheen and shine on these three choral jewels that were and remain expressions of the beauty and possibility humanity can glimpse through the artistic endeavor.
Of course, I blubbered and cried and sobbed with joy for life so blessed that friends would sing for me.
And there was more to it than the singing, for I had not seen so many of them in years. What a commentary on the pathways of life this was. All of us had been lost and found in life’s ever-divergent paths – children and history and marriage and divorce and new careers and no careers and sickness and health and emotional upheaval and moving on. I wish I would have had the strength to insist they stay the hours until the evening had ticked away one delicious second upon another, but my beloved Ev had forewarned them that my stamina is compromised. And so they lined up and one by one took my hand and talked a little and reminisced a lot and cried in unison and harmony and love and affection, a sacred polyphony of friendship built upon the beauty that making music together spawns.
To see them all, to hear them all, to breathe them in as one would inhale spring after a gentle rain and a drying sun, lifted my heart for just a moment into a place that I know still exists, even though I do not perceive my presence amid those lofty arches anymore. Thank you Judith and Andy, thank you all – my beautiful beautiful singer friends.
But balance mandates new lows, offsetting such a soaring high.
One of the afflictions for anyone who spends the majority of their time in a wheelchair is plumbing mishaps. The details are not important, except that two nights after the beauty of my choral gift, Ev delivered me to the emergency room of a local hospital, hoping to address the pain and dysfunction of a body that refused to operate normally. By the time I reached the hospital I was physically exhausted and emotionally drained. And over the next several days, the fear of going back and the recovery needed from the physical manhandling that must take place in an emergency room situation was my reality, my raison d’être, my conscious being.
What do you think success looks like now?
By the end of my yoga class the question arose two more times. I was tempted to stay in my ALS space clumsily describing physical progression, cautiously retreating from any activity that might result in pain or damage. The space was safe and the advice was prudent, not profound. But deep learning does not take place in comfort. With one phrase, my teacher opened vistas of possibility that my body might occupy even as physical capacity wanes. With one phrase, my teacher reminded me of the balance and the center when we accept the unity of body and mind and spirit and life. With one phrase, inner and outer, horizontal and vertical, down and up, reflection and narrative opened up the holy possibilities before me.
“You existed before this,” he said.
At the very end of the class that was far more physical than I ever thought possible, at the very end of the week that had left me soaring in the emotional stratosphere and groveling in the ditch of human existence, at the very end of a day that had left me so tired that I was searching for every excuse not to attend my class, I think I glimpsed what success looks like.
In my life, there will be ALS, not to be fought, but rather embraced. Now ALS is me and I am him. He will require all manner of experience that feeds my soul, balances his presence, and moves me on into the next challenge. In so many ways, life with ALS bears remarkable similarity to my life before. It is always about balance, and balance is only achieved on the sharp end of the needle threading its way in and out of the cloth of the task at hand, and binding new threads to old fabric.
Friends sing, and bodies break, and courage is centered in existence before this.