What Does Success Look Like?

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.



“There’s a darkness upon me that’s covered in light.” –Seth Avett

In the course of my dis ease journey, I have tried to be honest about my experiences both good and bad, days of darkness and days of light, pleasant breezes and rainstorms. I say “tried” because in all honesty, my truthiness score is probably in the 90% range, mostly due to the omission of certain facts and details and not by speaking actual falsehoods. So, I must now admit to you that the last three months have been more darkness than light, more rain storm then pleasant breeze. Don’t get me wrong, I have had moments of supreme happiness, wonderful times with family and friends, but as I feel the physical effects of ALS compounding upon themselves, as I am more and more aware of my inability to mitigate the symptoms in any way that is more than palliative, I recognize an emotional hood, often dark and debilitating, pulled over my vision. And even on a sunny January day, life can feel grayish, like the yellowed air of a city that over relies on coal to cook and heat and light.

I have never bought into Cartesian mind-body duality, so the overall effect of this gritty sulfuric vision is  integrated–psychological, emotional, social, physical, always physical. I suppose my friends in the counseling world would say that perhaps I am depressed. But this integrated effect is not depression. I think there is a better word, a better way to frame this holistic overarching ALS filtered life. I prefer to think of it as diminished. In spite of all the emotional, social, intellectual joy that I feel, the fact is that the physical overwhelms, playing a cruel trump card.

Parenthetically, my former administrative assistant Mavis would probably remind me that I often suffered the symptoms of seasonal affective disorder at this time of year, even before my ALS. She would ask me, “Why do you think it isn’t SAD?  Hmmm?”

Taking stock of the physical, there is much that reflects diminishment.

Sleep is inconsistent, mostly due to the fact that I must lie on my back, unable to move unless Ev moves me. This results in searing, burning sensations in my feet and psychological feelings of being trapped, unable to mitigate the pain.  If I can sleep through this it is a good thing, but there is always the chance that a bad night is ahead:  Diminishment.

My torso and my neck have weakened to the point where in the evening I must be very careful about the angle of my chair or my head will tip forward, and I will be unable to raise it.  And my legs are now completely useless. I have no physical capability that would allow me to meaningfully use my legs or feet in any way:  Diminishment.

My breathing is also affected. I am not able to cough or sneeze with any authority. I am unable to force air out of my lungs in a sudden fashion. Likewise I am unable to get the breath support underneath my voice that would allow me to project in a meaningful way. I yawn often, and I can nod off at the drop of the hat. My energy is way down:  Diminishment.

The drug trial in which I participated for the past 18 months has been declared a failure, so we still have only one drug that has shown any efficacy toward treatment of ALS. Forgive the pun, but this one was a hard pill to swallow. Of the 3 to 5 most promising treatments in testing, two look to be washed out and a third lacks the financial resources to take to phase 3. It is physically disappointing and psychologically frustrating:  Diminishment.

I no longer type over any length of time. This blog is my first totally dictated, including most of the editing. I’m sorry for that, as the dictated voice sounds so different to me from the one that emerged from my hands just a few short months ago. But with typing, a single paragraph can take hours, and neither my hands nor my arms can functionally maintain the distance from the keyboard that is required for any meaningful time devoted to the task:  Diminishment.

My arm and hand weakness means that within the past week Ev and my caregivers have actually begun to feed me full-time. I am not looking forward to communicating this fact to my lunchtime friends. They come so cheerful and hopeful, and knowing that I will have to communicate my inability to feed myself, feels so disappointing to me.  Usually, I cannot reach my head or legs to scratch–I can feel the itch, just not do anything about it:  Diminishment.

Yet, diminishment is not depression, overarching weakness is not an overwhelming loss of strength, drugs are only the first line of treatment, and I am not dead yet.  There are stabs of remarkable lightness, underscored by the lights of family, friends, and breath.

At the encouragement of friends and family I started adaptive yoga the day after Thanksgiving, first on Fridays, and now Monday evenings. Adaptive yoga allows a person with disability to find centeredness through restorative and strengthening poses and breathing, always breathing.  During each session, the darkness lifts for a few moments, my sense of breath increases, the compacted feeling that comes from progressive physical loss and over-reliance on mechanical wonders such as power chairs mitigates into light, reaching out beyond the confinement, and even though I find myself conscious of another loss and another each week and each, I am also aware of divinity within, each of us communing through Holy Spirit in breath and pose and selfless friends and teachers lifting us into divine spaces.  Invariably, joy and tears combine for me each session.

And then there is church. I go to sing the old songs in ways that will never approach my old ways. I go to contemplate and to pray and to meditate and to think upon the great metaphysical questions. I go to greet friends and to receive kisses and hugs and smiles and yes, a little bit of cooperative mourning from believers and curmudgeons alike.  A smile from one of my former choir members is always a shaft of sunlight in the roiling clouded darkness.  And like yoga, I go to church to mix laughter with tears.

And when my family descends upon our condo for cooking, filling the place with redolent spice and roasted garlic poblano smells, meats and wine and beers and passion–passion for eating and passion for each other–I am filled.  Animated discussions, laughing loving appreciation for music, awe for artistry, or irritated disgust with NYT columnists, blowing their arguments to smithereens, lift me into tears and life over ALS.  Even when we just kick back with a movie or a game, all I need is the being of family.

All of this is to say that I get Seth Avett’s profundity.  The Avett Brothers embraced darkness and light through their own support of a colleague and friend until he died from ALS.

If you want to call this depression, please know that I cannot. For me, it is life ordinary, pulling back and pulling in of life lived large.  And even though it is dark in the space, I know that light exists, and that there will still be times where my spirit will soar. It is hard not to think about death and leaving and loss and grief and pain. As I diminish, as I wind down, as I slowly circle back, how could it be otherwise?

See, it is just living until I die, or the last 10% of my truthiness.


Let me preface this entry by saying that it has become more and more difficult to write the thoughts, feelings, observations that wheel and turn and fly inside me, not because of writer’s block, but as a result of the natural progression of ALS. My arms and hands are more and more affected, and the energy required to pay attention to something so personal, so intimate as the revelations that writing brings, often overwhelms the energy that I possess. This breaking body continues to slow, to diminish, to wind down into that meditative state where thought and music and the sound of my great grandmother’s clock’s ticking on the mantle defines the hours of a good day. I began this entry over ten days ago on December 29th at 4:51 AM, and I am just now coming to this place where coherence is a remote possibility. It has become more and more difficult.

At 4:51 AM, sleep is not easy or undervalued. On any given December 29th, the dust of Advent’s month-long anticipation has crumbled into eyes and ears and nose and throat as a childhood visit from the mythical saint collapses into adult understanding of how the world really works. It is time to wipe December’s dust from the house and get back to a life shorn of its tastefully lighted displays, it’s hoped for anointment of the chosen ones each of us is, versus the chosen ones we wish we could be. I need to kick off the dust from collective dreams and get going again, quit wasting precious time with false messiahs, get the rhinestone encrusted re-gifted refuse back to the brains that spawned their manufacture, find the direction that means something more than the animated fantasy and the commercialized shouting that seems to frame December’s silent nights. At 4:51 AM, sleep is replaced by lumps of coal wakefulness. At 4:51 AM, dis ease raises the great questions of time immemorial.

Dis ease brings diminishment, and diminishment brings contemplation and consideration–consideration of the present, the moment, the here, the now; and consideration of what lies ahead, the gifts of living and the gifts of dying. Dis ease inspires contemplation, even when the dis eased space seems skin numbing, energy sucking, apathy producing. Dis eased existence explores and considers endings, post-apocalyptic howls, heavenly hopes, hellish fears, the great void death indicated by musings and amusement and fantasy and religion. It is a mighty tale, and none of us gets out of it alive.

At 4:51 AM on December 29th, I am dis ease, and the great questions loom. I make my own forays into the here and after. I consider life and I contemplate death.

The frameworks of near death might apply to the questions of near life, at least that is what Proof of Heaven, Dr. Eben Alexander’s book describing his near-death experience says. And simultaneously, the musings of Christopher Hitchens upon his own impending death from esophageal cancer in his final essay collection Mortality, serves as a tome to empiricism. Each is a corrective to the non-empirical, non-triangulated narrative of the other. I consider each framework. I think and conclude and realize. Neither is adequate to living until I die.

At 4:51 AM, experience tells me to embrace the great beyond and reject the arrogance of descriptive certainty.

I have come to a point where I don’t trust any so called insider knowledge of the afterlife as definitive or perhaps even relevant. This is not to judge the truth or falseness of the claim. Rather, it is an acknowledgement that the claim to have seen the metaphysically unknowable, that which is beyond our own physical ability to fully comprehend, to have special insight into the nature of life after death, is more than a little disingenuous. In so many of these descriptive narrations, especially Alexander’s, there is an admission as to the inadequacy of the description because the experience is so indescribable, yet claims are stated with a tension that ranges from the purely charitable to the overtly profitable, and the profit makes me skeptical. And of course, there is no way to empirically check the accuracy of the descriptions.

But reading Christopher Hitchens’ reflections on his own 19 month journey with cancer, while it speaks a truth that I now experience, also denies the truth that sensory perception is incomplete. Hitchens actively documents the breakdown of his physical body, the fog of his chemotherapy, the very real and specific bodily harm his cancer wreaks upon him and all that love him. And of course, Hitchens is the consummate atheist. He reminds us often that he expects nothing except the experience that he currently knows. And Hitchens’ writing makes me think–if all we trust is our own empirical observations, then the deaf person must deny sound, and the blind person must deny color.

At 4:51 AM, on December 29th, the question is not as easy or defined as Hitchens’ realism or Alexander’s NDE capitalism, and ALS remains an overwhelming presence to be welcomed or denied, but never ignored.

ALS gifts its recipients with a remarkably different feel to the great questions. To circle and swoop and louver and spiral and wind down the physical body, limb by lung by language, is to wake up to songs and symphonies, dances and divinity. The gift of mortality is always edge of consciousness present, if not always consciously appreciated. And it doesn’t grant me or my brothers and sisters in ALS any special knowledge of eternity. Our limitations are the same as anyone else’s, mediated by imperfect intuitions, shaped by smell and taste and touch. Our seeing is no more acute, nor is our hearing sharpened by our physical loss. But dis ease draws your attention to mortality like a roughened place on a tooth that you cannot keep your tongue’s curiosity from worrying, like a song that will not leave your unconscious, like meanderings of sunbeams that cut through below zero temperatures reminding and remanding you to the presence of summers past and the summers yet to come.

The fact is that what is coming will come. Maybe Jesus will meet you, or maybe you are on the path to perfection in your next life. Maybe this is all there is. I don’t care about that so much. The fact is that we are granted this eye-blink of a life, and it is a question of living, and dying and living through. What is beyond this plane is beyond, but we are here, and there is a lot of living to do. It really does have to do with framing death with life instead of with questions that will clearly answer themselves when the time comes. Good living is in the knowledge that our near life responsibilities are framed by our dis eased near death experiences.

At least that is how it looks at 4:51 AM.