Dis Ease Yoga

Before ALS, I honestly believed that yoga was for my wife, not for a weightlifting, biking, swimming, semi-running 50 something-year-old male who knew he was going to live forever. I thought it was nice for the YMCA to offer yoga, even though I believed their main focus should be on weightlifting and crushing physical fitness. I suspect that many hold the same perceptions, believing as I once did, that yoga was for other people.

It took a diagnosis of ALS and an awakening to the phenomenon of dis ease for me to reconsider.

For many months I have held words and thoughts and symbols and sighs in my heart concerning my practice of yoga. For many, the idea that a person with ALS, unable to control any physical function, totally reliant on the good will and expertise of volunteers and loved ones, would state that he is practicing yoga might spawn incredulity. I might’ve seen it the same way two years ago. But the yoga story that I carry is one that has given me deep gifts, both tangible and intangible. And I want to share some of that gift today, not because I believe you should become a Yogi – a student of yoga yourself – but rather that in this particular experience is the complexity of human dis ease, what it means to have ALS, what it means to excavate your spirit until your ideas of success and failure, growth and regression, awareness and unconsiousness are turned on their ear.

Let me start with the physical act of yoga. I go twice a week, on Monday evenings with either Ev or my kids, and on Friday with good friends – yogis in their own right – who very generously donate their time and physical strength to support my practice. The classes are a part of Mind Body Solutions, a nonprofit founded by my teacher, Matt Sanford. Matt’s story is remarkable, but he tells stories that are even more so. His yoga practice awakened him to realizations that the body and the mind are inextricably linked, that injury and disability are circumstantial and not destiny. He teaches numerous practitioners and other teachers, and there is a remarkable group of instructors associated with MBS that are skilled and loving and every bit the teacher that he is, only in different ways. I cannot pay a higher compliment to the master teacher that Matt is than to hold up the teachers that he has awakened.

The Monday and Friday classes are decidedly different from one another. The class on Monday schools me in understanding the ways my new body works. There is great attention paid to the smallest detail in the spine, the diaphragm, the energy of breath as it flows from grounded space out through the limbs, head and heart. And while it may not look like we are accomplishing the poses, each of us – those with traumatic injury, cerebral palsy, MS, chronic pain and even me with ALS – finds our own way into the knowledge and practice our teachers present. To illustrate, the concentrated focus on spinal energy for a person with ALS, a person that one would assume has lost spinal awareness, reveals vast spaces for spiritual growth in spite of the physical loss. Monday nights challenge me, requiring faith like preparation before the practice.

The class on Friday is different, more about the pose, with the teachers purposefully seeking a meaningful way for our bodies to enter the yogic space. Friday is closer to traditional yoga classes, more about the broader practice than the details; and the benefits for the students, particularly those physically strengthened by the practice, are tangible. The students who so graciously allow me to join them on Friday are remarkable in their physical progress. Some show new capability, and in their joyful growth, I must remember that even though ALS robs me of the ability to gain strength from physical activity, my practice of a yogic routine has enormous emotional, spiritual benefit. And of course, there is definite physical benefit in moving a body confined by paralysis. Each class is different, neither better nor worse but complimentary one to the other.

After each class, I am exhausted yet more aligned in space than before I began, more alive to the spirit in the breath, more engaged with the beauty of human-to-human contact. I mark epiphanies exploding into my awareness or creeping quietly into the edges of consciousness. Each of these classes requires physical engagement, more than was ever required of me when I was able-bodied. The philosophy of MBS is to illuminate human understanding through the more readily discernible physical act while challenging us to find deep meaning in the discovery of this very transient and unique envelope of a body that each of us brings to the practice. And strangely, my soul is engaged. No wonder I am so tired at the end.

During any given class, at any given time, I can expect that the practice will remove my carefully constructed façade, layer by layer, piece by piece, until my dis ease is fully exposed.

The experience is more complex than anything I have ever encountered. On the one hand, it is not uncommon for me to focus on some small physical requirement, one that I could do even one week ago, and recognize that it is now impossible without the aid of another – and I grieve that loss in momentary gulps of realization and sorrow that passes through me like saltwater tears. I cannot help it, marking the losses week to week.  Often, as I observe the diminishing physical space I can meaningfully claim, circling down into my own constricted tangible essence, a thought will arise and I will question the attempt, asking questions of myself like, “Who do you think you are to even attempt such a thing? You have ALS. Why are you wasting these good people’s time?”

Then I remember what I have learned – yoga is not in the physical act. The pose is just an avenue to deeper insight, an expansion of breath against the restriction of some perceived elastic band around my torso, an opening of heart against fear of awareness. Awakening to such psychic, spiritual, emotional, faith-filled space holds at bay the panic hidden in the physical loss. It is as if I am on the circling gyre, simultaneously spiraling up and down in opposite directions – one spiritual, climbing into the rarefied awareness, and one physical, falling into deep velvet loss.

I do not know how long I will be able to continue. I hope until I die. Each week is an intertwining of grief and joy, and that seems to me correct.  ALS requires it, Dis ease insists upon it, so that in reality the practice for me each week two times is balancing tears and laughter, realization and unawareness, the spiral up and the spiral down, each week, two times, preparing to do yoga.

And I doubt if I will ever be svelte enough to dress in that specific yoga way.

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.

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Of course, I blubbered and cried and sobbed with joy for life so blessed that friends would sing for me.

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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.

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Psalm 39

Make me to know the measure of my days, O Maker of this mortal frame.
I would survey life’s brief and narrow space, and learn how frail I am.

Anthem paraphrase of Psalm 39, “Make me to know the measure of my days” by Shawn Kirchner

This past month has been a measure of many things, and the near future looks to be measured out with coping mechanisms every bit as exhausting as dis ease itself. If you have been reading between the lines of this quasi-documentary, you know that I really dread the SOP measurements associated with my dis ease. Although I hold deep respect and a dear love for the many professional caregivers in my life, each time I see them, the story is the same—what have you lost since the last time we saw you, and how can we measure it? Generally, the measurements are private, as in the patient questionnaires I answer, or the oxygen saturation measurements or the FVC measurements, or the measurements of my word speed, large muscle strength, swallowing, cognitive functions, or any other number of measures that do nothing but document the dance of loss fomented by cruel yet consistent ALS choreography. But this week started a different set of measures, not so private, not so easily camouflaged as I have managed in the past—public measures of my stamina, my driving, my communication, my public responsibilities layered one after another. Their success is expected and their failure a statement of loss greater than I can afford if I am to effect any modicum of success in this current life path that still holds so much meaning for me. Probably nothing brought this home more clearly than the driving assessment I took on Friday at the Courage Center.

The Courage Center is a remarkable place, set up with a mission that those with disability will live life to its fullest potential. How could I not feel safe in such a space, yet in a déjà vu moment, it was one of those experiences where the guy playing the part of passenger, fulfilled the role of the one in the driver’s seat, presciently walking me through driving’s future. Steve has been at the Courage Center for thirty-five years. He works intimately with any number of neurodegenerative dis eases including ALS, and he knows the implications of not being able to drive. So he set up a driving experience that was about two-and-a-half steps better than my current system, and put me through my paces to see if he could tire me, or distract me, or just plain find a reason for me not to drive. It was informative, and it allowed me to question capacity and capability as we talked about the cost of further modifications to a van that has already been heavily modified. Should I go to zero-resistance steering? Should I get assisted braking? Put the EZ Lock system in so I can drive easily from my wheelchair? And if I do these things, how long will I get before these modifications are not enough? What is the measure of my days of driving, and is it worth it? As Steve pointed out, “In this country, driving is your freedom.” No kidding! Measure for measure, I did fine in his carefully crafted testing of my capability, but to what end?

And if that isn’t enough measurement, then the coming weeks will brutally seek to publicly reveal the fatigue and weakness of ALS. Whereas up to this time, I have found little tricks for negotiating requirements and conserving energy for the next day and next and next, the coming three weeks have no downtime, no recovery, no space for blank stares at walls while my body slowly works up the energy to come back to meet the next big challenge. And the measurement of my performance in these numerous public arenas could raise the questions that I fear the most—“Is it time to hang it up? Is it realistic to rely on a dis eased person when his peers have left their work long before?” The measurement will be imprecise but brutally honest, and my own fear for my fortitude is realized in nightmares of publicly slipping up in a way that will inspire pity and quick leaps into stereotypical attitudes about dis ease and disability. Measure for measure, these are the cruelest ones I know.

And the measures keep coming. Dis ease’s cruelty arrived with a simple, anguished Caring Bridge post from one that I have never met but have come to know and love. She is young, so she aggressively pursues an active battle with a recurrent cancer that backs her into a corner where every possible move looks like checkmate. She has a beautiful husband and children, and she has dueled gamely with her dis ease for long enough so that from a purely logical perspective, hospice should be her right. She has met the 99.9th percentile, defied the mortality odds and squeezed every drop possible from her way too short life. I so admire her gumption and the gumption of her family as they clearly communicate that she is not ready to give up on this last gambit. And yet in the end, I detect fear and anger, and an unspoken realization (and possibly relief?) that the end game may be playing out. Cancer takes her measure, and she is just short of its insistent, unavoidable requirements.

You can guess that my true love sensed the anxiety and angst beneath the musings above. And even there, the measures just added up to loss. “Come and sing with me,” she said in an effort to pull me out of my Saturday pout. And Henri Duparc took the measure of my voice and said, “You have no business accepting any invitations to travel on this voyage.” I just couldn’t find the breath in it. Finally the questions came tumbling out in measures of music not performable, and they forced me to face questions of measure of my days.

How do you know when it is enough? When does the realization that it might be time, hit you? My experience of loved ones in hospice feels literally like one day we were outside the hospice, and the next day we were in, with nothing in between. In retrospect, I know that this isn’t true. The events that lead up to hospice were insistent and present, and hospice was not unlooked for. But the day, the hour, the minute the decision was made, seemed like it came out of nowhere with nothing but denial standing in the way. Is that how driving will be? When did the cane, the walker, the wheelchair, the bedrail, the grab bars, the van go from prudent choice to absolute necessity? What is the measure of what I have retained, and how long can I count on these capabilities? Sometimes it seems that we are so busy counting my losses, that we fail to realize the critical moment that embraces the numbers and defies them with aching, measured humanity.

I turn to Kirchner’s poetic Psalm 39 again:
See how the rushing race of mortals move as mere shadows o’er th’eternal plain.
They rage, strive, desire and love; but all their noise is vain.

As I realize the movement and measure of loss in each day, the vanity of the noise is crushing. And it takes every bit of energy I can muster to reach above this fog, to ask for healing when none can be found, causing me to ask, “How long, and how long?” If you have been reading between these lines of dis ease, you recognize the spiritual strength I receive from my sons, my wife, my friends and the work that I still deeply love. And in the end, there is the answer, measured out in dribs and drabs of energy and strength.

There are many musical settings of Psalm 39. Admittedly, the frailty, the human vanity, the realization that we are only here for a moment and then we are gone, speaks worlds to me, but just as music focuses measures of my mortality, so too does music illuminate a different meaning for the same. Johannes Brahms also set Psalm 39 in his German Requiem, only he continued past Kirchner’s sadness asking, “And now Lord, what do I wait for? My hope is in you.” I guess I can admit to measures of strength from an old German agnostic’s take on life’s frailty.

And in the breath of those measures, I can see my way through the immeasurable, as hard as it will be.