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.

July 4

July 4

It is July 4th, and in the last two weeks, maybe even in the last seven days, more than one friend has told me I seemed a little “dark.”

And I thought I was hiding it so well.

So I will admit that I have had thunderheads round my eyes, that I have felt less connection, less space, less. I admit that something I knew but couldn’t acknowledge was taking place. I admit that I just wasn’t moving through the harder times, the more challenging times, the situations that were clinging to me with all of the grasping, cloying, olfactory, primal qualities of old smoke in the morning – hard to get rid of once it is on you, yet pleasant in small amounts as memory or flavor. I did not see the same darkness as my friends, but I now realize that the last set of losses, the last paper cuts, have been particularly hard to take.

I always overestimate my readiness for such things.

If you know anything about the physiology of the brain, you know that there is a great deal of motor cortex real estate devoted to the thumb, and I suppose that is why I have been able to keep some thumb function up until this point. There’s just a lot more that needs to be taken down in order for ALS to have its way. But now, my left thumb shakes, and it chooses its own direction in defiance of my desires.  And on my right hand, while my thumb is still somewhat functional, fatigue sets in quickly, so it’s functionality cannot be trusted. Add to that, the fact that my left side is always a little bit ahead, specifically that my left hand keeps informing my right of its future, and you have a recipe for a living Caravaggio* whose loss is less violent, less sudden, but no less significant.

So now here is the reckoning – no arms and no legs, no feet and for all intents and purposes, no hands. In the meantime, my neck grows weaker and and my sleep is inconsistent. I won’t even go into the challenges of ALS logistics. Each small loss must be translated into these larger, taken for granted arenas that most adults plow their way through (except for flossing) without a thought in the world except, “do I look as good as I possibly can.” At night I look up at Ev and sigh, “Sometimes, it sucks to be me.”

I’ve told you many times, I am no saint.

And yet, I cannot help but perceive a certain sense of purpose at work in all of this. It is as if a confluence of universal ethers has come together in a very personal way to teach me another lesson and another and another. My history is one where I stepped up in my youth and learned the skills required to keep a family running, and then I pushed those skills out into my own life. I realize now that many of the failures that I perceive in my first 50 years, were really my inability to translate my need to care into anything but my needs. I didn’t really learn how to care with any modicum of success until about 10 years ago, when I came to understand that human fulfillment is in the ability to translate deep care for all those with whom we cross paths, but in a way that allows such care to be reciprocated.

Please don’t read into this anymore than what was going on in my mind and my heart as I moved through the life that I knew.

Imagine that you have mastered some impossible technique, some skill set, some knowledge base, some attitude to a point where it has become like a second skin. Imagine that you are still approaching the apex of your purpose, your raison d’être, your life wonder, your grand opus, your artistic fulfillment, imagine. And then the universe writes across the sky a secret message that only you can read, “Enough! It is time to learn the real purpose.” Your head would swivel, your thoughts would lose their direction and alignment, and you might even be afraid.

I am afraid.

When my friend and teacher Matt asked me how I was doing, “not physically, but otherwise,” he stated that I seemed to be projecting darker.  I don’t like to characterize mood as dark or light, black or white, or any other arbitrary, colorful categorization. But when he said this, I realized that my grief was more present, more surface, more perceivable. It has not helped to see friends with ALS fulfill their destiny, nor to see brave caregivers in their own grief, and let me be honest, in relief that such a journey does have an ending. If you chose to perseverate on this reality, it could push your soul out of your body. But when Matt made his observation, I also realized that that while deeply challenged, I still do not despair. I have not moved through the latest losses as easily as before, yet I still see myself moving through. While the great lift that comes in the rise of the breath and the flooding of the lungs with blessed spirit has been slower to arrive, I have not lost my faith.

The fact is that none of us is truly finished until the great lessons have been learned. I learned how to push care, even for those who didn’t want it, so that my life was defined in a single dimension. Dis ease has brought me the spherical lesson over and over and over again, that care for requires care of, that caregiving requires caretaking, that caring space is not only physical but deliciously, consciously spiritual. I have faith that I will move through and become even more the person I want to be, the person I need to be. I am not finished; life is not done with me yet.

Today is July fourth, the day that our still very young and fragile and maddeningly frustrating democracy celebrates its own birth. There will be speeches and fireworks and movies and concerts and all manner of patting ourselves on the back. I will not be swept away by the speeches or music (except for Copland’s A Lincoln Portrait), but I cannot help but see the direction we are headed with the hope that at some point, our immaturity will give way to that which holds true meaning – that faith and love have far more significance than avoiding pain and suffering and death. That the remarkably gargantuan resources that we plow into death avoidance could be repurposed into life embracing, refreshingly chilled water awakening us to our possibilities, such simple love that when given, only multiplies and grows. I see this in my sons and daughters-in-law and dear friends and most of all my one true love, Ev.

It isn’t dark at all, and it isn’t light. It is faith in what will be, and the love that will come, and it isn’t as bad as I thought.

*Michael Ondaatje’s thumbless thief in The English Patient.

Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

Two Stories and an Interlude

What does the first week in March, 2013 bring to the understanding of dis ease? This week, we had 9 inches of snow, the first snow days in the Twin Cities in years, and along with what some deem as typical March weather, I made significant changes in my caregiving plan that mark both a realism and a hopefulness about life. I can’t help but ask, as my hands weaken and my interpretations of modesty shift, “Is this the way it goes?” I can’t help but ask, “Is a typical March snowstorm a portent of the physical storm to come?” And I can’t help but conclude that in all things dis ease, everything is fixed and I can’t change it. But with such questions and conclusions swirling around me, it strikes me that there are two stories, seeking to make sense of all of this, and neither of them is adequate to the experience. This may start to sound preachy, and that is really not my intention. I just notice the stories much more clearly in the first week of March, 2013 with 9 inches of snow and the first snow days in the Twin Cities in years.

Two stories, one framed in Fear and the other in the Fantastic.

How does Fear frame our human story of dis ease? The Fear story says if you can accumulate enough, if you can live in the right places, go to the right schools, make enough money to buy the right things, gate your community, avoid “those” people, stay above the messiness of unwashed humanity, crush any dissent to the narrative – real or imagined, dis ease will never trouble your existence. It’s a story of enormous resource, poured into avoiding death, seeking a control you can never have, where Fear is nothing more than motivation, change isn’t necessary, and people who own a different history can be held at arms length with no consequence. This is a story that has birthed a Western, capitalist, materialism as the key plot-line to the narrative. It is seemingly and brutally honest and terrifyingly realistic, and it makes tremendous sense in a world that seems irrational and dangerous and less than truthful. In the Fear story, dis ability, dis ease, dis array are the punitive consequences of a life out of control, blaming those conditions on the person and not the circumstance.

Countering the Fear story is a story based in Fantasy. It’s a story that says if you just believe enough, if you can give enough to the right people, show up for school, not worry about money, forget the materialism, take no responsibility for control and require that all responsibility ultimately flows back to the system, then dis ease will never trouble your existence. It’s a story that says death comes to us all so don’t worry, no need for concern, change is inevitable, and difference is easy to manage. It is a story of eschatology, one that says live for today for who knows what tomorrow will bring, one that would have rich people give away all their possessions and poor people pour scented oil having spent the last pennies they had for the privilege of the sensuous experience. The Fantastical narrative rears its head from time to time in our history as a refutation of Western, capitalist materialism, and the key plot-line to the narrative is that something greater than us will always make sense of an irrational and dangerous and less than truthful world. It’s a story that explains the massive, unpredictable event as inevitable, so there is nothing you can do about it. It tells us that dis ability, dis ease, dis array are the inevitable consequences to a material life, so in the words of Bobbie McFerrin, “Don’t Worry, Be Happy.”

You probably think I am oversimplifying. Of course I’m oversimplifying. There’s no other way to make the point. After 9 inches of snow on a windy March day, oversimplification is the storyline of the day.

An interlude:

This week, the mainline news proclaimed an AIDS cure for a baby. The complexity of AIDS belies its simple and truthful origin. In the nineteen eighties this complexity made us think that there would never be a cure, a vaccine, adequate treatment, sufficient management of this remarkably complex disease. And yet, the mainline news proclaims a cure for a baby. And of course, those of us who live with the complexity of ALS ask, “If it can happen for AIDS, why not ALS?” And we know the answer.

The cure is material and fantastical.

Neither story – the Fearful or the Fantastical – is adequate or truthful or real. The Fearful story is a denial of what I know. I know I will die sooner than I wish. I know it isn’t the punitive consequence of a life out of control. And at the same time, the Fantasy offers no comfort. I know that I cannot believe dis ease away. I know I cannot be so out of control as to deny responsibility for the consequences to come. After 9 inches of snow on a windy March day I don’t have time for Fearful or Fantastic simplicity. Dis ease is overarching, and ALS is not its only servant. Fear and Fantasy, dis ease and disease are teachers with great requirements for honesty and reality.

What I really know is this:  The two stories are not mutually exclusive, even though each story rejects the other’s truth.  One denies the reality of cost, of economics, of means and ends, while the other disavows difference and chaos and control or lack thereof. In the end, whether fully embraced or totally denied, dis ease teaches a story that says Fear is an overrated motivation, and Fantasy is more than an eschatological gesture. Dis ease teaches a story that insists the frameworks of Fear and Fantasy require each other, for neither offers a narrative that is any good without the corrective the other provides, and that alone each is chaotic and dishonest and harmful.

Dis ease is a story that encompasses the Fearful and the Fantastical. Dis ease means there is no cure for AIDS; rather a working solution has been found for one child. We may learn to apply it for the 300,000 children afflicted by AIDS each year, but it will not be a quick fix. And I have to remember that no story of fear will cure ALS. No story of Fantasy will develop adequate treatments.

And one final addition to the story is this: I know there is not enough time for my story to end other than in fulfillment of the current narrative – a story where neither Fear nor Fantasy prevail, but love and work and gratefulness for the human engagement that makes the story – dis ease and all – what it is as it continues to grow toward Spring.