Beneficence

If you have traveled with me for any time at all during the last three years, you know that I consider myself to be blessed. I don’t use the term lightly, for I know that from the outside looking in, ALS does not look like a blessing, even with the most creative of interpretations. And I don’t mean to diminish the daily challenges of living with a body that is breaking down minute by minute, hour by hour, little by little, small to big to massive to the point where nothing functions and all things physical must come from the beneficence of another person. But if you have traveled with me for any time at all, you know my blessings, the growth and learning they have fostered, and you know their source.

And you know, the lessons have not come easily.

In the first week after my diagnosis, I felt that the only space available for pain was mine and mine alone. It seemed logical and protective, but as I began to share my new status, two realizations became clear. ALS would be a very lonely affair if my only source of of energy would of necessity, have to come from within. As I felt the physical fatigue of ALS growing, as my energy waned, as I felt the strength of a life defined by physical activity leaking into a universe of stillness, as weakness of body threatened to define personhood, it was easy to believe that this new reality might frame the parameters of my soul. I was frightened. Within the first week of my new life in ALS, I came to understand that as I shared my new normal, if there was no place in my heart for the pain and weakness of others, then my own space would become smaller and smaller – angry and frustrated and locked in. I learned as I told my story, others would tell theirs. ALS granted us permission to share disease of body and spirit in a space that was strength and energy and synergy, huge and wide and oxygenated in colors strong and bold, transcending the weak and angry pastels with which our diseases sought to paint us.

The realization hit me like a bag of bricks.

For many years, I taught leadership and ethics. What I tried to teach was that what often looked like vulnerability was actually great strength. I tried to teach that no one person could lead alone. I tried to teach that humans need each other, and this often means we have to reconcile the different meanings we ascribe to singular phenomena. I tried to teach how to pay attention, keen and analytical attention to the context of any situation. But I also tried to teach that context could imprison the imagination, leaving only stale and tried but untrue methods for dealing with the situation at hand. In many ways, ALS took what I tried to teach and infused it 100 times over.

In the infusion is transcendence – vulnerable, collective, reconciling, attentive.

Saturday, my 58th birthday, I was given the gift of attending a lecture by the Dalai Lama. I have never heard him live. The gift of being in the room with such kind energy, such humanity, such loving presence, such wisdom was a gift of such anticipation that I could hardly contain myself, and yet I was also haunted by a feeling, fear, almost anxiety. What if my body would not allow me to go? What if my hands would not drive the wheelchair, or the ride into Minneapolis would be too much, or the weather too cold, or the snow impassible for a person like me? I began to close down the anticipatory space into a fear of losing something that I had yet to even experience.

And here is the first lesson.

It takes a lot of energy for me to go anywhere, and left to my own devices, my own energy, my own abilities, I probably would not have gone. My family rallied around me, driving both the van and my chair, the six of us together and me feeling the love. My friend created a path of no resistance, placing me on the front row, making the lines to get in and security checks melt away. I was so glad to be there, and the Dalai Lama was wonderful and wise and considered and realistic; his answer to the question, “In one word, describe the world today,” stirred my heart, I so get it. “COMPLICATED!” he said with hardly a pause. He was invitational and imaginative in both experience and vision, and he asked us to raise our humanity to the very best that we can.

But there is more.

At the end of the question-and-answer, his Holiness was asked if he would bless us. In reply, he stated that as a Buddhist he was skeptical about blessings, for blessings come from individual action and motivation. It was a beautiful answer, underscoring the message that he had just delivered – peace and human love begin with the individual person, and while I think we were disappointed not to receive a blessing, his answer was a call to beneficence and sufficed for everyone in the room. And then, he did something extraordinary. Instead of walking off the stage to his right as he was supposed to do, he stepped with purpose and direction to his left, holding his hand up to shield his eyes from the stage lights, pointing in my general direction and looking as if he wanted to greet an old friend. And he came to the edge of the stage in front of me, and when I realized he was coming to greet me, I began to cry. One of the Tibetan musicians behind me gave my daughter-in-law a scarf and he took the scarf and held it to his forehead and then said, “Meanwhile, my blessing,” and he gave it to me. Namaste. I sobbed and my family sobbed in the beauty and the blessing, and in that moment it hit me, again like a bag of bricks, that a blessing does not stop in its bestowing.

I hope this does not sound pretentious.

I can hardly speak about the moment, even now, many days later, without crying. You see, in my tears and the tears of my family the blessing was reciprocated. We received his blessing, and as we cried together, we saw our place in the universe and blessed the humanity to which we had been invited. It was as if every lesson I have sought to teach, that ALS has sought to teach me was infused 100 times more. And his blessing was a message, that all blessing comes from intentional action, and cannot be conserved if it is to remain a blessing. To be a blessing it must be paid forward 100 and 100 and 100 times over, so that each blessing invites us to further realize the beauty and complexity and messiness of our sprawling humanity. My teaching is a miniscule peek, and ALS grants a fleeting glimpse to this lesson. Dis ease is the lesson lived. And unlooked for, yet transcendent, tears framed a moment where meaning continues to deepen in its own time and space toward a more loving humanity.

Blessings.

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That Which Does Not Kill Me

As expatriates living in Egypt, we walked a fine line between the laughable and the ludicrous, sometimes within seconds of each other, and often in the same situation. With so many possible stories from which to choose, I hope you will indulge me in using the local beer – Stella (not to be confused with the Belgian Budweiser) – to illustrate. Stella came in oversized bottles, green or brown, that had to be held up to the light in order to see whether “floaters,” usually some unfortunate cockroach seeking an early sample of the brew, were present. And more often than not, the carbonation had seeped out from an improperly installed bottlecap. Drinking Stella was at the very least a question waiting to be answered, and sometimes it became a great adventure, more than anyone should have just for the sake of drinking beer.

 Local entrepreneurs played upon the quality control of Stella beer. They developed specific fashion lines for the expatriate communities so that two extremely popular T-shirts sold in our ghetto environment were Stella – inspired: “Stella Beer – 10,000 Cockroaches Can’t Be Wrong!” and my favorite, “That Which Does Not Kill Us Makes Us Strong – Stella Beer.” Who am I to argue with burgeoning capitalism?

From my dis ease and ALS vantage point, “That which does not kill us makes us strong” garners a much different meaning than my interpretation of 25 years ago. As I look back at my old normal, the saying might actually be one of the primary stanchions on which I built a major part of my life. “That which does not kill us…” smacks of running at the speed of light right up to the edge of personal disaster, just to see how long you might totter before going over. A false implication of immortality exists in the saying. For many of us, “that which does not kill us,” actually becomes “nothing will kill me, and I will always be strong.” It only takes the kind ministrations of dis ease to contradict the immortality and blur the meaning.

If you know dis ease, then you know a confluence of negative events can be deadly. It can happen very quickly as in a horrible accident where one poor decision cascades into fatality. Or it can happen in slow motion; a floppy foot, a couple of falls, a lump, a hematoma, a diagnosis. It isn’t the speed of the event itself, it’s the confluence, and at some point no matter who you are or what the circumstance, it becomes too much to bear, overwhelming your humanity into a new existence marked by your certain demise. But our human existence is also marked by denial. Since the time of my diagnosis, well-meaning people have shared that “God only gives you what you can handle.” I usually thank them when they say it, for I know they mean to offer me comfort. But such a statement is one that obfuscates our human condition. Something out there will kill us.

This past week, I Skyped with a friend with whom I had not spoken for years. Our conversation, framed in connection and catch up, found us trying to explain in the space of an hour some of the most meaningful events in the time since we last saw each other with all of the success one might have teaching nuclear physics to a three-year-old. Both of us struggled to overcome language and context and emotion and time, bravely seeking to re-create connection. Each of us had a story to tell about our kids, and that story contained real fear – palpable, tangible, sweat streaked and tear stained and just distant enough to allow us to relate the stories in straight tones, yet present enough to still invoke the powerful fight or flight that only a parent experiences. I think that one of us even said, “That which does not kill us…” in an attempt to rationalize tough times in the lives of our kids and the fear we both carried.

We are both old enough to know life’s great lesson – it will always give you more than you can handle.

It isn’t difficult to apply what we both know to my present situation. I have never had a teacher like ALS – so demanding, so exacting, so focused on the outcome. ALS schools me to remain psychologically upright even as she lays me flat. ALS requires me to strategize independence, even as she diminishes my body, forcing me into dependency I neither seek nor want. ALS reveals gradual and sudden loss – pure, heart wrenching, gut scalding. It might seem her real lesson is, “That which does not kill us, actually will,” but I keep learning that one must not end with the obvious answer. The depth of my teacher is far greater than being simply overwhelmed.

We are taught to believe that we have control over things that we do not, that we are personally responsible for such control while life belies the fact. Paradoxically, we know our control is miniscule, dwarfed in its comparison to God the universe and everything, so it might seem our only choice is existential angst. Deeper learning seeks reconciliation, so that through the requirements and diminishment and loss, ALS whispers to me to have faith; the lessons are deeper than the losses, each loss is a teachable moment, an opportunity to grow until growth is no longer possible, a roadmap to the ultimate outcome, a faith in more than the fact of loss. ALS quiets the noise revealing human music and God singing in great statements, credos of faith that we are here in the moment with no influence on the past, and a future always unclear. And if we choose we can go it alone, or we can embrace our big messy human condition together in the struggle to understand a world that of necessity must always be just beyond our comprehension. The noise abates, and what is left is a teacher’s purity.

Open your heart. Breathe in faith. Embrace your humanness. Glimpse God. Sing.

We will always be given more than we can handle. We will always have the choice as to how we respond – collectively, singly, the great choral hallelujah, the quiet solo aria. There is space for both so that in the end when we must go gently alone, the gift becomes apparent if you have eyes to see or ears to hear or skin to sense. That which makes us strong is what we can shoulder in concert, in tryst with each other, blessed by the communion of saints and sinners with lusty voices trying to go it together until we are released into the magnificent universe to rejoin that which we cannot understand with one, great, hymnal, solo aspiration – a final ah.

I think you could drink to that, although if it is a Stella beer, you might want to check for floaters.

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.

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.

Vulnerability in b minor

This past week, I made the mistake of reaching too far, my hand stretching behind me for something beyond my grasp on the floor. In the process, my arm became stuck, lodged behind the arm of my wheelchair, my ability to lift it back blocked by the weakness of my upper body. I sat there for a few minutes feeling really stupid, my predicament slowly dawning on me, panic creeping as the realization that I was alone and there was no one to help me became more and more obvious. I’ve had this experience before, but mostly with my feet falling off of the footplates on my powerchair. That isn’t so bad, as I can tip forward enough to put my foot on the floor, even though I cannot lift it back onto the footplate any more. However, with my arm behind me, slightly twisted, a little painful and growing more so, a mantra of vulnerability began to speak itself, making itself known, rising out of my dis ease like an anthill in a cement crack, first scouting out the terrain and then exploding in lines fanning out in all directions and colonizing my thinking so I could not rationally figure out what I might do. And I will admit to you, I was frightened.

How routine dis ease can become until that moment when it is not, and therein lies vulnerability.

In an unremarkable month, the end of the season’s gray and grit with ashen skies rain or snow indecisive, when spring anticipation is clouded by winter’s harvest of friends and loved ones to death’s embrace; getting my arm caught behind me seems insignificant and small and minuscule. Yet such a tiny happening takes on power and importance beyond the event, and unbeknownst to me vulnerability lies in wait. Slowly, it burrows its way into my consciousness, secure without anxiety or concern that I might or might not traverse its paths, that I might or might not spiral into the traps it lays in this gritty, gray, ashen spring stubbornly clinging to its wintry womb so that the groans of its impending birth are only imagined pleasures. Patient, quiet, dangerous, vulnerability ambushes memories and susceptibility and grief, and I know its name with intimacy. And it knows mine.

Vulnerable. Adult.

I’ve heard the term “vulnerable adult” many times, mostly in the context of old people being conned out of their money or abused by caregivers or lacking the mental ability to defend themselves in any number of situations. And as much as I hate to admit it, I have always associated a certain amount of befuddlement with the label as if it was their fault. So the idea that such a moniker could be applied to me was so foreign, so alien, so out of my old normal perspective that even now its reality seems unbelievable, almost surreal. But this tiny event-a caught arm- interrupted my steady, unremarkable month; and the construct “vulnerable adult” emerged unfolding itself through  tendrils of consciousness blooming in the dragging of my feet, the leaden weight of my useless legs, tripping me up with little hints of air and sound, and calling my name in the same breath as its own.

Since ALS,it isn’t uncommon for old disability ideas to track me down and capture my imagination in themes laden with ignorance and negativity and fear and denial. With silent talons from above, they swoop in unforeseen, leaving me a little more stricken, a little more afraid, a little more frozen in disability myth until the sharpness sinks through my skin and lifts me from the terra firma of my able bodied arrogance, delivering a death blow to one more piece of immortal delusion.

Vulnerable is a term I never thought to apply to myself. It drips of a nonexistent control, of total dependency, of an old normal me rearing up and crying, “Not me, not me ever!” Vulnerable is a roadway littered more and more with dis ease as my capacity for its travel becomes less and less. My body will not be healed, and I cannot see the way home.

The old me would have strategized healing the vulnerability: Whip myself into shape so that no one, no way no how, would be able to see me as vulnerable. Intimidate the vulnerability, outwork others in the process so that they wouldn’t, couldn’t dare perceive any part of me as remotely, possibly vulnerable. But, even without dis ease, I was beginning to see the folly of these choices. After all, as a husband and father, musician, leader and teacher I had ample evidence of growth attained through hopeful and creative vulnerability. Yet, as is so often the case, even after my two plus years of ALS saga, I still return to the powerful grasp of a fearful old normal. And I still struggle to apply the gifts of dis ease in spite of my history.

Old habits die hard, and new spaces can be elusive. Vulnerability requires reframing.

Ten days ago, I had the great fortune of hearing the Bach B Minor Mass on the occasion of Bach’s 348th birthday. This particular work, the culmination of Bach’s choral writing, requires the commitment of a group like The National Lutheran Choir in order to pull it off with any kind of integrity. So, the privilege of hearing this piece in live performance was not lost on me. In order to prepare adequately I watched four hours of lecture by the renowned Bach scholar and conductor, Helmuth Rilling. While he is not the most scintillating of speakers, Rilling is a remarkable scholar, and his interpretations of Johann Sebastian Bach’s choral settings are both academically credible and musically imaginative. I had known how much Bach had borrowed from his previous works, but I was not aware of how conscious he was of going back to his best in order to move forward into what many scholars believe to be the halcyon composition of his career. And in this awareness, I realized the key to fully embracing my new found identity.

Like the B Minor Mass, ALS is my magnum opus. And like Bach, it makes sense to sample the best of my past in order to negotiate this certain yet uncertain future. I have enjoyed the fruits of vulnerability as ALS has progressed; friendships deepened, family love expanded, emotional – intellectual capacity developed. Without vulnerability, it would be impossible to perceive the subtle undercurrents of love’s music. Without vulnerability, the sweet breath of intimacy would lie fallow, row upon row of dust bowl dry plantings instead of fertile green growth. Without vulnerability, the beauty of the intellect, thoughts unimpeded by coarse understanding,would go undiscerned.

Without vulnerability, ALS would immediately kill me instead of escorting me home to eternity.

Matt Sanford reminds us that there are multiple stories of healing. Vulnerability is one such narrative, even when ants emerge through the concrete cracks. And I did eventually get my arm back in front, although there was no trumpet fanfare of seraphim, just a sigh of relief.

The Snake

This was one of those weeks where sadness lay just beneath the surface, like ice melted from a lake yet still lurking beneath dark waters where the sun and wind cannot reach, bobbing up from time to time and breaking free of the liquid above, and then sinking back just beneath to keep the waters cold and impassable. I was stalked by my feelings like ice–perceivable, tangible—testing my skills at holding grief for the past and fear of the future at bay. When I get this way, there is nothing to do but accept the sorrow, hunker down and know that anything has the potential to set me off. This is the way of dis ease. A couple of weeks ago, a dear friend asked me if I ever just have a bad day. She was a few weeks off her own surgery; her own recovery dis ease, and her question was urgent, like an itch just out of reach. I held her hand and said, “Yes, yes. Without a bad day, there are no good ones.” I should have told her about snakes.

I’ve never been particularly afraid of snakes. Growing up, I loved the garter snakes that lived around our newly minted housing development, and I loved more the stories my dad would tell about corn snakes in the barn of his youth. As a young science teacher, he taught inner city kids to catch black snakes and hognose snakes near the river that ran through our town. Nothing holds a seventh grade boy’s interest like a snake eating its meal—wise teaching on my dad’s part. When we lived in Egypt, we were aware of the deadly mambas out in the desert, although I never saw one. I did see a number of hooded cobras in Thailand, and the thrill of them was both tingling and breathtaking. We learned not to step on sticks in the dark as one could just as easily have been a cobra out to warm itself or worse, a green mamba, one of the deadliest snakes known to our world. As a boy, I returned again and again to Kipling’s The Jungle Book and Just So Stories with particular love for the stories featuring Kaa, the great 30-foot python and friend of the boy Mowgli. I assure you that my version was not the Disneyesque lisper–just scary enough but not too, titillating the little ones but not overwhelming them with fear. The Kaa I imagined was formidable, strong, deeply disciplined and powerfully loving. I loved Kaa’s mysticism, and I loved how Kaa could talk with the boy Mowgli in a way that his guardians, Baloo the bear and Bagheera the panther could not. Kaa spoke a truth to be considered or disregarded, and this is why I think on him now. Where the bear and the panther pushed Mowgli to become conscious of the fact that he was indeed a man, Kaa merely said, “It is difficult to shed one’s old skin.” Kaa, a great teacher, offered just enough information so that the man-cub’s curiosity was piqued, but not so much as to overwhelm him. Best to stoke the imagination and inquisitiveness and then let things happen, was Kaa’s method, and it was ultimately the best way.

Kaa tunes me into the teachings of snakes, and now the snake offers a conception of sanity in such a week as this when the realization of new lost skin cannot be denied any longer.

Here is the recitation, the litany—I told you long ago I would keep you up to date. Like a snake, lethargic and irritable, I now shed the last concept of me for a new one, defined by iterative losses that caress my psyche with angst and apprehension and pile up dis ease’s loving gifts. How does it love me? Let me count the ways. Standing for any time longer than a few seconds is an invitation to fall. My ability to transfer–to get up even if I am able to transfer, to get into bed without the help of another person, to get out of bed without assistance–all of this is now compromised beyond reclamation. I cannot reach out with my arms; they must stay in contact with my body or some support surface, seriously affecting how I eat or reach for something just out of hand’s range or place a folder in the out-basket or cut my food or shake hands. And my fingers, my tactile connection with words and writing and thoughts and emotions and the turn of a phrase and the joy of a scribe, no longer behave with any facility that resembles normal working hands and arms and brain. All of this has become in your face reality and not some unconscious abstract irritant. It requires grieving and quickly, redefining such basics as humility and modesty and sufficiency.

I relate to the shedding of skin in so many ways. Snakes become irritable, lethargic, losing their appetite and lying with milky eyes as their bodies seek to throw off the old and bring on the new. It takes a lot of energy to shed the old skin, with the final act a physical scraping and twisting as the snake rubs and scratches against sticks and rocks that will aid the metamorphosis. In spite of their physical discomfort, it is the way of snakes to shed so that a new skin can emerge. And ironically for some reason, with the week that has been, this concept of shedding for growth comforts me. Just as shedding is the way of growth for the snake, my growth in physical loss is the way of dis ease.

Dis ease sheds capacity, and while that shedding seems far too easy, it is what frames each evolving iteration of loss that I now experience. Since my first physical symptom, I have come to realize that from time to time, I must completely reboot, shedding the old concepts of what it means to have ALS like the old skin they have become, and embrace the new losses as progress, usually with some physical struggle and emotional upheaval thrown in. ALS has changed me. Dis ease has depleted me. I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me for that is not the way of life we are granted.

Friday night, Ev and I settled in on the movie Extremely Loud and Incredibly Close, and shedding’s reality came home to roost. While I found the characters extremely compelling, and I stuck it out in spite of the fact that I don’t do sad movies very well any more, my reaction was just another indication of how I have changed since ALS came into my life. I can think of all kinds of indications—there is passion underneath dis ease, there is overwhelming joy, there is sadness—all translated into one of the few physical acts I can still accomplish; holding myself together. And the fact remains that wet tracks, hot and acidy, inspired by the events in a made up story just real enough to believe, furrows hidden by practice, but always there to the practiced eye, appeared on my face–where the tears have been, where tears continue, where tears will be.

But in the watching came another realization. There is a line in The Jungle Book, “We be of one blood, thou and I,” the universal greeting that when spoken, ties the speaker to those with whom she speaks. Dis ease is a universal greeting as well, and it opens the doors that we all share in this earthly existence—death and birth frame our lives. Thus, I can be dis eased and alive, accepting what will happen in its own time, paying just enough attention to stay ahead, but not so much as to overwhelm, and in the end, moving beyond the paltry lengths of temporary ability into the skin of one who must continue to grow. It is the way of the snake and the way of dis ease, and it continues to tell me that I must meet loss with growth, all at the same time, until I can no longer meet it.

And maybe then, I’ll just shed my skin and leave it far behind for another to find.

The Swirl of It All

You might have noticed that there are some words I often come back to for descriptive purposes.  For example, I talk about fatigue instead of tiredness and meltdown over the adult version of temper tantrum. I try to avoid being overly political or cynical, not controversial but challenging; usually commenting on things that through the eyes of dis ease, seem very different from the temporarily able bodied perceptions I used to hold as if they were permanent.  This is deliberate as old familiar feelings, thoughts, intuitions, perceptions passed through always present ALS, take on the quality of almost-epiphanies, significant realizations calling for extra attention.  When I need to work something out, when no moniker of enlightenment magically appears, I know that there is nothing to be done except write, examine the inadequacy of written words and rework the writing over and over until it yields meaning.  I often describe this state as being in a “swirl.”  Usually associated with the layered blending of frozen yoghurt, I find the word highly useful in describing thoughts that have no peace.  Swirl is its own dis ease—as if you are carrying something quite significant, but the only way you can find to describe it is mired in something trivial, incendiary, naïve, incoherent, inadequate, mute when words are needed, and over-spoken when a quiet center would be more useful.

For me, swirl often happens at the confluence of several significant events.  This past week, the combination of a visit of friends from Norway that made me much more conscious of the trial of a mass murderer, Supreme Court decisions on healthcare and immigration, and ramped up coverage of Minnesota’s so-called marriage amendment created such a confluence.  Each of these public events inspired its own swirl, with the majority of the discussion reflecting a less than thoughtful, easily predictable direction.  In fact, the way that these issues were presented was designed to appeal to specific frames of reference—that combination of culture and experience that creates scaffolds of knowledge from which we judge all experiences, all situations, all others.  While it may be impossible to experience anything other than the coverage we experienced last week, I feel something else is really going on.  It could be argued that these three highly charged issues are being used to sort us into uneasy conscious columns of culture, although I cannot help but feel that the manner of presentation is much more about a broader spectacle of dis ease. 

The trial of a man that killed 77 humans has raised a number of public, fundamental questions about justice and just proceedings, the role of the press, whether a civilized society should have the death penalty or life sentence, and especially about the responsibility of all these institutions to the families and friends and memories of the victims.  And of course, the so called debate on universal health care was not definitively answered by John Roberts and the Supreme Court.  That decision has inspired Shakespearean heights of “sound and fury, signifying nothing.”  I have Facebook open right now, noting the “political” postings of my “friends” and I can only observe the lack of critique for anything that vibrates in harmony with personal beliefs, and the over the top diminution and outright vitriol that is reserved for those who differ.  Add in the advertisements that have started appearing in the State of Minnesota both supporting and decrying the “No Gay Marriage” Amendment that has made its way onto our November ballot, and it will be hard to get a word in edgewise. 

Talk about the dis ease we carry.

I am not going to discuss the rightness or wrongness of people’s positions vis-a-vis these issues; that is not the point here.  Rather, these examples illustrate a swirling of the human collective, and it is troubling.  I have come to realize that as my own physical abilities to connect with other humans are waning daily, the ability to recognize another person’s humanity, to connect in some way that is meaningful, to engage in that which fosters growth rather than diminishment, has become more and more important to me.  How, if our humanity is the connective tissue that binds us, can we be so divided by the events that shape us? 

This is not just a philosophical question; my life quality is specifically influenced by the value of the human engagement that I am granted.

The issue is not one of recognition.  We homo sapiens don’t seem to have any trouble recognizing other humans.  But our immediate recognition is so overladen with other stuff, that human appreciation flies out the window. To paraphrase Shakespeare again, “methinks we do protest too much.”  I am overwhelmed by the dis ease of our collective humanity in these exchanges, even as I also feel my own urge to participate in the same, as if it would ease the ache I carry in my heart, or the anger in my gut.  And to what end would such participation lead me?  Do my brothers and sisters find solace, release, joy, peace in their own participation?  When I project myself into such doings, I perceive nothing but emptiness, vacuous self-congratulations with no substance, hurt and fear and manipulation and the wholesale destruction of others.  Whole industries are predicated on as much.  Whole cultures echo this noise.

What’s the alternative?

Today, I attended a funeral.  Since it was in another state, it was streamed on the internet.  Oh how I longed to physically reach out to this lovely collective rallying for the family of a beautiful young mother and pastor to their community, even as they grieved her loss.  Her life flamed like a solar flare, only visible to a certain, dis eased hemisphere.  Somehow, I came into the sphere of her influence, and today I ached with electronically mediated fingers to grasp the beauty of living where she inspired human truths of love and living and dying and laughter and grief.  But in this swirl of sorrow, came an epiphany.  This whirlwind of death and grief, lit by this beautiful soul alive to the ages to come, only dead in physical body, pointed to another way.  In a small voice that pierced my own dis ease, here came the revelation.

Humans are capable of fearless love for each other.  The funeral of a person whose Caring Bridge site was called “My Cup Runneth Over” in spite of the fact that it was possible to see her cup poured out on the ground by the ravages of cancer, pointed to the incredible human capacity we have for connections that build each other, that face the fear of living with dignity and encourage a centeredness where dis ease is only a consideration, not a rule.  It was an acknowledgement of the value of a life lived fully, conjoined with the grief of a life lived way too short.  But the capacity of the human soul is such that we can honor and live with such contradiction, if we dare.

I realize now that my swirl this week was not so much the noise of murderers and fear mongers.  It was the contrast of living until you die, with dying as you live.  And living until you die is only possible if fear and emptiness are replaced with growth and love and fostering a center where spirit shines past death and into lives and lives and lives.

I’ll take that with nuts on top.