Arcs and Vectors

I’ve been pretty quiet about an upcoming event, but I think I can now announce that my son and daughter-in-law are expecting their first child, Ev’s and my first grandchild in August. As you can imagine, we are really excited, and every once in a while I catch Ev tapping her toes looking forward to “getting my hands on that baby.” We anticipate birth with such excitement, superimposing hopeful fantasies and imagined perfection on these tiny humans yet to be born. At the same time, we call into question our own childhoods, exploring our parents and their parents, seeking understanding and wisdom before the experience. I can’t help but be comforted by the fact that as I wind down my time in this space, a new human being poised for birth finds his own way, perfect in possibility, not yet shaped into the joys and sorrows of life as we know them. Long explored by poets and philosophers and scientists and clergy, one cannot help but marvel at the contrast – beginning and ending, alpha and omega, birth and death, baby and grandfather yet to be.

Life is up and down.

A new baby and a man with dis ease are at different points on the same trajectory. A baby, like a sunrise reveals the hope of a new day, dew on the grass, birdsong, buds opening into new life. While she must acquire every single behavior associated with a fully functioning human – speaking, bathing, toileting, feeding, dressing, schooling – for just a brief moment between birth and breath there is nothing but pure potential. And over time, she will learn to make responsible decisions leading to the  independence in living that we so value as a culture. Our new grandchild, still in utero, is now nothing but a hopeful point, barely perceptible on the life arc that we all experience.

On the other hand, my trajectory is at the end of its curve, an Apollonian finale hissing into the ocean’s bubbling cauldron of the life that was. All of those human basics, pounded into me in a lifetime celebrating independence, indicative of adulthood’s responsibilities, are shedding like so many feathered layers, melted from the wax wing bindings of life’s earlier flight. Where our grandchild will acquire the intellectual and physical capacities necessary to independent life, I now lose these very same capabilities. While I still take responsibility over my own body, I can only do so through the help of others.

The arc, birth to life to death, is a story of acquisition and loss.

We accept the lack of ability in an infant, hoping and expecting that capacities will develop and capabilities will be achieved. It is far more difficult with our elders. In conversations with people my age, “Mom just doesn’t feel like mom anymore,” has become a mantra. If you think about it, the idea that “mom” would remain evermore the “mom” of memory is illogical. There is not a person on earth who has the same capabilities today as they had yesterday. We age, and our physical capacity wanes, trickling out in dribs and drabs of lost elasticity and flexibility and strength and eyesight and hearing, or worse our mental faculties fail us until we feel our youth as some distant fantasy of another person beyond our memory. The dependent needs of a baby are framed in hope while the dependent needs of mom and dad foment despair, yet the expectation that our moms and dads would be like they were when we were young is just as strong as our expectation that a baby will grow up.

The arced trajectory is a story of upward mobility and precipitous fall. Its narrative is one where youth is celebrated, envied, and ironically disposed of in adult expectations that are unattainable and unreasonable. In our culture we superimpose the avoidance of dependency at all costs on to the expectation. Thus, when our lives reach their independent apex, old age looms as a tragedy to be avoided and put off. We are born, we live and if we are so fated, we age until we die.

In anticipating the birth of our first grandchild, in anticipating my own death, suddenly I am hyper-aware that independence from others, this most desirable state, implicitly means that independence gained must never be lost. It is an illogical belief, fraught with mythos and irrational assumption. Our bodies are designed to gain capacity and then, in what Steve Jobs once called “… the single best invention of Life, … [death] clears out the old to make way for the new.” Our minds are designed for greater and greater analysis and efficiency at the cost of less and less plasticity. Our souls are designed to cling to this physical existence as if our very lives depended on it, and they do. In anticipating the birth of our first grandchild, the grand design, the arc of life, the trajectory of birth to death, soaring to its apex and tumbling freefall into death, provides me little comfort.

A number of years ago, I was preparing to do Brahms’ A German Requiem with my small but mighty church choir. Since it was for church and the German would be problematic to teach, I was working with all manner of translation software and biblical renderings to try to truly understand the biblical texts that Brahms had selected, rendering them into a more meaningful English translation than the Victorian English provided in the score. In the second movement, the chorus begins with the line, “Denn alles fleisch es ist wie Gras.” I have always translated this line as “then all flesh is like the grass,” but one of the translation engines I was using at the time came up with the following: “we are like meat.” I had to laugh, partly because of how far this translation was from the original text, and partly because of its accuracy in capturing the human condition.

Having just heard a lovely performance of A German Requiem last weekend (auf Deutsch), I am reminded with a smile of both the sentiment and the ultimate reality. Rather than a trajectory that implies upward hope and downward despair with all of the crazy energy we put into denying the fall, the birth of a first grandchild causes me to think of life as a vector, pointing up and forward, acquiring all manner of joy and sorrow until, weighted down by life’s cumulative experience, our only chance to break free is to shed our fear and sadness, our hurt and tragedy, our triumph and success, the very things we strove for with such energy, with such purpose, until we are only love and empathy and pure collective humanity. In the arc, we flourish and we fade away, and the gymnastics we perform to maintain the charade of physical independence will ultimately fail. But the vector is a story of comfort, for there is great hope that babies bring and great truth that aging teaches, leaving us pure spiritual connection within ourselves, with others, and with God, even into death.

No wonder we cannot wait to get our hands on those babies.

Susan, Dudley, and Eric

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence that we believe defines who we are. It reminds me in some ways of journalist and fellow Person with ALS (PALS), Dudley Clendenin.

You might remember Clendenin. Diagnosed with a particularly aggressive and virulent form of ALS, he wrote “The Good Short Life,” a column first published in the New York Times detailing how in the face of “Lou” he would seize his own death. While not revealing the manner by which he would kill himself, he was very clear about his need to take responsibility for the act. He expressed the same independence that I cannot help but read in Susan Spencer – Wendel’s book.

Spencer – Wendel has decided to kill herself also, albeit in her own way. She does this through a year of “living joyfully,” rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.

I need you to understand that I have no problem with a person with ALS exercising as much control over their own lives as possible, even if it means hastening their own demise. Until you face ALS and own it as your own personal dis ease, I don’t see how you can judge such words and actions. Until you face ALS, agreement or disagreement is purely speculative. And therein is a seed of understanding why I have had such difficulty and anger in writing about a fellow PALS.

When Dudley Clendenin wrote about his decision to off himself, it was because he did not want to become a “conscious but motionless, mute, withered, incontinent mummy of my former self.” Aside from the fact that incontinence is not usually a side effect of ALS, Clendenin only expressed the fear that all of us with ALS secretly or not so secretly carry – that somehow we will become “locked – in,” trapped in our bodies with no way out. At that time, the columnist David Brooks seized this imagery as a shining example of how those of us who are in a permanent state of incurable illness, should realistically address our responsibility toward lowering the cost of healthcare.

Like Clendenin, Spencer – Wendel also expresses such fear, and like David Brooks, mainline journalists respond from their own able-bodied frameworks. In an Amazon.com interview with Cokie Roberts, Spencer – Wendel is asked, “Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer…” She answers:

The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is that there is nothing behind the door…I am not giving up. I am accepting…Also a major factor is my husband. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife.

Scott Simon of National Public Radio, in his Weekend Edition interview with Spencer – Wendel declares, “This book is so funny,” immediately after asking Spencer – Wendel’s husband how he is doing, receiving the following answer:

“Well – difficult. Every day I wake up, I feel sad. That’s my first emotion. And then I roll over, and I look at Susan. And I realize that she’s not allowing herself to feel that way, so I can’t – and I don’t.”

Hilarious, right?

I think my greatest disappointment is in the not so subtle ratification that a life framed in disability is so easily judged to be less then living. From an able-bodied perspective, the storyline reinforces a Temporary Able Bodied myth long on issuing a hall pass for terminal living – no responsibilities, no problem – and short on looking at the consequences of such easy assumptions. It reinforces singular focus on the person with dis ease and conveniently disregards the family, friends and colleagues also affected. It reinforces the idea that life with massive disability is life not worth living, unhappy and unfulfilling, meaningless and unengaged. As Ev says, “Spencer – Wendel and Dudley Clendenin are journalists, and by virtue of that fact anything that they publish becomes authoritative.”

They do not speak for me.

I know another story of blessings and complexity and empathy. In 2009, Eric Lowen of the folk rock duo Lowen and Navarro, participated in a New York Times perspective called “The Voices of ALS.” Listen to his words.

The hardest part for me is the pain I bring everybody. The fact that my children have to deal with it and my wife, I wish I could disappear quietly. But it doesn’t work like that. That’s the most horrible for me.

He continues:

I thought at first I was going to live every day to the fullest and not let anything stand in the way, but then I got a hangnail, then I got a stomach ache…life is pretty much the same no matter what and the thing that has helped me the most is a quote from a friend of mine. She said, “We’re all on a journey. You just have a better map.” I think that’s the way it is.

I so get this it makes me hurt.

What seems to get lost in able-bodied frameworks is the message that life goes on, that ALS can be a life sentence, not just a death sentence. And while we cannot all be poets, Eric Lowen sang ALS in such a profound way until he could not perform any more, engaging in new life even as ALS slowly eroded the old life that was his. He wrote:

And it’s beautiful how new blessings unfold in ways I could never have known,

but I’ve still got some time on my hands,

I’ve had to run, I’ve had to crawl, been rich as a king and had nothing at all,

still raisin’ hell and tearing down walls, I know where I stand, I’m learning to fall.

– Lowen and Navarro, Learning to Fall

There is a postscript to all of this. Dudley Clendenin, a man who could not see himself living with ALS, prolonged his life, even agreeing to a feeding tube. Why? I cannot be completely sure, but he was offered a book contract to tell his remarkable story. The book contract offered him the opportunity for re-engagement with humanity on terms he was able to quasi-define. He died in May of 2012 with his boots on, having sent the galleys of his new book to his publisher.

And that is the real point. We can either die while we are dying or live to the fullest. But massive disability is not the determinant. It’s learning how to fall into new blessings.

You can watch a video of “Learning to Fall” here.

Circling Back

I’m working on three writing projects – the revision of a book with my friend Ernestine, a paper with my friend Sharon, and of course this blog as the spirit moves me. All three of these projects require consideration of my history in dis ease, trolling through earlier blog postings, journals, and even pictures as I’ve considered the past 2 1/2 years. It has not been easy. Sitting inside any former blog entry is grief for some hidden reference, some thing I was able to do then but cannot do now. Inside every picture is an image of me old normal, even when I thought it was new normal. Inside the book revision is grief for the teaching I can no longer do.  Dis ease has taught me that looking to the past brings grief, and that has been my experience, exponentially multiplied as I circled back into the writing, the imagery, the progression, the old me.

Let me give you an example.

A little over two years ago, I blogged about a specific meltdown over clothing. In an entry called “The Fixer,” I described packing for a business trip to Arizona, and of course waiting until the last minute to discover what I already knew–the summer clothing that fit a svelte warm weather old me body was about as relevant to my new ALS corpus as a bicycle for a fish. Frustrated, angry, humiliated, totally off center, you would have thought the issue was a squandered chance at world peace rather than clothing that wouldn’t fit. But the issue was not so much the clothing. Rather it was the inability to bring my old normal skill set of fixing things to bear on my clothing challenges. In essence, I had to face the new normal where fixing didn’t work.

Imagine what it was like to reread this entry. At the time, I was walking, I traveled alone, I could get on a plane, I could go to Arizona, I could drag a 22 inch suitcase behind me, I was still relatively mobile in spite of the fatigue of ALS. As I plumbed the past’s depths, the realization of both my blindness and my prescience washed over me in giant waves of incredulity. I was blind to just how far this thing was going to go, and yet I was clearly anticipating the losses, one by one, paper cut by paper cut, old normal into new normal. You can probably imagine the grief as I read about this person bemoaning his condition, even though he could walk and travel and work and you can probably imagine the grief as I compared what he could do then to what I can do now.

Pictures are even worse.

We are putting together a bike team to raise money for ALS TDI, an ALS research group with a four-star Charity Navigator rating. My son Jon is building the website and innocently, he asked me for some biking pictures. Nothing I can think of ambushes me more than looking at pictures of Ev and me on a bike ride. It calls up all of the joy and fun and closeness of two people outdoors putting in the miles and letting life fall off onto the road. And I don’t want to seem idealistic about the memory. There were times when we were both so tired, headwind strong, hills steep, sun hot or rain pelting that we just wanted to quit. But we learned to get through those times with a lot of encouragement, “You can do this, get on my wheel and we’ll do it together.” My memories are about an equal partnership, overcoming physical and spiritual challenges. Flipping through pictures of both of us so fit, so physical, so happy in the privilege of riding together is an invitation to despair at what dis ease is doing.

Circling back is not for the faint of heart.

One more example is worthwhile. Early on as my physical capability waned, I explored my newly acquired disability in a blog I called “The Look.” I discussed the new experience of being ignored, looked through, unseen. Again I am struck by the incredulity with which I wrote. I couldn’t believe I had been so blind until disability was central to my own existence. I couldn’t believe that other people were so blind as well. I couldn’t believe the regret for my old normal knowledge that I carried in my new normal self. I reread “The Look” with quasi-embarrassment for now the topic seems so much more complicated than it did then.

Circling back is complex. It is hard to look at images from the past, frozen in their time, stripped of their context and feeling, and not judge them too harshly with the sharpened understanding of focused hindsight. I was doing the best I could at the time. You would do the same.

I now recognize that circling back is not really what I have been doing. Instead I have been spiraling down, deepening the experience so that what was once “the look” is now vulnerability, what was once “the fixer” purveying easy one time solutions, must now be “the worker” recognizing the irresponsibility of such acts.  And in the ultimate spiral, I now flip through images of the effects of dis ease on my family and friends and especially my one true love Ev, and my fears were both well founded and inadequate in anticipation of what was to come.

When we are in the moment, it is easy to believe that we own a full understanding of the situation at hand. What I’ve come to realize is that as I move further and further into the experience of ALS, as my family and friends have their own interpretations and perceptions and epiphanies of these experiences, as physical loss and spiritual gain strive for stasis and balance with each other, I am in a spiral of increasing awareness. What was then the complete package, is now incomplete, requiring further analysis, further negotiation and most importantly the humility to recognize the obvious.

I’m never going to fully get it.

We spend an inordinate amount of time trying to make sense of past failures and successes, attempting to control their effect on the future as if such control was attainable.  In circling back, I spiraled down into the person I was, recently diagnosed–still walking and fearing the wheelchair, still breathing and fearing BiPAP, still speaking and fearing eye gaze technology. I am comforted by the futility of such focus. Circling back is walking the very thin line of interpretation and realization, celebration and regret, hope and fear and angst and worry and joy and centeredness.  Spiraling down is all in, outside the lines, embracing the contradiction of knowledge and ignorance in a miasma of fixing and working and looking and vulnerability and imagery old and new.

And it offers much deeper meaning than bicycling with a fish.

 

 

 

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.

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.

Looking Good

Even in this time of social media, in this time of Facebook and Twitter, in this time when people will post the most personal of information, even in a time when people blog about their own terminal dis eased journeys, most of us still need to keep private spaces and public faces. It only makes sense to withhold some vulnerabilities behind a public face, masking the turmoil beneath the façade, holding back, demonstrating the wisdom of personal protection and smart boundaries. After all, if we did not maintain a sense of face, then answering the question, “What is wrong?” would colonize our waking hours, even in this most socialized of media times.

My old normal self, when professional considerations dictated the logic of private spaces and public faces, invested enormous energy into the look, the feel, the armored uniform of façade. Now, it would take so much more energy than is mine, just to construct the mask, let alone maintain it for any length of time. The old normal is just not available to me. And yet I still find myself attempting a public face that hides what is going on underneath the surface, in spite of the energy required.

Old habits die hard.

My private-space, public-face condition is especially called out when I meet people I haven’t seen for a while. As they greet me, they invariably will make the observation, “You look good!” Focusing on some superficiality, an article of clothing or my glasses or the color in my face or the smile that belies the dis ease, they are seemingly and genuinely surprised, leading me to think that they believe ALS should ravage its corporeal host in a more horrifyingly obvious way (I cannot imagine). For those that I see on a regular basis, who note the subtle changes as they happen, such interchange is rare, but for those who have not seen me for a while, who perhaps are following my journey through these writings or through news from family or friends, the likelihood is to privately note the losses and publicly proclaim the “good look,” even though the loss is obvious. It is only too human to hiccup some nicety about looking good.

I really can’t blame them. I would do the same, and I have.

I suppose if I was pale and sallow, if I had lost copious amounts of weight or gained full on bloating due to chemo or radiation treatments, if my hair was falling out, if my skin stretched skeletally across my bones, then the ravages of dis ease would be more apparent. But ALS isn’t like that. It moves insidiously and for me, just slowly enough that I can “look good” for a little while, although a little while seems like all I’ve got.

I’m not sure how to respond to “You look good!” Usually, I thank the person and try to think of a way to move the conversation away from my appearance. It is as if they perceive the energy I can no longer muster, a cipher of my former days, a tome to appearance even though God knows I’m already self-conscious enough. Over the past two years I have lost most of my arm and leg muscles, a lot of my back muscles, my abdominal muscles. I am reborn in outward appearance – big belly, skinny arms, skinny legs, weak neck and heavy head atop the whole package. Or perhaps a different way to characterize this new appearance would be that my belly is Buddha-like, although I cannot claim the same inner peace for my life outlook.

I have ALS.

There are variations on the public call out of face. We humans cannot help ourselves. We probe with questions like, “How’s it going,” or “How ya doin’?” not expecting any answer of substance. But for me, such inquiries are fraught with danger. I parry and dodge, usually with good nature and glib honesty, “Oh, I have ALS. But other than that I’m doing great.” There is truth in that answer, but it isn’t comfortable. Neither the question nor the answer lend themselves to the easy repartee that a couple of able-bodied human beings with no terminal illness on their conscious horizon, laughing and joking with one another, would enjoy. The longer I wait to answer, the more uncomfortable the space becomes. Most of us don’t reply to “How’s it going” with complete truth. But the honesty in the answer I have constructed, as glib as it might be, is about the best I can do, and I have to admit that at this point honesty means much more to me than emotional comfort.

I suppose you could accept a biblical interpretation: “Ask and ye shall receive.”

Inherent in questions of state of being are questions of identity. Matt Sanford writes, “What is identity in the face of a radical disruption? Who was I? Who am I? Who will I be? Truthful answers to these questions often take years and years to realize.” There is no question that ALS is the “radical disruption” in my life, and I am often brought up short with the consideration of the real question at hand. “What makes life so sweetly worth the living, something worth the good look, when death in all its ALS forms sits so clearly on your shoulder?” The implication is clear–any outward manifestation of life is inappropriate in the face of terminal dis ease. And in spite of myself I have to admit that it is a fair question. My life has become a search for anything and everything that might balance the knockout punch of ALS. It’s “radical disruption” must be radically disrupted so that a good day is defined as one where the necessity and presence of ALS are balanced by the light of family and friends and music and love.

“You look good!” “How’s it going?” “How ya doin’?”

The human condition is a delicate dance where good and bad, joy and sorrow, sickness and health, dis ease and comfort are neither mutually exclusive nor fully integrated. We are everything and all things, and we are nothing. To say that ALS has taught me to dance might seem disingenuous to some, even ironic in its bold statement of fact. After all, I no longer walk, how can I dance? But the dance dis ease bestows is one that all humans must experience in order for life to be fully grasped in its overall messiness and complexity, its delicious chaos. It is the gift of humanness and free will. It is the gift that takes the focus off of avoiding death, and instead presents a choice – either wither away in the horror or seize the gifts that life and dis ease bestow. It is a balance between the heavily tolling march of dis ease and the balletic leap of living joy.

I don’t look good. My muscles atrophy and my strength wanes. Yet each day my heart is is full through friendship and love and warmth, radically disrupting the radical disruptions of the good looks of ALS. Looking good isn’t about the face or space.

It is the disruptive blessing beyond the look.

Elegy

When Ev and I were 26 we moved beyond United States boundaries to Norway. We had with us our 14-month-old son David (Jon would be born three years later in that oh so special country), a thirst for new adventures and the fire in our bellies to become great educators, the teachers we wanted to be. And within a week, we had met so many others like ourselves, green and young and excited, as well as a few people old enough to be our parents, but still excited nonetheless.  And we knew we had made the right decision. Within two weeks, we began to recognize the wisdom and life experience in some of those our parents’ age, and we realized that all the young teacher energy, all of the young teacher synergy, could not hold a candle to the force that was one of those couples, John and Ruth.

I’m not sure what it was exactly, but I think our respective families would say that we fell into each others’ lives at just the right time. Always respectful, always mindful and full of enthusiasm, John and Ruth became to us the parents and grandparents we ached for so far away, and likewise we became the children and grandchildren close by, when their own children were equally distant as our families. If that were the end of it, it would have been a beautiful narrative, a time together defined by circumstance and geography and travel and adventure. But there was something else between us, something that allowed us to turn each other free from living in a place we all had come to love, to living in new places that we knew we could share in some endeavor greater than what we had known before.

You see, in our story, we were meant to find John and Ruth, to interweave our lives with theirs off and on but always keeping track.   Each of them brought something special to any situation shared. John loved a good story, good food and good company. Ruth brought an eye for the beautiful, an ear for that which was the most lovely in human interaction, and most of all a sensibility that every moment would be a special moment if we just paid attention. I could speak of each of them for hours, but at this time I need to focus on Ruth, beautiful and sensitive and grounded Ruth.

There are so many things that I could say about Ruth. I know that for every story I would tell, sons and daughters and friends and neighbors and acquaintances and first timers would nod knowingly, eyes lighting with the joy of being in her presence, inspired to share other stories a hundred and a hundred times over. I will share two, knowing that there are thousands.

When we lived in Egypt, John and Ruth  visited us at our home. I have never seen any one person wring so much out of one week in one place as Ruth in Cairo. One of our friends had concocted a 24 hour Sinai tour that he would give for the not so faint of heart, and he and Ev decided to take John and Ruth out on this grueling, no sleep circuit. It began at St. Catherine’s monastery at the base of Mount Sinai. One would awaken to be on the paths by 2:30 AM so that the sunrise could be experienced from the top of the mountain. On their way back down, Ruth was stopped by a man from Japan who asked her politely her age. When she told him she was 66, he just shook his head as if to say, “how could I ever possibly keep up with someone so fit?” What he didn’t know was that two hours later Ruth and John would be snorkeling in the Red Sea and then taking time out in the desert looking at rock formations. And as we all know, Ruth’s hiking only got better with age.

A second story is a little more personal. When Ev and I were in our third year in Norway, Ev miscarried. We were devastated. In came the community led by Ruth, not so much to make it right or to offer any kind of silly observations like, “God must’ve really wanted that baby,” but instead just to offer company and attention and a meal and assurance that while we were disappointed and sad, it would get better.  I know there are much more special stories about Ruth – stories of invitations into homes of people she had just met, stories of friendships maintained over years and years and years in Libya, stories of parties and gatherings that were so right that one could only marvel at the woman who had thought through the remarkable detail of these social occasions, and most of all, stories of a woman in love with the Middle East. But the Ruth I know is the Ruth who understands the joy of being, that sometimes being is all we’ve got, and that is a powerful story.

I suppose that there is nothing I could relate that would add to this beautiful story of Ruth except that she taught me how to keep a sense of wonder, to be brave in times where self-consciousness ruled, to value the beauty in the individual human no matter who he or she was. Ruth encouraged me to be grounded, feet firmly planted in my history both good and bad. Ruth cheered me to soar with wings opened to the sun and wind and rain of life’s wellspring. Ruth could laugh in a way that lifted my heart, and two sentences later cry tears tinged with the joy of  life fully lived. And she freely gave the knowledge of just how one does that — so that I learned to laugh in a way that lifted my own heart and to cry tears that told me that life lived in wonder and awe was my privilege.

After I was diagnosed with ALS, John and Ruth were two of the first people we called. I loved how matter of fact they were, how easy they were to talk with, how they focused on a healing future, how they wrapped their prayers around Ev and me. After our first visit at Mayo in which my diagnosis was confirmed, we scooted over to La Crosse to see them. And there was Ruth with a special meal, a place of warmth, healing for the unhealable, with laughter in the face of fear, and with tears that soothed confusion in reassurance that love is greater than all things.

And this is the most important thing that Ruth’s life teaches me. She was and is and always will be the greatest reassurance, that love stands when all else falls, that love is present when presence is remote, that love is the best way, the only way to reach out beyond the confusion of what it means to be human, that love is the holiness humans are granted in proof of God.

When Ev and I were 26, and we moved to Norway in search of the great adventure, we never believed that the great adventure would be eternal love shared, but that was our discovery.  And for us Ruth will always be that eternal love.

What Does Success Look Like?

On Monday evenings, my son and daughter-in-law take me to adaptive yoga at the Courage Center. It is a remarkable experience; you have never seen so many challenged bodies in power wheelchairs guided in yoga by such thoughtful teachers. The founder of this adaptive yoga is a man by the name of Matt Sanford. I will not relate here his life and calling; he tells his own story far more profoundly than I possibly could. A masterful teacher, Matt’s story is unapologetically human.

Matt teaches from his wheelchair, asking from us a practice of yoga that is thoughtful and demanding.  He stops and corrects and questions and observes, skillfully engaging each of us individually.  Matt freely admits little experience with ALS, so it should have been no surprise that he  asked me, “What does success in yoga look like?” I was in the middle of modified sun salutations, my son and daughter-in-law on each side of me raising my arms and helping me to drop down while lifting my chest, drawing in a centering breath. My eyes were closed as I sought memory of the motions required, forgetting that there was something of equal importance outside. I stopped. I thought. And I answered, “I guess just being, here, in this place is success enough for me.”  It wasn’t quite what I meant, but it was the best I could do at the time.

Silence, then, “I guess I wasn’t expecting an answer quite on that level.”

I’m not sure what he meant, but I know the experience of asking a question and receiving an answer from a different place.  He asked the question two more times that night, each time causing me some internal turmoil.  After all, ALS and success are not often tied together, but the struggle was instructive and in many ways symbolic of a week that was.

Last week, I experienced one of the highest highs and one of the most humbling lows since my diagnosis. And somehow, the consideration of success coming out of my yoga course, in the presence of a teacher who I do not yet know excepting his authenticity, seems meet and right and totally appropriate. Last week, many members of my former church choir showed up to surprise me with a gift of song. Last week I ended up in the emergency room; my non cooperative body further refusing to cooperate.

How wonderful it is to be surprised by song from people you love.  A lifetime ago, we spent such meaningful time together—they put up with my jokes, my cajoling, my coercing, sometimes my overbearing personality, and still found a way to make beautiful music. They gifted me by singing three pieces sung together so many years ago, and it was absolutely divine. They sang so well, incorporating small but significant interpretations that we had arrived at together, echoes of music that still resound within my deepest meditative soul, polishing the sheen and shine on these three choral jewels that were and remain expressions of the beauty and possibility humanity can glimpse through the artistic endeavor.

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

And there was more to it than the singing, for I had not seen so many of them in years. What a commentary on the pathways of life this was. All of us had been lost and found in life’s ever-divergent paths – children and history and marriage and divorce and new careers and no careers and sickness and health and emotional upheaval and moving on. I wish I would have had the strength to insist they stay the hours until the evening had ticked away one delicious second upon another, but my beloved Ev had forewarned them that my stamina is compromised. And so they lined up and one by one took my hand and talked a little and reminisced a lot and cried in unison and harmony and love and affection, a sacred polyphony of friendship built upon the beauty that making music together spawns.

To see them all, to hear them all, to breathe them in as one would inhale spring after a gentle rain and a drying sun, lifted my heart for just a moment into a place that I know still exists, even though I do not perceive my presence amid those lofty arches anymore.  Thank you Judith and Andy, thank you all – my beautiful beautiful singer friends.

But balance mandates new lows, offsetting such a soaring high.

One of the afflictions for anyone who spends the majority of their time in a wheelchair is plumbing mishaps. The details are not important, except that two nights after the beauty of my choral gift, Ev delivered me to the emergency room of a local hospital, hoping to address the pain and dysfunction of a body that refused to operate normally. By the time I reached the hospital I was physically exhausted and emotionally drained. And over the next several days, the fear of going back and the recovery needed from the physical manhandling that must take place in an emergency room situation was my reality, my raison d’être, my conscious being.

What do you think success looks like now?

By the end of my yoga class the question arose two more times. I was tempted to stay in my ALS space clumsily describing physical progression, cautiously retreating from any activity that might result in pain or damage. The space was safe and the advice was prudent, not profound. But deep learning does not take place in comfort. With one phrase, my teacher opened vistas of possibility that my body might occupy even as physical capacity wanes. With one phrase, my teacher reminded me of the balance and the center when we accept the unity of body and mind and spirit and life. With one phrase, inner and outer, horizontal and vertical, down and up, reflection and narrative opened up the holy possibilities before me.

“You existed before this,” he said.

At the very end of the class that was far more physical than I ever thought possible, at the very end of the week that had left me soaring in the emotional stratosphere and groveling in the ditch of human existence, at the very end of a day that had left me so tired that I was searching for every excuse not to attend my class, I think I glimpsed what success looks like.

In my life, there will be ALS, not to be fought, but rather embraced. Now ALS is me and I am him. He will require all manner of experience that feeds my soul, balances his presence, and moves me on into the next challenge. In so many ways, life with ALS bears remarkable similarity to my life before. It is always about balance, and balance is only achieved on the sharp end of the needle threading its way in and out of the cloth of the task at hand, and binding new threads to old fabric.

Friends sing, and bodies break, and courage is centered in existence before this.

Diminish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4:51

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

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

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

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

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

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

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

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

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

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

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

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