Maundy Thursday, From the Silence

I was privileged to offer the following last Sunday.

Claire and Matt sit in a small office in the neurological wing at Clinic. The clinician has come to get me, just finishing up my own quarterly clinic visit, to ask if I would consider meeting them. I am so fatigued, but as she tells me that Matt is in his last weeks with ALS, that they read my blog, find my words helpful, and would like to meet, the only human choice is yes. I roll in, my daughter-in-law driving my chair, the clinician at my side. We immediately feel the desperate, resigned love, five people shaped by ALS in this moment together. Matt speaks through an iPad application, ” I’m doing as well as I can.” Claire sits slightly behind him, her hands on his shoulders willing him not to slip away just yet. She holds it together through some superhuman effort, telling us that she had to take Matt to the hospital and with a Do Not Intubate order, hospital staff were afraid they couldn’t bring him around. A chaplain had been summoned to pray over him and for some reason, when the chaplain touched Matt’s hand his eyes opened, he sat up and immediately started breathing again. Her tears belie her attempt at humor, “I have to find that chaplain to thank him, but I want him there the next time.” The next time looms over all of us in the room. “I am just not ready to let him go. Our kids are young, and when we went to the hospital, the oldest asked if his daddy was going to die tonight? I am just not ready.”

ALS crams a lot of story into short, breathless nights, minutes and hours and days and weeks of passion story.

Today is Palm/Passion Sunday. We Methodists tend to cram a lot of story into this day, partly because we don’t like to dwell too much on how dark the week feels, partly because we are so busy with lives that seem beyond the pale of such a story. If we could, we would probably compress the passion story even more, something along the lines of a tweet:

Jesus – triumph,Temple, Passover; Gethsemane – prayer, despair, arrest, denial; Pilate, Herod, trial; Golgotha –cross,cry, acceptance, death.

We Methodists cram a lot of story into this one Sunday.

In spite of its darkness, I have always loved holy week. It is the complete package, a story where each of us can find some element to which we can relate. Each of us knows what it means to succeed, perhaps even triumph. Each of us knows how passing such success can be, like turning a corner into sunlight only to become aware of the next storm on the horizon. Many of us have learned that success is nothing more than the question, “What have you done for me lately?” Indeed in my old life, no success was ever good enough because I knew that waiting just beyond the triumph, if I did not immediately move to address it, was possible and imminent disaster. Who among us has never felt betrayed or denied by friends or lovers, those we thought we could count on the most? Who among us has not perceived, even just a little bit, the lie that we are in control? Who among us has never felt so alone that we are sure even God has turned away. This is the stuff of life, blistering our emotional overlay into thick yet well-worn calluses of experience. Each of us knows how it feels to be helpless in the face of events. Each of us can point to some event where we feel like we have been figuratively, if not literally, crucified.

 

And each of us can understand viscerally, primally, the question, “Why have you forsaken me?”

You see how human the story is, this holy week? Jesus in the garden asking God to take the cup away. And here is something I believe. If he has become the human the Scriptures tell us, then he would not have said, “I will drink if this is your will.” Humans don’t start with acceptance, with “If it be thy will.” We have to hear the nothing voice on the edges of a cold wind, wrestle with God’s silence, balance in ever increasing despair and frustration between anger and sadness at the lack of perceived response. Jesus was alone in his loneliness, facing his own mortality, his own dis ease, just as we are alone in our loneliness facing our own dis ease, our own crucifixions. Christ’s loneliness screams betrayal and denial and anticipated pain. His loneliness breathes total despair. In his loneliness is his overwhelming humanity, longing to hear his father answer, entreating his father to break his heartbreaking silence. The cup of mortality will not be taken from Jesus, for now he is one of us, and mortality is our human gift.

“Will no one stay awake with me?”

When I was first diagnosed, I composed my own variations on the theme of “Take this cup from me.” The more I learned about what was coming, the more frightened and angry I became. What disease could possibly steal more completely the life that I loved, than ALS? To be stripped so naked of all the things I enjoyed – to hug, to sing, to kiss, to eat, to ride, to speak, to travel, to breathe – the cruelty was beyond my comprehension, and I could see a future where every loss would be another opportunity for anger and fear, slashing livid red streaks across my vision and into the very core of my being. No one could understand this, no one. And I would be alone. I cried aloud to God and I swear to you God did not answer.

I was so afraid.

3 1/2 years ago and dis ease has brought me to the precipice: Will I live into the life I have been given, or die in anger, frustration, grief? I don’t hear any answers from God, at least not at first. But then something happens. The answers appear, not as I saw them but in their own guise; first in a trickle of  prayers and ” I love you’s” and quiet solace as I begin to tell people, “I have ALS, we have ALS.” Then the torrent opens.

My brother tells me I can lick this, I can fight it. I want to argue, but then I realize this isn’t about me, it is about him. ALS has opened him to examining his own life, how he would react, what seems true to him – my disease and his mortality molded into deep reflection.

I don’t argue with him, I listen and open a little bit.

A healer calls me and says, “you are angry, hurt by your body. You must forgive yourself, forgive your body, it is only doing what it is meant to do. If you do not forgive yourself…” She leaves the thought unfinished, allowing my imagination, my creativity to build around it.

I don’t argue with her, I listen and open a little bit more.

I have to tell my colleagues, the college that I lead, to admit my mortality and vulnerability and weakness and fatigue, I have invited them to believe that no burden would ever be too much for me, that I am strong enough to carry any load required. I must now lose that narrative and admit my humanity, and I am scared for I know that sharks circle at the smell of blood. I write them a letter. I tell them I love working on their behalf, being their Dean, that I want to continue until I cannot. And then I write the vulnerability – “… If I cannot do the job, I will step down.” Like cascades of water pouring out on a desiccated soul, they respond – notes and office stop ins and meetings in the hall – love and support that could not have been written better into a Hollywood movie script.

Their love opens me even more.

I have to tell the choir – a group for which I still carry twinges of regret, even a little guilt, for stepping away from them in order to become dean of the college. Dan Johnson brings Evelyn and me into the room, and we tell our new story, and the choir listens, quiet, respectful, eyes on us and looking away. And then they stand and surround us and cry and touch and pray over us so that the only thing we can feel is love, pure love. A year later on an Easter Sunday, in a “Hallelujah Chorus” that I can no longer climb the steps to sing, they will leave the choir loft and surround us again, lifting our voices with their strength.

What wondrous love is this…

Six weeks ago, I attended a lecture with his holiness the Dalai Lama. At the end of the question-and-answer period, he was asked to bless the over 3300 people in attendance. His answer was that he was skeptical about blessing, that blessing comes through our own individual action and motivation. It was a beautiful answer; through our actions we perpetuate blessing on and on and on, rather than waiting for blessing to happen. When the program ended, he suddenly turned toward me, walked across the stage to me, held a scarf hastily given to him up to his forehead and said, “Meanwhile, my blessing…” And he handed me the scarf. For a week I struggled in confusion as people asked me, “What was it like to be blessed by the Dalai Lama?” I tried to describe it, but I knew my frame of reference was wrong. And then it dawned on me. It wasn’t about a singular blessing, him to me. It was a charge for intentional action. It was another awakening to open even more to the love that is all around us. Not, “meanwhile my blessing.” Finished and done, but “Meanwhile, my blessing…” Unfinished, a  statement to me, to us to embrace love, for love’s action and motivation and intent can and must be lived into, breathed into until you cannot breathe any longer.

The opposite of love is not hate; it is fear.

The greatest challenge of dis ease is that the moment fear overwhelms you, the moment you are dragged into your own soul wrenching vulnerability, is precisely the moment to open yourself to love. It is fear that causes us to feel estranged and alone, apart from God and from each other. To be closed off from love is crushing, angry loneliness, whether intentional or not. To be closed is to think that God only speaks with a voice – words and sentences and phrases and paragraphs. To be closed is to be sick with the reality that impending death presents.

To be open is to embrace your own great big messy humanity, to cry in sadness but not despair, to recognize presence in the emptiness of the bitter moment of truth, to be afraid but not fearful. Dis ease presents the choice of being open or closed , and opening to her lessons, her gifts, her challenges, is not easy. But dis ease clarifies vision, bringing sight to the blindness of what you thought you knew about living, light to the darkness of cynicism that life’s grief piled upon itself can foster. I know ALS is a horror, yet when fully embraced, it has taught me, it has revealed to me pure unsullied, uncontaminated, unbelievable love.

In my heart of hearts, I know that love never dies.

We sit together in a small room in the neurological wing at Clinic. What can anyone possibly say in such a holy moment? Matt’s eyes implore me to tell what I know. I hear myself, words from another place, wrestled from Angels in long and winding dialogues between sleep and wakefulness, “You will never be alone Claire, for Matt’s love will survive this physical shell of the body. You know this is true. Close your eyes and think of how much he loves you and how much you love him. That love will always be with you. Your children will know him for his love and his bravery and his courage. And they will know his love through you. There will be sadness, at first overwhelming, but as all of you move together with that love that you have known, that sadness will become beautiful, a source of strength, a place that you can visit and be made whole again.” We cry, Claire and Matt and the clinician and me and my daughter in law. We cry together at this most holy and human and loving moment, and out of our blessed silence I begin to understand the acceptance.

“God, into your hands I commend my spirit.”

 

Falling 3.0

A couple of years ago, I wrote about the psychological and physical effects of falling. At the time, I had fallen a number of times due to leg weakness. Indeed, it was falling that convinced me, pre-ALS, to see a neurologist. Back then, I related how falling made me feel afraid, timid, less confident in my body. Over time, I mitigated the effects of falling by moving to more and more supportive and purpose built medical equipment including the power wheelchair in which I now spend the majority of my days. And I also sought to psychologically change the meaning of falling by associating it with the adventure of skydiving – the experience of falling out of a perfectly good airplane on two separate occasions.

Of the two effects, the physical are pretty straightforward. There are scrapes, cuts, bruises, and depending on the circumstances, broken bones. Luckily, my experience with falling has always been limited to the lesser physical effects. I have never broken anything, my pride notwithstanding, and anything that was physically affected required only a short amount of time before I felt it whole again. The interesting part of the physical is that for a few days or even weeks, it is there to remind you of just what can happen when you fall, the touch upon a forgotten place, the breath that stops at sharp pain, the scab present in the mirror and not even felt. The physical effects take place and if they are not too serious, begin to fade. That is not the case with the psychological effects.

I have always found the psychological to be more profound. After any fall, there is a psychological chaos that goes on both inside your head and your body. Breath feels shaky. Confidence has been disrupted, and presence is compromised. The mind is dulled by the experience, leaving one grasping for words and feeling at odds with one’s assumptions about the physical world, how things work, your relationship to the broader environment at large. For me the psychological bruising is a phenomenon from which it is far more difficult to recover than the physical. Given all of this, I thought I had taken enough control of my environment to put falling into the category of been there, done that.

Imagine my surprise, my shock, to experience the most significant fall I have yet to experience this past week.

Power wheelchairs are very technical machines. From time to time, it is important to change the settings, update the structures, and adjust the mechanicals. This can take anywhere from an hour to four hours or longer. My favorite wheelchair guy is Scott, a man who understands what it means to be in a wheelchair himself, having used one for the past 33 years. He knows a lot of tricks, how to avoid sores, and ways to make the wheelchair more comfortable. What I really like about him is when he is stumped, he turns to his very knowledgeable colleagues and they all put their heads together and come up with a solution. He is really quite remarkable, for he of all people knows that the space for people in wheelchairs between getting to where they want to go and disaster can easily be mere millimeters.

After my last visit to Mayo, we determined that I needed to get my chair adjusted, and I made an appointment with Scott with the understanding that it was going to be longer than usual. Wheelchair adjustment is highly individualized – what works for one person might result in pain for another. It is much more of an art than a science or technical skill, and the amount of trial and error required for this particular appointment kept me there for four hours. I was pretty blitzed by the end, but feeling confident that we had made the right changes I felt ready to take on the world again from the purview of my chair. A little after 5 o’clock Scott and I rolled to the front door of the darkened building, and he said goodbye. I rolled out the door, turned right, headed for the van and without meaning to, got too close to a curb.

To use a hackneyed cliché, what happened next was like a slow-motion movie to which I already knew the ending.

I knew I was in trouble when the wheelchair started to rock. I tried to kill the power to it immediately, but I couldn’t make the switch work. I saw myself rock right, then left, then farther right and completely over, my 190 kg wheelchair landing on top of me, pinning my elbow behind me and pushing my head and face into the pavement. Luckily I was wearing a neck brace, or I might have broken my neck. Unluckily, I was wearing a neck brace which pushed into my neck and chest so that each breath seemed slightly smaller.

It was a confluence of errors. Ev tried to stop me, an impossibility. Her phone was out of juice, and I wasn’t carrying mine. The wheelchair place was closed with no lights on. And its location is an industrial park where very little traffic is likely to pass after 5 o’clock in the afternoon. I remember thinking, “So this is how it will end…,” my breathing continuing to slow. Ev was pounding on the door and screaming at the top of her lungs for somebody to help. I was weakly calling, “Ev, just come and sit with me.” Miraculously, someone heard her, and after being down between 10 and 15 minutes, suddenly there were people all around me who had been working late.

I am so thankful.

Luckily, these folks know how to work with a power wheelchair. Between them, they were able to right me and get the chair back on its wheels. One of them used the attendant control and took me into the building to warm up. Another called 911. All were comforting and kind and very concerned. My first ambulance ride, and just to assure you that I am only bruised and scraped, the ambulance didn’t even turn on its lights or siren. After an exam at the hospital, my kids and Ev brought me home.

And here I am.

I have no words of wisdom this week except to say that even at what seemed like to me the very end, my body still mattered. When I could feel consciousness slipping, I remained present in my body, physically aware in spite of the psychological shock. I could discuss with you the philosophical failings of Cartesian mind-body duality at this point, but I am just a bit too tired, and still very sore, bruised, and shaken up. Even Ev is bruised from the ordeal, a goose egg on the arm and a big hematoma on the leg. We can talk about it another time, for my awareness of just how fleeting life can be, how narrow the tight rope on which those of us with disability roll, how lucky and unlucky the contiguity of variables leading up to and following any event, is hyper sensitized into a weirdly balanced consciousness. My lack of words is a failing of language, not of learning. I learned plenty in this particular fall.

Needless to say, I am just happy to have a little more time for discussion.Ev and I are not finished just yet.

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.

Time Traveler 2.0

This weekend, Ev and I watched the movie About Time. The plot is built around the idea that men in a certain family can travel back in time to fix things that they may have bollixed up the first time round. This premise is used to good advantage for the sake of comedy and poignancy, offering humor, a few tears, and mostly enjoyment. It isn’t the greatest movie I have ever seen, but we had fun watching it. And there was another reason that I enjoyed the movie besides fun with Ev. You see, I am intimately acquainted with time travel, for time travel is one of the great gifts given by dis ease.

It is a gift not to be taken lightly.

Imagine my surprise in the first year of my rebirth in ALS to discover that I could travel through time. Up until the very moment of my diagnosis, I’d always thought that time travel was impossible, that time was sequential and had to be experienced minute to minute, hour to hour, day to day. Einstein notwithstanding, it was my deeply held, almost sacred belief that once you have left, you can never go back, an entire life built on the idea that going back was impossible. And then came my diagnosis, and I realized that at some point not only could I go back, but that I would.

Since that time, I have spent a great number of hours traveling in time. You might call it remembering, but it is more intense than memory. Here is how it works. I close my eyes, think of something that brings me back to the desired time – a smell or sight, a sound or feeling for example – and then with a flutter of breath and eyes turned inward toward the space between wakefulness and twilight, I am back, reliving the desired experience as if it was happening for the first time. Only this time, because I know what is coming, I am able to pay better attention to things I might have missed. For example, in the births of my two sons, I had missed vital details, small but significant. When David was born, it was summer, with the sun streaming through the window of the hospital room, tendrils of comfort and grace in spite of our exhaustion and Ev’s pain. When I travel to that moment, I feel sunlight’s warmth on my back as Ev dozes in and out of worried sleep. We were so inexperienced, but I reassure her, I know how it ends and everything will be wonderful. When Jon was born, we walked up and down our Stavanger, Norway street, oblivious to the cold and Christmas day’s weak sunlight. I drink in the moment that as a contraction squeezes through my Ev, she puts her hands just so around my neck waiting for the pain to pass. There is nothing like the flutter and strength of her hand, and her eye catches mine with mutual strength and reassurance. I love revisiting the days our sons were born. The anticipation is delicious, the potential unfathomable, and their births are a joyful energy released into the universe over and over again.

You cannot tell me that this is not time travel.

There are significant consequences if you do not travel in time. Suppose you are duped into thinking that you can never go back, then you believe that life should be constructed with no regrets, no sorrow for what you might have done, no question about the direction you have taken. The psyche is constructed to learn and grow from mistakes, and if you see no future application of past regret, then you deny the regrets that have made you. You state to others that your life is exactly as it should be, and that all past experiences were necessary for the life that is. You wave a flag that says you regret nothing. You repress any sorrow for what you might have done but didn’t. You feel an overwhelming need to believe that you cannot go back, because if you acknowledge that you could, then regret and sorrow and questioning could not be so easily disposed.

I know this firsthand.

For such a long time in my life, before my rebirth in ALS, I tried to hold a “No regrets” philosophy for living. As seductive as the lie of curing disease, no regrets is a lie of arrogance and limitation. Since my rebirth, I have taken untold opportunities to time travel, to go back, sometimes just to experience it all again, and other times to seek what I might have done, what I should have done, what I wished I would’ve done. This has resulted in a sense of the present not defined by day or date or time, but by place – the grounding of my life energy beyond my feet and into the earth, above my head and into the heavens. Of course, I cannot time travel to what I have not yet experienced. I know that I cannot look into the future except to experience its implications from my past.

I have been granted the grace of regret and growth.

My greatest regret since my diagnosis was the diagnosis event itself. I allowed a situation to take place that was harmful to the people I love the most. It took me three years to figure out the post traumatic stress of this event, but I did, and once I did I knew I had to go back. This would be a different type of time travel, one that existed in the present and not in the energy between wakefulness and twilight. It would require every ounce of leadership skill, educative energy, and dis ease learning that I could muster. It would require that I go back with no expectations of the neurologist who rendered my diagnosis, and total expectation of myself who received.

So I made an appointment and met with the neurologist.

I met with him to make the case in every way I knew for a more humane, a more sensitive, a more holy and human act than what I had experienced. I met with him to say what I regretted not saying, that how one reads the script might be more important than the script. I met with him to help him see that great privilege granted in a life-changing moment requires far more creativity and imagination than is available in a strict yet blind reading of a perceived protocol. I met with him, and the result was predictable – he was defensive, and I pressed the advantages of ALS. Yet in the end, I hope that by meeting with him, he will hear my voice the next time and the next that the holy experience of diagnosis is presented. And I know that by meeting with him, I am better now.

The circle for me has been closed, and time travel even in the present has realized its potential.

Clearly I am not a movie critic, but I recommend About Time, especially if you can watch it with someone whose company you enjoy. I am not sure if I’m qualified as a life critic except I know that three years of ALS reveal challenges and gifts totally unlooked for. Time travel can heal regret and sorrow and questions of purpose or decision. It will not cure you of the first time wounds, but it will offer you healing the next time around, even if the first time was really bollixed up. You might experience one of the most blessed and graced periods of your life. You might learn to time travel even in the present.

And if you are really lucky, you can stroll a street, feel sunlight, and know unfathomable energy released into the universe over and over and over again.

From the Silence

Why has it been so difficult to write in the past month? I can think of all kinds of reasons, none of which seems particularly credible. Perhaps it is three separate infections, nothing much on their own but one after the other, creating iterations and variations on a theme of exhaustion through conditions that are hard to shake. Perhaps it is the deep freeze of late January and early February in Minnesota, when on the day when the temperature reaches the teens, good Minnesotans shed their clothes down to shirtsleeves and enjoy the balmy weather even though it is colder than sin. Or perhaps it is a new phase in the inexorable march of dis ease, a new beginning as I wind down to the inevitable. Illness, winter, dis ease, one is not mutually exclusive of the other, but the energy that each requires compared to the energy that I possess puts me in the deficit.

I am almost always at least a little bit tired.

This is new territory, a new geography where writing seems noisy, and I feel quiet, where two or three hours of napping on top of a good night of sleep is normal, where I am happy to just sit and think, to doze and listen to music wending its way in and out of consciousness. It is a space where the definition of living remains constant, but the meaning shifts and mewls – horizontal to vertical, cries to calls, life to laughter. It isn’t that I am not awake, alive to possibility. Rather, projecting outward seems less and less relevant, and aligning energy, above and behind, head and heart, body and soul, is a far better use of life force. And even though I occupy new space, there is still a consistency that I recognize as self.

I still love, I still feel, I still desire, I still recognize possibility.

ALS has its own gravity, strong enough that being in its orbit yields the realization that each repeated circle is always just a bit smaller, a hair closer to its sun, a flick of the wrist of the master fisherman reeling me in until I am caught and netted. That ALS affords any orbit at all is a marvel, for its main effects are an exaggeration of the laws of physics that keep all of us firmly grounded on the earth. As I spiral down, my perception is blurred so that I cannot tell whether the weight I feel is due to its mass, so vast that light does not escape its pull and so hot that purification by its fire is all one can expect from the encounter. With the completion of each orbit, my existence becomes more and more about being, less and less about doing, and the silence of the space roars its presence.

In this space, verbal expression seems so inadequate, words less meaningful. I find myself turning to music just to name the feelings, the experiences, the Godhead of my dis ease. More harmonic than tonal, more fundamental than overtone, more rhythmic than steady beat, it is music that defines the emotion – E major sunshine and brightness, steady and assured F fundamental, B-flat minor a sadness that hangs five times from the staff like crows on a wire. Words fulfill their meaning through phrases molding and shaping the line so that its apex hangs in the speck of time that defines temporal existence. And as with all orbits there is a point of no return, for it is only a matter of time before I will be consumed by heat and friction and cool atmosphere returning this body to the constant motion of rest and essence. I am assured and reassured by my faith in what I hear and experience.

And I am thankful.

I am thankful for a family as loving and supportive as mine. I’m thankful for the communities that have held out their arms and embraced me with love and tears and straightened fingers and blankets and peanut butter and music and the space to fall asleep. I am thankful for the opportunity to get to know great people in the medical field, compassionate men and women who walk beside me and heroically seek respite for me. And as strange as it may seem, I’m thankful for a life framed by true love and ALS allowing me to grow beyond the lesser person I could have been. When I consider the person I might’ve become, blind and ignorant and tone deaf in a world of art and knowledge and music, the gifts bestowed by my one true love and my teacher are beyond comprehension.

I know how this sounds. It sounds like I am resigning myself to death, even though the silence from which I write feels very much alive. But if I am resigned, then like everything else I have experienced through ALS, it is much better to be ready, to anticipate, rather than to pretend that existential stasis is actually real. Like preparation for the performance of a beautiful yet challenging piece of music, this quiet serves as rehearsal time, a human attempt in the great liturgy that frames life to try to get it right. It allows me and my loves to practice for the moment when quiet is the best gift that we can expect in spite of the noise that always frames the ending. It allows me conservation of energy and the liberation of spirit as I spend time, delicious and beautiful with friends. It allows me to breathe in the honeyed sweetness, the life presence of my one true love, unencumbered by the baggage we think we will require, supported by the truths we will actually need – love and life and laughter and tears.

In the three plus years since ALS framed my life, I have sought to be engaged fully with life as I knew it. Now, it seems more important to engage with life as it is. I hope this means more time with loved ones, both friends and family; more evenings with Ev listening to the local classical station, drinking in each other’s presence and knowing full well it will never be enough; more yoga with Jon and Kirsten and loving joyful visits with my granddaughter and David and Athena, family meals where I can barely keep up with the conversation; more naps during the day and deep sleep at night. I hope this means more time to think, to listen, to perceive that in the silence is life and death and life again.

And maybe, I can kick the last vestiges of infection, bone chilling cold, and dis ease.

December

We are smack in the middle of holiday purgatory, that time in December between Christmas and the New Year. Having grown up quasi- Christian, my interpretation of December falls between the constraints of Methodism and my accrued experiences of this darkest of months. There is something far more primal, essential, basic that seems to transcend the fantastical stories and minor miracles associated with December holidays, for in the northern hemisphere, at its most elemental, the month is about darkness and light. You can extrapolate beyond – death and birth, Alpha and Omega, ending and beginning, and having now lived with ALS for three years, I often do. But dis ease puts great distance between the religious connotations of December and the reality of its darkness, and ironically, the further I get from December’s religious overlays, the closer I feel to God.

In the silence, when darkness and light are allowed to speak for themselves, human interpretation is always inadequate.

Just in the past week, my Ev stated, “I think this is my second least favorite Christmas.” This was in response to her encounter with a flying Christmas ornament resulting in the breaking of her hand. It probably would be nothing more than a nuisance if we had another pair of hands in the house. But between us, we now have one good hand, and that hand is non-– dominant. And of course her declaration prompted me to consider what her least favorite Christmas might have been.

There is a lot from which to choose.

In my experience, I have no difficulty in recognizing December’s darkness. Even without an ALS diagnosis, in the 32 years that Ev and I have been together, December is as likely to be about darkness as it is about the anticipation of light. The darkness is almost a litany. Some years ago, we watched our sons struggle while at the same time adjusting ourselves to the loss of our family’s patriarch. I still carry the imprint of a Christmas night spent in tears – Ev’s mom mourning the loss of her husband, our son mourning a life that was and would be no more, our other son clearly confused and not yet ready to move in a new direction, Ev and I feeling totally helpless. There is nothing like the emotional fog that comes with that kind of experience. Another Christmas, we wondered if the joy of the birth of our second child would be offset by the diagnosis of leukemia in our first. Thankfully, this was not to be, but it left us tasting the fear that all parents feel for the health and well-being of their children, only exponentially intensified. During our first year in Cairo, one of my high school students died of a drug overdose, and his death was a vortex that dragged families into repatriation and our school into the self – recrimination that can only come with such a tragedy. December lasted months that year. And when I was 14, I experienced the unimaginable act of cradling the head of my dying friend as we walked home from basketball practice. A 40-year-old would not be equipped for such an event, but for a 14 year old it reverberated down the decades and still nips at my consciousness even today.

These are but a few of the high points of December’s darkness.

In the dark, it is colder, more isolated, alone and bounded. In the dark, we forget love and life and the truth of our humanity. In the dark, the false promise that light has fled the world overwhelms us and leaves us in a state so blinded that it is impossible to perceive any other choice than despair. In the dark, humans cast about in desperate search of any alternative, throwing in with false prophets and commercial ventures that leave us even more empty of the light we so desire.

Listen, in the northern hemisphere, December comes, and darkness reaches its apex.

ALS has taught me that even when the light of the world goes out, the light of your heart remains. It may be harder to discern it, to feel its presence, especially in the thick darkness of ending, but every ending spawns a new beginning. It is the endings where the dark is most easily perceived, overwhelming the tiny points of light present in the birth of something new. My brother in ALS, Stu knows this:

“If you are now expecting some surprising uplifting learning from these experiences I’m afraid I must disappoint you dear reader… The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?”

The fact is that in the darkness it may seem that there exists nothing uplifting, yet the darkness lifts up – advent, a new chapter, a page turn, a death, a birth. In the end, the light that comes to the darkest of places is not a light that we find, but a light that we bring. Dis ease exponentially multiplies the difficulty for us to see the light within ourselves. My brother Stu is clearly at that point, and all I can say is that his light shines out of his own darkness onto my life. The question he asks is the question we all ask. It is not specific to ALS, rather it is the question of a life well-lived. It is a question of truth, raised in December’s darkness, reflective of the light with which he has illuminated all of us.

Listen, in the northern hemisphere, December comes, the earth wobbles and darkness ends. We begin the slow upward journey into the light of sunny days and late evenings and warmth and short sleeves. There will be cookouts and beer on the patio, the freshness of spring and the indelible smell of summer. Earth will wobble again, the fall will come, and light will end. The Alpha and Omega, stripped to its core is nothing more than the effort to engage darkness, yet find balance in the light of love and care.

And in the effort and the balance, the lightness and darkness, the ending and the beginning, faith emerges from purgatory, and Methodism and experience are not enough to capture its full meaning.

Love Notes from the Universe

Do you remember when you were in junior high, and someone “liked” someone else enough to risk the possible consequences of passing a love note, person by person, row by row until it arrived at the beliked person’s desk? Do you remember how the worst thing that could happen would be that the most “immature” kid, probably with the loudest mouth, would stop the progress of the love note and share it in bits and pieces, dribs and drabs of horrible embarrassment to the point where the sender wished the ground would open up and swallow them whole so that the nemesis, the beloved, classmates, teachers, the entire school would never be faced ever again? It was a cruel lesson – the risks of declaring your love were not worth the embarrassment of the declaration – and by the time you reached high school, you probably learned to hide your emotions until you were totally sure that no one was watching and the person who was the object of your affection would actually return the feeling.

If you learned the lessons as well as I did, then the noise of safety and surety overwhelms your perception of love’s declaration.

It isn’t that you shouldn’t be careful. Sometimes it feels like some people exist with the primary focus of embarrassing others just for the entertainment value. But love notes exist. They are like spacecraft out past the edges of the solar system, or radio signals that continue to be received but not decoded. Even when it seems like nothing can go your way, the universe sends declarations of love, some quite general – a sunset or a moonrise; others very specific – a chance meeting or a message from the past. For me, it wasn’t until I became aware of how dis ease humanizes, that I realized how pervasive these messages were, how many of them were directed at me, yet how frightened I was that somehow or another some version of that loud mouthed kid was still around looking for ways to embarrass me with my own emotions.

If the fear of love’s expression isn’t dis ease, then I don’t know what is.

In the early days as I was slowly awakened by ALS, I marveled at how often people would relate their own dis ease in the face of my challenge. Their pit of the stomach narratives were often prefaced with something like, “Of course, this doesn’t even compare to having ALS like you do,” as if such a comparison would lessen the effects of their personal condition. Just in the past few weeks, old and new friends confided their own ALS lessons in practiced tones and whispers, sharing the loss of mothers and fathers long ago taken, years of anger and sadness and confusion so that in the hearts of my friends, their parents’ deaths might have happened yesterday. As they talked, as they cried, as they worked through the fact that some of them did not even know what was wrong with their mom or dad, or even in the knowing were not allowed to acknowledge that ALS was taking their beloved parent, I knew I could offer no meaningful comfort. But being in the presence of such tender and raw emotion, such beautiful openness, breathing the same air, listening as they worked their way through the years of pain, navigating their hurt into a more nuanced space that acknowledged how complicated life and love and dis ease truly are, was like receiving an encrypted message. And even though comfort could not be offered, it was taken by both of us in the courage of the expression.

If you can quiet the noise, love notes from the universe make their way desk by desk and row by row.

Less than two months ago, I truly believed that my time was finished. I was always tired, and I spoke in whispers, afraid that if my voice was any louder, it would overwhelm the holy act of dying. I planned my funeral, mustered all the energy I could find for one final push of writing, reframed my dis ease in the comfort of a life well-lived and the regret of a life cut short before its time. I was convinced this would be my last Christmas, my last anniversary, the winding down with the family and friends that I love. In that time, my heart became very quiet, and my hearing acute. Suddenly I realized that whether on the stage in front of a thousand people or in the quiet intimacy of my own thoughts, the love notes that before had to disrupt my awareness in order for me to perceive them, required no such violence.

In the quiet solitude of winding down is the ocean roar of love.

One of my greatest worries has been the hurt my death will inflict on those I love the most, and I now realize there is a love note for that. Recently a friend, out of the blue, reassured me this way, “I know you are worried that by leaving your loved ones in death, you will hurt them. And they will be sad, but it will be a beautiful sadness. It will comfort them when you are gone.” Where did this come from? We were just enjoying lunch together, when she offered this remarkable comfort. And had I not been so quiet, I would have missed its solace.

The love notes are there when you need them the most.

In the week that followed our program at St. Thomas, my fatigue and vulnerability, underscored by the frenzy of preparation and the emotional letdown that often occurs after such an event, led me to believe that neither love nor friendship nor beauty could possibly rise again above the gray fog pressing down upon me. And then I received a love note from a friend that I have not seen in 30 years. Her message ended, “You are dearly loved.” It was a reminder of how closely we had worked together, how openly we had shared our passion for the education of high schoolers in a small town in Indiana, how synergistic our relationship had been. But how did she know that such a simple statement would be the fresh wind needed to blow away the fog and fatigue at that specific time?

I am convinced that if we can quiet our inner tempests, the love notes carried by the universe will be present.

Sometimes, the universe sends you love notes – not frilly ones, never with chocolates and roses or dinner invitations, never sexual or overt, never seeking to embarrass the recipient. The universe sends you love notes at your most vulnerable, at your most beaten-down, when you are fatigued in the midst of enormous energy or alone in the midst of loving crowds, when you are sad in the midst of great joy, when you are amazed at the confluence of time and space and friendship and comfort. They arrive in strange clothes and surprising music, in cacophony and quiet moments. They lift you at moments when you feel crushed and at moments when you might only know despair. And it doesn’t matter if that kid in the back row reads them out loud or not. They are love notes, after all.

And for me, their message is clear: I am not finished, at least not yet.

The Ghost of Christmas Past

One of my very favorite stories is Charles Dickens’ A Christmas Carol. While most Dickens scholars see this as one of his lesser writings, I love the social, cultural, economic, political commentary that he so accessibly offers. And even though you would think that at my advanced age I would have Christmas Carol fatigue, each year in the weeks leading up to Christmas, I make sure that I engage with this story in some way. The Christmas season just isn’t right until I get my Christmas Carol fix. The fact that Dickens presents this morality play using the temporal characters of past, present and future is an acknowledgment of how time takes on meaning both good and bad. For me, my present time is framed by ALS so the future is known and just not that scary. But the Ghost of Christmas Past haunts me, for it is in the near past that this time of year inspires my worst regret.

In our family, this is a week of anniversary, in large part because on December 7, 1941 my father-in-law experienced the horror at Pearl Harbor. He was really just a kid when this momentous occasion took place, but it shaped him to squeeze every last drop out of the rest of his life. When he died at the age of 87, he was disappointed that there was so much more he wanted to do. We were as disappointed as he was, and the gumption he demonstrated in both his life and his death makes me miss him so much that I ache. His life was a great example of how a global event, so destructive and horrible, could be used to do good on the local level.

Less globally, it is also an anniversary for my family and me. Three years ago on December 6, 2010, I was diagnosed with ALS. On this day began a life first restricted by disease’s demands and then freed by my acknowledgment of dis ease as both a challenge and a friend. But, you can imagine how difficult it was to honor the upcoming season that year. In Dickens’ words, we suddenly realized how difficult it was going to be to hold Christmas in our hearts. Faced with the demands of sharing our news with family and friends, colleagues and constituents, our hearts were so heavy that I wondered whether there would ever be any celebration again. Thankfully we went ahead with as much of the season as we could muster, putting a brave face of joyfulness on the occasion even though we did not feel particularly joyful.

ALS can be quite the killjoy.

Now in the days around December 6, I find myself reliving 2010 – those days that led up to my diagnosis and the days immediately following. It doesn’t matter that it was three years ago, it doesn’t matter that I have had plenty of time to get over it. It is my own version of PTSD – and the moment of truth haunts me just as much now as anything else from my entire life.You see, it was not the actual news. While that was crushing enough, it was the lack of human connection as the neurologist delivered this blow to our hearts. Of course, he had to tell us. But the delivery of anything as life-changing as, “You have ALS,” should be spoken as humanely and compassionately as possible. This was not the case. Instead, he created an environment so inhumane, so remote, so cold that we left the office without any sense of possibility except total despair. He sat staring at a computer screen, a 6 foot massive desk between us. He dismissed my beloved to a remote corner of the room. He offered no preparation, no real explanation except for what I could pry out of him. In what should be treated as the penultimate moment of human holiness, he protected himself and profanely reduced us to less than human.

On December 6, the ghost of Christmas past sneaks up in the strangest ways.

I recognize that it wasn’t my fault the way the news was delivered, but the fact that I was not in immediate proximity to offer comfort to my beloved still haunts me. I would do anything to take more control over that moment of truth. I would hold the hand of the one I love, I would hold her eye with mine, I would let her know in every way possible the reassurance that I wasn’t going gentle into that good night. I would do anything to stand between the arrogance of his self protection and her dismissal to the corner of the room. And while today, my true love is defiant in the face of the past three years, at that time it put her to bed for almost a month, fearful that every breath she heard me draw would be my last.

At this time of year I wish the spirits would quit revisiting my weakness in the moment when I should have shown the greatest strength.

For years I had the privilege of teaching leadership ethics. Fundamental to the understanding of Western ethics are the concepts of ethical means and ethical ends. In my way of teaching, prying the two apart was possible but not desirable. I tried to empirically show that means without ends were just a nice ramble in the park with nothing to show for your efforts. I tried to critically teach that in the exercise of any kind of ethical leadership, ends without consideration of the means that got you to them would always be corrupted and untrustworthy. The doctor who delivered our news violated these basic ethical considerations. He delivered the goods, but he did it in such a way as to leave us sicker than the original diagnosis. My ghost of Christmas past would have me go back and speak with him to help him to understand the harm that he caused us.

Physically and spiritually, I have progressed far since that day three years ago. In December 2010 I walked in under my own power. Today I need someone to place my hand on the joystick of my wheelchair. While my body is still present, it no longer tolerates the logistical preparations requisite to the places that I would love to go. But my heart has learned a new presence, a new compassion, a new transparency, a new fearlessness that could only come with ALS as my teacher. My progression has been inexorable both physically and spiritually. I have learned relentlessly, and I do not begrudge the learning. The ghosts of Christmas past, present and future continue to engage me with their lessons and carols of simple complexity.

Like my father-in-law, I have sought to take my own trauma and turn it toward some good, to squeeze every moment out of life, to love and to listen and to teach as best I can. I have tried to be a better father, a better husband, a better friend, a better leader. But my inability to stand up to something so wrong, knowing full well how harmful it was to the person who I love more than life itself, who I would never knowingly harm, will always haunt me.

On December 6, Dickens’ story holds new meaning and unresolved regret.

All Good Gifts

It is that time of holiday truce between Thanksgiving and Hanukkah and the season of Advent, and I am reflecting on the many gifts I have received since my rebirth in ALS. In my three years since diagnosis, it has been so rare to feel like there was something I could do about my physical regression. I have gotten used to the idea that, as one of its gifts, ALS takes and all I can do is anticipate the loss. This is been borne out by experience, for example my mobility has regressed from walking with the support of a cane to a walker to using a scooter and now spending most of my time in a power wheelchair. The decline of my physical capabilities has been inexorable, and the challenges have become, especially in the past three months, exponentially iterative – one multiplied on top of another on top of another. It should be no surprise that I had come to the point where I despaired that anything I might do in anticipation would be totally palliative in nature, holding off the inevitable and trying to maintain where I was for a few more days or weeks. I had come to despair that nothing would result in my feeling better, that each day would be a little closer toward death, that the best I would ever feel would be right now, because the nature of ALS is to feel worse and worse and worse. Thankfully, in the past month that situation has changed.

In June, I was tested for diaphragmatic strength and phrenic nerve function to see if I might be a candidate for a diaphragmatic pacing system or DPS. Much like a heart pacemaker, only with the power source outside of the body, the diaphragmatic pacing system stimulates the diaphragm causing it to contract and not so gently forces the person to haul in a large breath of air. The DPS was first approved for persons with spinal cord injuries as a way of weaning them off of a ventilator. Aside from the initial surgery to place the electrodes in the diaphragm, the DPS is far less invasive and requires much less maintenance than a ventilator to keep it going. Over a year ago, the Food and Drug Administration approved the DPS on a compassionate care basis for the treatment of ALS. I have been watching with great interest other brothers and sisters in ALS who have had the DPS installed, and I have been doing a great deal of research on the pluses and minuses of the system.

Having passed the June test, it came down to waiting for my breathing to deteriorate into the treatment window that Mayo uses for its protocol, and to file with my insurance to see if they would support the procedure. Those two events came together in mid – October, and I had to decide quickly whether I would do the procedure or not. One reason you might not go through with the procedure is that the surgical team is not sure whether the DPS can be implanted until they have you open and they can stimulate the diaphragm directly. If it contracts, all systems are go; but if it does not, then they close the incision and send you home. I have had enough disappointment already, so even as I scheduled the procedure at Mayo, I steeled myself for the distinct possibility that my diaphragm would be too far gone for the procedure. But it was a rousing success. On November 14, I had surgery to install the diaphragmatic pacing system, and on November 15, I began the process of calibrating its stimulation to the wide smiles of the medical staff.

And here is the first gift.

I feel better. I am breathing more deeply, tolerating the electrical shock to my diaphragm very well, getting used to speaking around the delivery of the shock, and ironically, in spite of fatigue from the surgery, I have more energy. Unlike every single palliative intervention that we have made in the past three years, the DPS has actually helped me experience improvement. I am even sleeping more soundly, though not with the device, and my voice feels stronger than it has in a number of months. What a joy to experience any physical improvement.

Gospel! And there is more.

I have managed to solve some communication problems that I was having before the surgery. With the loss of hand and arm strength, I had lost the ability to use an iPad, to manipulate both the speech to text software I was using, and the smart house technology that I relied upon for basic functions such as turning on and off lights or music or other devices. In the past month I had despaired that I would be totally reliant on another person in order to accomplish such basic tasks. And to be truthful, I am so reliant on those who are with me for such simple things as straightening my fingers, placing my hand on the joystick of my wheelchair, or doing a bit of range of motion just to relieve the physical effects of ALS. But in communication, with a stronger voice and new technology workarounds, I am beginning to find a bit more of that independence that I value so greatly. Using an actual laptop computer instead of an iPad has allowed me to interact totally by voice, and while I am not back to 100% of what I was, the 85 to 90% is highly acceptable. So, even though this is more of a symptom handler, in conjunction with the DPS, I feel like I have voice control over my life again.

But, dis ease insists that the shoe must drop.

Over the past three years, I have worked hard not to be hopeful in my progression. I know that sounds strange, but I have learned that in such hope, particularly with ALS, lies crushing disappointment. I have sought to be realistic and honest and truthful with myself about my prognosis, my life as it continues, my life as it ends. With the installation of the DPS, I find myself having to reconcile this little uptick in how I feel with what ALS hammers home day after day after day. I mustn’t hope for more than is possible. What is possible is that I will feel better for a while, that I will find my voice again for a while, and that my physical body will continue to deteriorate. Reconciling the juxtaposition of deterioration with the tiny flame of hope that the DPS kindles has become a new life task for me. I am by nature a hopeful person, and I have managed to channel my hope into the lives of those for whom I care and that I love. My hope is for humanity, and that through relating my experiences it is helpful to find deeper humanness. And I have learned not to hope for myself except to accomplish this life as best I can within the framework of the circumstances in which I must exist.

My new reality is really just my old reality – I will fulfill body and spirit as designed.

In essence, I am granted the gift of spiritual rationalism. It is in the nature of the human body to wind down until death. It is in the nature of the human being to hold death off for as long as possible. These are facts. One can leave you depressed and morose, the other unrealistic and silly. So I now seek to continue my process of reconciliation, feeling better yet getting worse. I know that none of this is a cure for ALS. Just as Leonard Cohen points out that there is no cure for love, ALS points out that there is no cure for life. But, to have a procedure that results in feeling better almost immediately, coupled with finding a way to bring voice control back over my environment, I have a more positive outlook than I have had in months. I know that ALS continues, but I feel more the possibility of this spiritual and physical and emotional goal I articulated to myself three years ago – to live fully until I die.

And this is no holiday truce – each of us is granted the gift of living in hopeless possibility.

JFK

Last week was the 50th anniversary of the assassination of John Fitzgerald Kennedy. I was in the second grade when JFK was murdered in Dallas, and this past week I have allowed myself the melancholic introspection that comes with diving into the many specials, web streaming, and newspapers from the time, reliving the story as it were. With all of its impact, even 9/11 did not affect me as President Kennedy’s assassination did, and it was with more than a bit of trepidation that I allowed myself this privilege of listening and reading and watching. I wondered if a man of 57 living with ALS would experience the same raw effect as the boy of seven living with the idea of his whole life ahead of him. What I discovered is that not only did the strength of the story hold up, but its meaning was enhanced by the introspective lens 50 years of life experience can bring. What I discovered was that in the assassination was my first experience with dis ease, significant for me for it changed the way that I saw life ahead, and significant for our collective national identity as it began the downward slide of trust in the important institutions that have kept us centered since the great war. For the nation as a whole and for me as a seven year old child, the assassination instilled a fear that at any moment, all might be lost in tragedy and horror.

Pretty heady stuff for a second grader, don’t you think?

I had never seen my father cry  before Kennedy’s assassination. I had never held such insight as I watched my mother struggle so hard to hold things together with the sudden knowledge that she felt responsible to reassure me that things were going to be all right. There was no such struggle  with my dad. He insisted we watch the funeral with his dad, my grandfather. We weren’t allowed to play outside on that day. No one was! On the day of the funeral, the sadness was like a blackout curtain long neglected with dust and tears hidden in drapery folds creased by time, suddenly floating in the air as the curtain was pulled closed to keep out the light and hold in the sorrow. I remember how we watched the marching soldiers, the flag bedecked caisson, and the elegantly dignified, unbelievably poised widow as this great national liturgy played out. No one could possibly predict on that November day how this story, this unbelievable narrative would affect the national psyche in the long-term. In Richmond, Indiana, where I was living at the time, it rained a freezing rain on November 22, 1963, but the day of the funeral was crisp and cold, with a weak sun shining on the naked tree limbs so freshly lost of their leaves, standing bereft in solemn witness to our shock, our horror, our grief, our out of body sadness. We watched heads of state, the first family, their shock and horror and disbelief playing out like taps on a bugle. We watched the country move from the black and white starkness of the announcement that Kennedy was dead to full color, an American flag striped blood red covering the coffin and accompanied by muffled drums, the meaning further underscored by the first color TV that anyone in my family had ever owned. And the grief of my parents multiplied throughout the day of burial, spilling out into the room and lapping against the sands of our own childish sadness in warm waves of tears and anguish.

How can you not be changed by such a propagation of adult tears?

Today, pundits and opinion writers state that the assassination of JFK was the beginning of the divisiveness we now find in American politics. It is a thesis that plays well 50 years later, especially with the benefit of 20/20 hindsight. But it is a thesis that requires answers when in reality no answer is adequate to the task. The assassination of JFK spawned a national angst from which we never recovered. It created a need for assurance, requisite surety from our politicians, our religious leaders, our captains of industry, our intellectuals, our artists. Yet even when they spoke the words, deep down inside we knew that such surety is impossible. When the national psyche, indeed the psyche of the world is so gracelessly torn, it raises the most basic, the most obvious, the most primal of questions – if the president of the United States could be killed by such a little man in such a public way, what does that mean to my own safety? And when personal safety becomes the primary focus, then humanity is left open to all kinds of manipulation — from secret wars that defy our moral bearing to susceptibility to the ringing rhetoric of a polished statesman. We became a people that denied the reality each one of us faces. We denied our dis ease, and in the denial came an every person for themselves isolation and loneliness.

The assassination parallels in so many ways the diagnosis of a mortal disease, choices proffered in black and white, morphing into blood red realities that are stark yet not easily discernible. Disease divides us from each other, tricking us into believing that our safety is no one else’s concern and that we are terribly alone. It leaves us susceptible to the need to hear only what we want, what we fear, to deny the reality that is, to seek individual cures and turn our backs on collective healing. Our national angst turned into national denial. It became our national disease, and the more we asked of our leaders, the more lies we heard, the more isolated we became, and the less we received.

The choices of dis ease became the loneliness of disease, and we were sore afraid.

One does not need pundits to argue that faith in government, religion, schools, universities, business, and a whole host of other institutions would never be as strong as it was in the days before November, 1963. We are not just divided, we are alone. Lonely people make desperate decisions requiring greater assurances, greater flights of fancy, greater denial of probability, greater lies that underscore the greatest lie of all—that we can go it alone. November, 1963 was a dis ease moment, a place where we could choose to embrace each other in the collective space of spontaneous humanity or embrace loneliness with the false promises that our national disease and hence our individual angst would be cured. In the days, months and years that followed, we chose to believe that we might be immortal, that this life could be so easily controlled as to remove all spontaneity, all chance, all the bad things, to eliminate any possibility that our princes and princesses would ever be gunned down so easily again.

Dis ease offers choices, disease offers lies.

The Kennedy assassination resonates in the timeless ether of five decades. It plays a polytonal string quartet in the keys of dis ease and disease. On the one hand, it tells us that life’s ease is fleeting but choices abound for us if we will turn to each other. On the other, it tells us that we are alone but somehow we can beat our fate. One key is a key of truth, and the other is a harmful falsehood. ALS, my teacher, requires me to unlearn the lonely lessons embraced fifty years ago, and to sing in a key of beautiful, human, messy, vulnerable space where each of us is afraid and no one knows any fear.

It is a place where mothers and fathers cry in front of their children, and their tears heal the hurt.