Happy Complicated New Year!

In the four years since my diagnosis into dis ease, I have sought to make the best of a bad situation. In writing about the experience of ALS, my commitment has been to be as honest as possible, even if I felt the situation showed me in a less than flattering light. I admit that at times, I pulled my punches, relying upon my reader’s ability to fill in the blanks, not making me describe in graphic detail some of the more physically compromising situations I have experienced. I appreciate the space you have granted me in this respect. It has allowed me some semblance of dignity in even the most immodest of situations. But now in the past four months, I find myself more reflective than I have ever been in my life. And this reflective quality has made me question whether I have been honest enough. I am on the fringes of my life, and my feelings are confusing yet beautiful, frightening and powerful, profoundly spiritual while grounded in day to day experience.

In other words, my dis ease becomes more complicated, and communicating clearly about it confounds me.

The elegant hand of ALS holds great surprises. I never knew that so much grace and peace and joy could be found in the inexorable experience of dying slowly. Dis ease plunges me into a pool of beautiful sadness. It focuses me so that each day, I awaken with profound gratitude for my true loves, my one and only, our sons and daughters in love, our energetic, remarkably bright and ever-growing granddaughter. I am overwhelmed by the thankfulness I feel for friends, those who volunteer to care for me, those who engage me in their day to day life challenges, those who share gifts of music and poetry and yoga and life possibility. Yet simultaneously, an undeniable fatigue dogs me, washes over me, nips at my heels, impedes the energy I might muster for the very things that so delight me. The daily life challenges I experience – total dependency on others for the simplest of tasks, the continuing breakdown of basic physical functions such as swallowing and breathing and the like – exhaust me into sweet anticipation of the relief that will come with my death. Death has become a good friend, a harbinger of the final joy awaiting me, assisting me to shed the ALS revealed imperfections of my physical body. The spiritual conflict is clear – I am utterly in love with this ever deepening experience of living while at the exact same time I happily anticipate the relief death will bring.

I tell you this not to elicit sympathy, not to shock but to describe, in as honest a way as I can, what it is like to be a 58-year-old man with advanced ALS – it is complicated.

I suspect that this complexity is one of the reasons that we humans don’t like to think about death, talk about death, place death on the altar of our lives and give it the due it truly deserves. Death’s consideration seems so antithetical to life, to living fully, to the joie de vivre that all of us believe we deserve. For me, it wasn’t until I was confronted by death’s reality that the juxtaposition of life and death became even a little meaningful. And I also suspect that for the vast majority of us, this first juxtaposition takes place when a family member or dear friend faces their own mortality. Even here, the complexity is not readily apparent since it is someone else’s death with which we have to deal. Our feelings focus on disbelief and anger and grief at the loss of loved ones. Meanwhile, our own mortality might be briefly considered, but it is just too easy to ignore.

In the days before I believed in death, if I gave any thought to it at all, my belief would have been that death was singular, individual, and that it’s only lasting effects were a loss that those left behind would eventually get over. This was my own experience, in spite of the fact that death had been with me since the age of 14 when I suffered the death of a friend. As I matured, I witnessed numerous family members passing from this life. I had ample experience of other’s deaths, but no encouragement to believe in anything remotely resembling my own. The concept of living while dying was too complicated to incorporate into my day to day living.

Now, I am a believer.

The simple realization of ALS requires unvarnished honesty just to deal with each new loss. Living while dying is no longer a theoretical concept but a necessary reality, and it can be confusing. The conflicting feelings that frame the final months of my life have emerged a new reality. As much as I would like to go it alone, this new space is so complicated that support is a requirement and not an option. Going it alone makes no sense. Without support, life for me and those I love was becoming too chaotic. The noise of the chaos overwhelmed us as we sought to discern appropriate levels of care that conformed to the energy we possessed and the resources we had at hand.

This is why we engaged hospice care.

The decision to move into hospice provides experience and expertise to help us make these final decisions as the endgame becomes clearer. I say we, because ultimately it is our family that has engaged hospice care. My own imminent death, coming whenever it shall come, is not our only consideration. From the beginning, ALS has affected not only me, but family and friends. Hospice affords support for all of us. Now, there is a stability in our lives that was not present four months ago, and while the complications have not gone away, the meaning of our lives together continues to deepen. Our decisions are no less complex, but our caregivers, nursing staff, and others who are part of the hospice team provide a quiet, dignified and knowledgeable resource as we negotiate the inevitable irritations and discomforts that go with advanced ALS. Meanwhile, they support us in anticipating the larger challenges that lurk on our horizons. Inevitability and anticipation, love of life and welcome death is what we now consider, with all their joyful complexity and sad simplicity.

The challenge is to not allow the inevitable day to day comfort issues overwhelm the meta-dialogue about what it means to die well.

Our hospice nurse has a knack for asking questions that hone in on the issues that lurk below the surface, that define both a good life and a good death. These are the conversations that transcend the rashes and sore muscles and joints, the curled fingers and swollen hands and feet, leaving them in the functional dust of symptom and relief where they belong. It isn’t that symptom and relief are not important, it is just that once we have decided on the analgesic and patches, the padding and massage, the pills and painkillers to deal with each irritation and pain, there still exists a vast chasm between what generally emerges in conversation and what is left unsaid. This is where our nurse demonstrates such skill.

We have discussed what it means to die well. The endgame of ALS is too often framed by a sense of powerlessness. We feel powerless against the inevitability of each symptom, each loss that is in our future. There is no legal or moral reason to feel powerless, but our choices are often limited by the fact of who is treating us.  Hospice ensures that we can evaluate whether or not treatment unnecessarily prolongs pain and suffering or whether it provides relief. It should be our choice as to whether we receive any treatment and what that treatment should be. For me, a ventilator is treatment; a feeding tube is treatment. At some point for all of us, the balance tips so that in spite of the fact that we have a tremendous love for the life we have been given, it has also become so painful and difficult to live, that further treatment is actually cruel. To die well means to choose what happens as the ending becomes inevitable.

This blog has been one of the most difficult that I have ever written. It opens all kinds of questions that each one of us will face. Unless the goal of dying well has been rejected, we have to talk about these things. Death affects everyone, and the complexity of loving life and welcoming death is confusing. If we value dying well, filling out a form style, so-called  Living Will, does not accomplish the kind of deep conversation that all of us will need as we approach  our own deaths.  I have known that this time was coming for me, and there is still much that I wish to accomplish. This is hard stuff, but it ought to be. Life is a remarkable gift. The choice to end procedures that prolong it is very personal and requires great care and respect. Most of all, it requires honesty.

One of the reasons this is so hard to write is that each one of us carries our own baggage, our own interpretations of what it means to consider our deaths. Many of us don’t realize the resources that might be available to us (my hospice care is covered by Medicare for example). I don’t ask for your agreement with what I have written above, but I do ask that you respect my thinking about my own choices. And I do want you to know how helpful it has been to engage these questions with our caregivers from hospice. Too often, people are afraid of the reality of their life’s end and this causes them to avoid the support that is available until it is almost too late. The end of life is a confusing time, and we do not have to go it alone.

For me and my family, we now experience the support to better negotiate the next steps looming before us.

PS: please vote for this blog @Healthline.com. Currently, it is number 23. You can vote once per day, and there are 11 days left in the voting. Many thanks.

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What have you done for me lately?

When I was a full-time choral musician, I noticed a post production phenomenon that would occur after completing a performance, say a musical or a concert or a major work for example. People would congratulate us for our accomplishment. Full of praise and ebullience for what we had just done, they would offer kind words, compliments, appreciation for the hard work and level of performance we had realized. And then, invariably they would ask, “What have you got planned next?” Needless to say, such a question was almost always a mood killer. No basking in the limelight for us, no enjoyment of the moment in which we had pulled off a wonderful performance, the question of what was planned next always loomed in our musician psyches. I came to call this phenomenon, the “What have you done for me lately?” phenomenon, and I believe most  music performers would recognize the feeling.

What have you done for me lately?

In our Western way of thinking, we tend to believe that the sum total of our lives earns us a good death, and hopefully an even better afterlife. In the movie, Saving Private Ryan, the older version of Private Ryan requests of his family, “Tell me that I am a good man.” Standing before the grave of Captain Miller, the man who gave up his own life so that Ryan could return home from fighting in World War II, he falls on his knees and pleads with his family, “Tell me that I am a good man.” And because it is a movie, we are privy to the event over 50 years ago that leads to Ryan’s emotional outburst. As Miller is dying from wounds sustained in defending the younger man, he reaches up to the young Ryan, grasping him fiercely and hissing to him through clenched teeth, “Earn this, earn this!” It is a Western tale illustrative of just how much we connect the concept of merit and a good life. It assumes that we can earn the death of another through the life that we choose to lead, that such merit is equal to another’s death as long as we realize a life of goodness.

And we are not the only ones.

In Theravada Buddhism, one of the strong meta-narratives that shapes religious and cultural belief is that what happens in this life determines (one might even say earns) our next life as we traverse the eons, growing either toward Hell or Nirvana. In Thailand, there is a saying (please excuse the transliteration all my Thai speaking friends), “Chewit nii, Chewit naa,” which roughly means that what you do in this life will determine your next life. And of course, the concept of making merit is extremely important to a Buddhist way of life. In  essence, the Theravada  Buddhist  narrative suggests that the life we are living today is one that we have earned through past life, and what we do in the present will determine the future life to come.

In many ways this is an Eastern version of “What have you done for me lately?”

So many of you responded with such kindness to my last blog, particularly to the musings about whether or not the love that I have carried, held, felt for my family, my friends, my loves would be remembered after I am gone. Some of you almost scoffed, wondering what was wrong with me that I would even allow such thoughts to exist. Others sought to reassure me that I did not need to explore such questions. A few of you wondered if I was on a fishing expedition. All of these are appropriate responses, but they belie the fact that such musings are not idle speculation or questioning.

As one looks toward the last days, it is mete and right, normal and natural to question the meaning of one’s life, the impact that you have had, the joy and grief that you leave behind. Even Jesus questioned the whirlwind that brought his life to a close and ended his ministry on earth. I have never met a dying person who did not question the meaning of their own lives, and of course as I sought to comfort them, my own answers reflected the same responses that so many of you gave to me. There just isn’t any way around it. I suspect that in my final months, I will continue to raise these questions for precisely the reasons many of you suggested that I need not ask.

As I continue the ever smaller orbit of my mission on earth, I cannot help but notice how uncanny are the parallels between musical performance, life merit no matter the culture, and the preparation required for death’s ultimate recital.

In music, even when I felt I had completely prepared myself and my groups, even when I knew I could be confident in the performance we would give, there was always a nagging feeling that we might have done more, that we could have been better as we faced our moment of truth. And while I learned to enjoy the moment of performance as the apex of the musical experience, there was always a sense of letdown after it was over, a questioning of what could have been done better, of decisions made that resulted in the level of performance we had accomplished. Looking forward to the next performance and the next, it is no wonder that the question of what have you done for me lately emerged.

I guess what I’m trying to say is that my whining questions in the last blog are natural and normal for any human being, but especially for one in his last months of life. It is normal to look back and question the goodness and meaning of the life that we have lived. It is normal to be less than trusting in the idea that we have done all we can for those that we love, for whom we feel great responsibility. And it is absolutely normal to question how we have affected those whom we have loved in this lifetime as our lives end, and they move forward into a life without us.

When I first started blogging, it was my hope that as I wrote honestly about my experiences, it would be helpful – helpful to me in trying to analyze the meaning of ALS in my life, and helpful to others as they faced major challenges in their own lives. Now, as I face the end game, I don’t want to start withholding information, questions, musings, thoughts and feelings and connections from you or myself. The question of life merit, whether you think it appropriate or not, weighs heavily upon my soul. I make no apologies for I believe the question is highly appropriate when one is in close proximity to death. To be transparent and truthful, I feel that I must share the questions as they arise, no matter how logical or irrational they may seem.

After all, it is part of the rehearsal, the preparation for the performance, the technical realization and the affective embrace of a life well lived or otherwise. It is an ethic of honest analysis, an aesthetic frame of reference that shines crystaline light on the good and bad, the ugly and the beautiful. And I come by it honestly.

It is just another way to ask myself what I might have done…, lately.

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.

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.

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.

Endgames

Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.

Eulogy

Paul and I were brothers. Though we did not know each other for very long, we were brothers. We shared common interests, a love of family, adoration of our wives, easy love of children and grandchildren. And we shared a special knowledge, one so intimate and beautiful and terrible that we rarely spoke its name, for we shared ALS. Paul and I were brothers.

Initially, I met Paul through my blog, having just written my disappointment in the failure of an 18 month drug trial in which I had participated. Given the whiny tone of this particular blog entry, Paul made the decision to introduce himself to me in this most inimitable way – a little bit about him, a little bit about life, and a big hang in there. He wrote:

“I want you to know that you’re not alone. After a year and a half of pursuing cardiology and pulmonology we finally got to the right Department–Neurology. So I was diagnosed in May of this year, but in fact I am starting my third year since onset of symptoms.” … He went on to share my disappointment in the drug trial, adding his own comment on a stem cell trial that he thought was probably not on the up and up. And he ended with, ” I’ll come back at you again but what you wrote that I just read this morning compelled me to reach out now, taking a risk of sounding trite. I’ll just say Hang in there for now.”

So Paul reached out to me, partly in introduction, partly to comfort, but mostly because he knew we were brothers.

My first meeting face-to-face with Paul was at a place that many of you might find surprising. Paul and I were yoga buddies. We would meet at an adaptive yoga course, Paul driven by Dee, and me driven by a friend. We would do our best to fulfill the different adaptations of the yoga asanas, and the nature of the class always meant that our arms were out and our feet were up as we tried to live up to the desires of our teachers, who I guess I should add were female. One Friday, I received an email from Paul telling me that he could not come to yoga that day. “Tell those skinny ladies that I’ll be back next week,” he wrote, and I did, exactly as he wrote it, and they were delighted. More importantly, after yoga Paul and I would drive up to each other in our chairs, grasp hands and talk quietly. We talked about how life was going, we talked about grandchildren, we talked about our wives, and most of all just out of earshot, we talked about living and dying with ALS.

The first time I visited Paul at his home, I went with a caregiver, Natalia that we both had shared. She tried to prepare me for the experience, telling me that I would probably have to be a very good listener. I reassured her that I thought I could be as such. But to be honest with you, I never have heard a man who could segue from story to story to story without taking a breath, and this was in spite of the fact that he was struggling with his breathing. Paul, on his own turf, was one at which to marvel, to shake my head, and to laugh and to cry.

To me, Paul was larger-than-life.  Overcoming numerous life challenges including surviving a major heart attack, Paul once told me that his heart attack changed his outlook on dying. He told me that ALS could not scare him, because he had seen what was to come. He said, “All of this stuff,” and he waved his hand, “is not that important. It’s much more important to love your friends.” And when we left each other that day I told him, “I love you man.” And Paul replied, “I love you brother.” After that, whether it was a phone conversation or a visit or yoga, we made sure we told each other we loved each other whenever we said goodbye. ALS taught us that life is too short to not say the things that are true.

I was asked if perhaps I might talk a little bit about what it was like for Paul to battle ALS. I have struggled with that part of this eulogy, not because Paul wasn’t valiant or brave or strong. I’ve struggled because when you do battle, it is too easy for the enemy to define you. Paul refused to be defined by ALS. He battled its symptoms, he rebelled against what was good for him; I cannot tell you how many conversations Paul and I had about adventures in the bathroom. But ALS could not define him. Instead, he told stories – stories of his childhood, stories of great challenge, stories of his work life, stories of his family, stories of goodness and love, always with a bit of wit and a bit more a moral. If anything, Paul defined not so much the battle, but how to make peace with a life in ALS.

Six days ago on Sunday afternoon, my son and daughter-in-law drove me to Waconia to see Paul. I knew it would be the last time I would see him, I knew. When we arrived, Molly met us and through tears told us that Paul had rallied. We went into the room and there was Paul – surrounded by a pink neck pillow, a monkey backpack, and all manner of family – Dee ever present, sons and of course, Molly. They graciously allowed me to roll up next to him, and he grasped my arm as if he would never let go – I can still feel it today. Paul introduced me to his family saying, “This is my friend Bruce. He is a good listener. And I tell him stories.”

Paul was in that holy space between life and death, lucid for one minute as he spoke of his needs at hand – a bit of water, an adjustment of the pillow – and seemingly beyond all of us in the next as he commented on how beautiful was the view. One of the last things he said was, “You can see the view from Highway 7.”

In hindsight, I now realize that of all of us in the room that day, Paul was the most aware and lucid.  You see, about a month ago Paul and Dee visited my wife and me at our home overlooking Highway 7. Far from moving in and out of lucidity, Paul offered the same gift as when he initially reached out to me. He reassured us beyond our own ability to perceive, that there would be beauty. And for me specifically, a brother in ALS, he offered comfort, prescience, a glimpse of the beyond, that it would be beautiful, and I would see it.

As I said, we were brothers; we shared a lot. When I left, I told him that I wouldn’t say goodbye because I knew we would meet again. In my future, and probably in all of yours, are many more stories from my friend, my brother – Paul.

I love you man.