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.

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.

Looking Good

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

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

Old habits die hard.

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

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

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

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

I have ALS.

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

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

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

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

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

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

It is the disruptive blessing beyond the look.


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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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


It is inevitable, even natural for those of us with mortal illness, to think about our own funerals at some point in the dis ease cycle. Before you become overly alarmed that this week’s entry will degenerate into maudlin, whimpering memorial instructions, let me assure you that I will not be discussing any postmortem planning today. That isn’t to say that I haven’t thought about it, but you will just have to wait until I have crossed the great divide for such discovery. Instead, I bring up funerals because this week, I had an experience not unlike attending my own wake, my own funeral, causing me to consider how we do death, how we do life in this strange human forms we occupy.

There isn’t a culture or society that doesn’t in some way mark life’s passage through significant ceremony. What might look strange from outside the culture is perfectly normal inside. In high school, I remember reading about a society that dug up the bones of their ancestors every five years to take them out to restaurants, give them cigarettes and take care of those earthly pleasures the deceased might be missing in the afterlife. From my high school perspective, this seemed quite bizarre. But as I began to turn critical lenses on my own culture, my own background, my own society, I realized that this was no more strange than embalming the body of a great philosopher to sit watch in the school hall where he was headmaster, or of the practice of specially built rooms with red and blue lighting to ensure some faked lifelike quality to the mortal remains of the deceased, or the ossuaries in countless European monasteries and cathedrals with their piles of sorted bones from the men and women who served within.

While seemingly strange from an outsider’s point of view, many traditions surrounding death are based on practical need. Jeremy Bentham’s earthly remains aside, the ossuaries and funeral homes and entertainment of ancestral remains resolved cultural issues surrounding the dignified and ceremonial marking of the life and death of humans. And in our culture, the particular tradition found in the practice of the wake has specifically changed in form and function to accommodate both the practical and the sacred needs a postmodern death presents.

It isn’t known for certain when the practice of the wake was started, but most experts would agree that the term wake is from the practice of the family remaining awake with the body over an extended period of time to ensure that the departed was actually deceased. Many pre-20th century horror stories are based in the fear of being buried alive. Such an ending was considered to be so horrific that it inspired tales of the undead wreaking havoc on those who had propagated the horrible act in the first place. And it inspired the practice of sitting with the body and checking from time to time for signs of life to avoid such events. Family wakes morphed into the practice of the visitation when friends view the body of the deceased and greet the family as a sign of respect. The practice continues to evolve, so that remembrance and laughter sometimes encouraged by Irish whiskey and bawdy humor, are considered to be as appropriate as traditional tears and sadness and feelings of loss. It is a shame that we don’t get to attend these events held in our honor while we are alive, for the practice of sharing the deep feelings of love and gratitude for the life well lived is generally reserved for “roasts” of the rich and famous, or as is the case of the wake, for postmortem remembrance.

I cannot help but think that humans are impoverished by such practice.

One of the great gifts of ALS results from its speed of progression. ALS is not a gunshot severed, car accident, 100 days to live brain cancer; the sudden and heart wrenching black hole death that leaves lovers and loves alone in the endless caverns of their souls, pouring grief and remembrance and remorse and regrets for words and feelings unheard and unsaid in some vain attempt to mitigate the departure of their loved one. In each host body, ALS moves at its own speed–50 percent mortality after three years, 80 percent after five and 90 percent after ten. The greatest ALS gift I have experienced is the time afforded wakefulness, Irish whiskey notwithstanding, encouraging both formal and informal expressions of love before mortality, of declarations of meaning before death.

This past week, I was granted the privilege of love’s expression that is usually disavowed and kept separate by the professional environment. My friends and colleagues at St. Thomas offered up a time of remembrance and laughter and tears and joy, allowing us to say what was inexpressible when I left. An emotionally charged and highly meaningful event, it left me exhilarated and exhausted and highly reflective on the nature of life and love and the insistent teaching of dis ease. Indeed, my dis ease teacher asked, “What were you waiting for?”

I guess I was waiting for ALS.

It is so easy to withhold ourselves, for we are taught the benefits of remaining circumspect and less than forthcoming. When I write, I sometimes hold back things that I deem hurtful or embarrassing or that might make me too vulnerable to others, or them to me. Such prudence is a valuable skill to develop, especially in discharging leadership responsibilities where the inappropriate or premature disclosure of information can be harmful. But there is a price to such non-disclosure. We also lose the distinct, even sacred connections, human to human, that make for the spiritual life intertwined in the holiness of each other. If I extrapolate on the teachings of dis ease, the honest sharing of feelings is an opportunity often missed.

I cannot tell you how many times I hear from friends the following: “I read your blog, and I don’t know how you do it. I could never be so open but your openness helps me.” I am thankful for that sentiment, but it inspires in me the dis ease question, “Why not?” Dis ease strips away embarrassment and completes the lesson–we are meant to share this human existence in honesty and love, and our value is in the value we build in each other. To express our lives is an expression of love. To not express that love, to withhold it out of fear that others would think less of us, demeans our humanity, raising fundamental questions of being. What are you waiting for–to tell someone what they have meant to you, what they have done for you, how their presence and love and joys and sorrows and defeats and challenges and victories have fed your soul, nourished your life, taught you a humanness you couldn’t imagine any other way? What are you waiting for to say, “I love you.”

So, attending my own wake while still alive and present, with words and feelings and experiences shared before death’s loss made the event too late, was the circle completed, the human connection sanctified, the love expressed. And honestly, in spite of a few pictures that maybe revealed my lack of judgment about hairstyle in the eighties, it is the most sublime experience I could imagine. I am thankful and awed and blessed by my colleagues and students.

What was I waiting for?

Nine Days in Italy

For nine days, Ev has been in Italy.  If you are looking for a tome on love unrequited or on just how long nine days can be; that isn’t going to be this little musing.  There are some things I choose to keep only for me, and while it may be clear that I miss Ev, I will spare you such prose.  But there is so much that has happened in the past nine days, such material, and yes such memory.  Travel has always been a priority, so the fact that she is in Italy and I am not, should tell you something, for such travel is probably beyond me now. And reflecting on our travels together, or on the fact that I am not with her is a new moment in dis ease for both of us, one that we anticipated, but never fully grasped.

There is an anticipation and preparation for travel that can be every bit as enjoyable as the travel itself.  The time leading up to that moment on the plane, the boat, the train, the car is both anxious and sublime.  When we first began to travel, we didn’t know how lovely the anticipation could be.  Even now, it is easy to lose that sweet perspective, even when you have the experience of preparation many, many times over.  And knowing how the anticipation works was not something that was easily learned.  Over time, I came to appreciate the joy of planning, of shaping a framework but not too much for the upcoming journey, because travel always reshapes the framework imposed upon it.  One of the things that travel taught us was that no matter how careful the plan, how detailed the itinerary, there would always need to be times of improvisation to account for the unanticipated reality of plans gone awry.  Some of the best experiences we ever had came from these moments, and some of the most frustrating.  The sweetness of dreaming the anticipation was that in the plan, everything worked. The joy of the travel was that it didn’t.  

And over time, we got better and better at anticipating the things that might go wrong, and the things that might not.  Our first transatlantic flight was the leap of faith that brought us, young in our marriage and with a 14 month old baby in tow, to Norway.  God what we didn’t know.  Poor David cried the entire trip (yes, we were that family on the plane).  I am now convinced that he was reflecting the anxiety of his young parents leaving everything we knew, like a mirror on our souls.  While it was always challenging to travel with young kids, it was never like this again.  We learned to reflect pre-travel anxiety only to each other, to plan for his  (and later Jon’s) needs, and trust that aside from the occasional incident–for example, once in Copenhagen, Jon managed to pull a computer down on his head at the check-in counter so SAS staff rushed him into the city proper for stitches and delivered Ev and the two boys directly to the plane just in time for takeoff–things generally worked out.  Travel teaches you to pack light with an extra pair of underwear in your carryon, knowing that in the most uneven grottiness of unwashed bodies for days on end, some evenness can be achieved.  This was always part of the beauty of travel, for we learned that in some way, we would get things back to some sense of stasis, some semblance of normalcy, some comfort level with which we could live.  Such knowledge is helpful in a storm.  

I don’t want you to think it was all challenging; some of the travel we have done has been sublime.  I still count our last weeks in Egypt, of which we spent 7 days camping on a beach on the Red Sea, as one of the most wonderful weeks of my life.  We undulated between watching satellites and shooting stars by night, and by day, snorkeling in the vast beauty of Red Sea coral, Napolean wrasses, parrot fish, angel fish, dolphins cresting, and remarkably dangerous animals–lion fish and sea snakes–warning us to be respectful.  Eating, sleeping, bathing, talking, laughing in this wonderland of incredible beauty with the desert all around us and the sea beside us, was a time I will never forget.  We were with friends on the beach, friends who had done this many, many times before.  And they guided us in so many ways, both in how friends spend a week uninterrupted together as well as what to see and how to protect ourselves from the relentless sun that illuminated occasional awkward moments.  Such is the height of friendship.

And some of the travel was remarkably affirming.  When we flew to Bali from Minneapolis for the first time, the comedy of errors that was both the flight to and from Denpasar would have knocked the most seasoned adventurer for a loop.  We took it in stride and became smitten, enamored of this remarkable island.  Bali is a place that teaches the importance of place, for every Balinesian that we have met needs direct communion with the terra firma that this island is, knowing that spirits and ancestors are just under the stones in the yard of your birth.  And we learned this lesson, that a sense of place centers us, even when place cannot be perceived.  Bali has changed enormously in the last 15 years, and though we have returned twice to experience its beauty and culture, nothing will equal the excitement of our first trip there when so much went wrong, and ancestry and culture and center and place were introduced in a way that we had never before perceived.  This is why we go to places we have never been.  The vistas that were opened to us required an engagement with the world at a level that always asked for more until there wasn’t anything left to give, and yet we always returned.

I’d bet at this point, you are thinking that I am going to point out the vast parallels between travel and dis ease.  I could, I really could.  

The anticipation and acceptance of diagnosis and treatment, the need to roll with the setbacks and celebrate the affirmations, the challenges that require a stitch or two, the new experiences that teach in a way you’d never learn if you remained in the same place, the inner vistas that are opened up and the old knowledge that becomes strangely irrelevant in the new contexts; all of this parallels the dis ease journey.  Yet, the parallels are of less relevance to me than the vast differences.  ALS is an 18th century island penal colony at the end of the world.  Once you are on that ship, there is no going back, no stasis to center the journey’s cadences, no return to the home from which you set forth even if you are optimistic about the direction.  There is nothing in my experience that is like this dis ease experience,  for everything I learned from travel is so inadequate to this peculiar journey.  It is nothing that underwear in your carryon will handle, and the grottiness of its effects are never undone.

I hear the musings of my brothers and sisters in dis eased arms, and I can tell you that even those in so-called remission never quite feel clean.

One year ago, we were preparing for what I knew in my heart would be our farewell tour to favorite spots in the world, Thailand and Bali.  Now, Ev continues on, bringing home her experiences for both of us to savor.  A year ago, we prepared for new experiences that would solidify into mutual memory of taking on the world on its terms, holding hands and facing forward.  Now, I am thankful for the flow in and out of travel memories sweet and tough and frustrating and soulfully open to a constantly shifting reality; no stone foundations in this space.  Instead of plotting the next adventure, I have homecare coming in twice a day to help me dress, eat, keep the place picked up and sit close by in case I cannot get up from the shower.  My plans cannot push beyond ensuring the basics.  I miss Ev, and I miss travel, and out of that comes new learning that can only be framed by the dis ease of this moment.

Ev is traveling for the two of us.  She moves our adventure forward into new places, and so do I.  She must learn to keep on keeping on without me physically present, and for that I grieve.  But a death lived fully must continue to take on the tourist challenges of taxies in Rome and the Alitalia way of doing lost luggage.  And I continue with her.  

I am there, honest–I am there.