Maundy Thursday, From the Silence

I was privileged to offer the following last Sunday.

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

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

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

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

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

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

 

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

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

“Will no one stay awake with me?”

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

I was so afraid.

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

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

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

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

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

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

Their love opens me even more.

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

What wondrous love is this…

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

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

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

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

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

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

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

 

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.

Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

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I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.

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Fear of Failure

Before I start this week’s reflection, I would like to thank all of you for your kind words, thoughts and very considered advice after my last blog. Your willingness to walk with me as I roll along is often the best part of my day.

Last night, we watched the Tony awards. I love musical theater, and I like serious drama, so it should be no surprise that we decided to forgo Game of Thrones and Mad Men in favor of this giant, three-hour advertisement for one of the great joys of New York City. With all the revivals showcased last evening, it was a little bit surprising not to see a show by Stephen Sondheim represented. Of all Broadway composers, I think Sondheim is my favorite, and with the week that I have had, I found myself humming a tune from his show, A Little Night Music – “Every day a little death.” I know this sounds maudlin, but the song actually represents the antithesis of how I have wanted to live since my diagnosis with ALS.

Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.

Invariably, you cannot approach ALS without thinking, at least a little bit, about death. When I was first diagnosed, I thought about my death a great deal. Then, as I seemingly worked through each ALS challenge presented, it became less and less apparent that my death would be sooner rather than later. In many ways, I would acknowledge death’s presence, but only begrudgingly and only within the larger context of dis ease. But especially in the past week, as I have dealt with a physical pain that I have not known before, as I have dealt with the emotional pain of saying goodbye to my hand function, as I have dealt with the pain of realization that there really is no going back; death has entered into my conscious space, pushing out the comfort and teaching of dis ease, replacing it with the sparkling clarity only its presence can bring.

Don’t get me wrong, I am not looking to be relieved of life just yet, but the hopeful sense that I can do this and do it well has been replaced with the realistic sense that I will do this and perhaps not with the grace and hope I expect of myself. Such realization causes me to reflect, to ponder, to become introspective on the value of my life as it is now, as it was, and as it will be. And of course when you begin to question value, then you begin to superimpose success and failure into the interpretation of life that is and was. And believe it or not, it calls into question the way you are blessed or graced or forced to die.

How do you fail at death?

In the past, I have chosen to reflect on such questions by turning them aside and asking instead, how does one fail at life? By turning the question to a life question, it seemingly delimits dying’s impact. I think it’s a good way to think – that a good death is based on a good life. But there is a small scratchy voice that asks me if I am avoiding the question entirely by turning it on its ear. After all, unless you choose to take your life, it really does seem that the choices around death are few and far between. So the question of failing at death might seem to be illogical or even silly, yet I find myself asking how that might work.

I have no way of knowing how much time is left between today and the day that I will die, but I am aware that the chances of having one year, a little over one year, a year and a half, less than two years are very good. I know this based on physical symptoms and how quickly they have come on. I know this based on what mitigating factors are available to me and how developing systems for catastrophic disease management are skewed toward profit and not cure. I know this intuitively in the depths of my gut and my soul.

There is nothing like impending death to focus your thinking.

So today, I find myself in a strange position of feeling urgency to bring certain parts of life to fruition while at the same time recognizing a lack of physical strength for the task. Here is an example. From time to time I receive lovely personal comments from friends. Sometimes these comments are soul baring, graceful dances, wisps of ether or shocks of electricity as friends and loved ones struggle in their own versions of dis ease, seeking to share a further understanding of my plight through theirs. They share thinking that perhaps I might have a broader capacity of empathy for what they experience. They share to comfort and question the humanness of living. And the energy that it takes to respond is so great, the physical needs for written response are so beyond me, that I just don’t. This is not the way that I wish to be engaged with my friends. This is not the kind of friend I wish to be. It feels like I am projecting apathy about issues that are truly troubling for my friends. It feels like I am not offering the love and care that I feel. There is urgency to respond, and fatigue in the planning.

It feels like failure.

I suppose that nothing focuses this urgency like the upcoming birth of a granddaughter. What little she may know about me will be in the stories of her parents, of Ev and of course what she discovers on her own. So I have been plotting a presence in her life, yet questioning if it is possible to achieve. For example, I’m beginning to think about digitizing photographs of our family when her dad was just a boy. I’m wondering if I could write stories around these photographs that would help her to know how special her father is through her grandfather’s eyes. Such an offering is a gift that children love. They love to hear stories about their parents when their parents were young. They love to hear of the childhood adventures lived out before their time.

But you can see how the logistics will be tricky. I cannot place pictures or slides on a scanning tray. I will need help putting them in order. I will need to write carefully. Above all, I will need to be mindful of my new granddaughter’s ability to comprehend the stories that are being told. I won’t be there to mediate the scary parts. If I cannot get to this, it will feel like failure. If I do not leave something of myself as a gift for her, it will feel like a purposeless life. It will be the little death I have tried to avoid.

In the end, I suppose it is about the fact that a good death is so tied up in the future beyond the event. It is the translation of one childhood into another, of love projected well beyond the time it was given, of DNA beyond inheritance.

And I suspect there will be no Tony for the performance, although I’m hoping for a long run.

Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

Eventuality

In so many ways, it has been an “aha” week for me. As I complete my first month-and-a-little, post-work challenge, the struggle to find a rhythm, a personal harmonic in synchronous vibration with my disability’s fundamental tone—defined by dressing for ease and not for the job, more and more intimacy with personal care assistants, lunches with friends, longer naps than I ever thought possible, the need for more and more physical support–has been the true north of my journey. I say true north as my direction seems to have veered from the magnetic attraction of the destination, toward what is a much more real, more dis ease accommodating journey.

We humans love to describe life with the journey metaphor. And why not? The path is clear; birth, childhood, adolescence, adulthood, work, relational commitment, parenthood for some, empty nest, maybe grandparenthood, retirement, agedness, and off we go into the light. I may not have named all of the points or their exact order, but the birth – death existence is quite a trip, and one that we all face. The uniqueness of the journey is in the dash between our date of birth and eventual death. Each significant occasion that marks our lives, seemingly unique to us, can be generalized in broad paintbrush strokes to humanity’s experience. And each occasion is an opportunity for growth or calcification.

Life growth and death brittleness come in many guises. Each of us might know growth through our partners, our relationships, our families. But we might just as easily experience the ravages of a relationship gone bad or a partner without commitment. How many of us know the pain of family dynamics framed by substance abuse or addiction? Each of us can hope for health in our lives, but we also know with certainty that what lies ahead will be marked by dis ease through manner of ways the human body goes wrong. We hope for good jobs and are aware of the tenuous nature of employment. The journey is not easy or sequential. For some, it looks like a straight path while for others, life is defined by events that are out of our control, clear leaps and bounds from event to event. Thus while the dash looks like a straight line from birth to death, life’s eventualities belie the look.

I know that you know this. I am just saying it for me.

This week, I found a bit of peace. It came through a slight reframing, a deeper spiritual understanding of my own journey line toward the death that awaits me a whisper of time from now. And I realized that the core idea with which I left my working life, consisting of a list of things to do, accomplishments to be checked off day to day and week to week, was silly. I am not retiring at the age of 65 with a hope of 20 years ahead of me for travel and all of the things I haven’t done. I have not reached a pinnacle in my professional life that feels worthy of celebration and satisfaction. Ev and I will not be selling the home and moving to a desert island. Nor will I be devoting my leadership experience to serving on the board of some meaningful nonprofit. I’m not going to start training to compete in the 70 and older bracket of the Ironman. “My hands are tied, my body bruised, she’s got me with nothing to live for, and nothing left to lose;” Bono’s religious romantic tome to existence pretty well sums it up. It is harder and harder to communicate through my hands, my ALSFRS is down, I cannot bathe or dress myself, eating requires assistance, I tire easily. What was I thinking?

Sometimes, epiphanies are so quiet they scream.

None of us is granted such prescience as to know the exact moment of our ending until the moment happens. And there is my “aha.” I truly do not know how much time is left me in this wonderful life. I do know that I will die eventually. The epiphany moves me from a peace that waxes and wanes in its ALSness to a peace that waxes more and wanes a little less in its utter humanness. My problem has not been with an impossible concept of retirement, but more with the feelings of loss and grief at the lack of such possibility.

My problem has been me.

What I am trying to do, what this new realization seeks to teach me, is to recognize inevitable frameworks of eschatology. Tom Waits said it when he paraphrased the early Christian church, “Jesus gonna be here, He’s gonna be here soon.” It is not my place anymore to plan for an existence beyond the day, the hour, the very second of breath and life. Rather, it is enough to seek a good day no matter what.

Why didn’t I figure this out earlier?

One of the more interesting concepts to come out of late 19th and early 20th century anthropology is the so-called “cargo cult.” A cargo cult in its classic sense is when a pre-industrial population becomes aware of the availability of goods and services associated with industrial manufacturing societies, and seeks to attract those goods without the manufacturing culture required to make them. Often, this would be manifest in rituals such as building airstrips or docks even though the society owned no planes or seafaring ships. The cargo cult is useful for explaining some of the more bizarre behaviors we observe in the zigzag line of human existence. In an effort to bring the goods home, we come to believe that we can construct a plan for everything, accounting for every variable, smushing in every single experience that we think we deserve, usually within some ritual that becomes less and less tied to the actual facts our lives exhibit.

All my life, I have been waiting for the cargo.

It seems that no matter how clear the lesson, I still try to build my life like a runway to attract perfection, to exercise control in a way that results in the plane landing with all of the straight line journey items I could desire. You can name the journey as you like, but for me, it was leaving behind me the negatives, the things that didn’t work, the imperfections, the losses, by exercising the rituals of retirement so that the cargo would arrive.

This week I realized that I “retired” at the age of 85, not 65. That changes things. This week, I stopped waiting for the cargo to show up. This week, the steady progression of ALS, point after point, and the obvious tasks that are now beyond me, illuminated this new understanding. It is enough to have a good day, hour, minute, second. Therein is the rhythm I sought, the harmonic I needed.

And eventually the cargo actually arrives, and the journey ends with the perfect harmonic and a compelling rhythm wrapped up in melodic wonder.

Summer Whispers

I took a vacation – really, a staycation – spending the vast majority of my two weeks off at home. This was a very different experience for me, for even with last summer’s realization that ALS had the upper hand, I still tried to get us out of town and far away so work could not intrude (or at least I was too far away to do anything about its intrusions). Such hasn’t been the case this summer. At home, each morning I rolled into our den, opened up the computer and dared my work to get into the face of my time off. Admittedly, this lack of boundary was a subconscious recognition that ending my time as a working adult is now plainly in sight. Maybe secretly it was the desire to continue the engagement, even when I was supposed to be off. On the other hand, the new logistics of travel (mostly associated with bladder capacity and the need for a Hoyer lift), also dictated the appropriateness of a staycation this year. So this summer’s vacation has not been one of travel’s explorations, but discoveries of inner thoughts and feelings and realizations and hopes.

The algebraic formula for Summer 2012 clearly graphs as hills and valleys. One week, ALS is nothing more than just another life adventure. The next it is a cascading series of physical failures. Joy and sadness are constant companions on this roller coaster, heightening the experience of peaks and troughs. There are days where I look at my condition and think, “I’ve got to get on top of this. I need to do more to stay ahead.” There are other days where such thinking seems absolutely futile, a waste of energy, frittering away time on details wrongly focused. Like so many who play out the normal process of aging, I have realized what is to come. Like the few who have ALS, my epiphanies take on the urgency of too rapid physical loss–Bruce with ALS Version 3.0.

Apparently, all things must pass.

Whispers of the future of the work that I love–the future of my college, in context of the future of my University, in a time when the future of higher education in America is a mystery–loom large. It is a compelling call, one that I wish I could engage into the next iteration, and it is no small thing to admit that the needs of participation in the upcoming dialogue lie beyond my capability, my capacity, my energy. Like so many institutions, we are caught between the desire for excellence and the need for efficiency, making us a target like any other consumerist entity–eyed by robber barons, ripe for takeover to be chopped up for yield, ideal for new narratives about the virtues of competition by lean for-profit companies who build easy myths that they can do anything better, education as commodity, markets über alles. Effectiveness and efficiency are not mutually exclusive, but they have become diluted by bottom lines – profits are the final arbiter, conservative and liberal do not share common bonds, unlimited growth can be achieved, there will never be a clear definition of what is enough for the well lived life. Higher education carries with it a specific responsibility less and less clear in the minds of Americans, its role as the great equalizer now seriously questioned – sometimes for very good reasons and other times for reasons spurious at best.

Somewhere in the conversations we have deliberately or inadvertently forgotten how seductive ease is to human desire. Somehow the work of the mind has become divorced from the work of the hands. Somehow the idea that ideas are not practical and practicality is the greatest measurement of value has wormed its way into our collective psyche. It is our national version of dis ease, the artificial exclusion of intellectual from artisanal, thinking from doing, performance from preparation, theory from practice—these deliberate dichotomies valued by the pundits and politicos so that their efforts to make these concepts understood below a fifth grade level can divide us, human from human, so they can scavenge the flotsam and jetsam of our confusion, while we remain disheartened, dis eased in our own space. Every good athlete and musician knows the intersection between mental preparation and physical performance. Every good teacher knows you must not make things too easy. Ease is best for propaganda, not education, and once people expect ease, they become less discerning, less creative, less human. It is a question of balance, and the balance right now is not fair.

ALS tears down all old frameworks, dis ease insists upon adaptation. Summer reflection is more than the context of work. Family whispers.

They are my true loves, and my placement in their midst as self-appointed paterfamilias no longer feels easy. Distinct markers redefining the evolving me are clearer. There was a time when I defined myself as the safety net for my sons, my partner Ev. That is no longer possible for I have neither the resources nor the energy for such backup. Our knowledge of each other shifts, crawling into our superficial awareness or hanging back just out of reach of conscious discernment. But we know.

A man who cannot dress himself is a care-receiver, not a caregiver. A man who each day must check the proverbial gas tank, mentally running through lists of new or potential physical loss– increasing reliance on others for the most basic needs, seeking safe havens that do not test corporeal or psychological energy—must leave behind old assumptions based in past ability. All of this is more and more obvious, barely spoken, gaining the traction of consciousness. And what remains is still me –love and history, good and bad, humor and sadness, musician and athlete, intellect and artisan, foolish novice and wise veteran– none of this is lost. It remains a powerful binding force holding me, us together. We persist but for how long? Will I see the paths my children have chosen, flowering into the human beings I only imagined at their births? Will I see their children, carrying on in a world more globally robust yet less locally connected? Will I see my 57th or 58th or 60th birthdays? Will all of this so totally break us that we end up grim and greyed by the experience? Will we continue to meet the losses with new capacity for grace?

Summer vacation is a treacherous time, especially when time lies heavy on your hands.

In Minnesota, August brings regret and anticipation. We look back on the heat of the summer with our big summer plans and sultry anticipation of the good times to come, and we regret that we did not fulfill what seemed so possible in June. But we also look forward to autumn nights, chilly and crisp and cold, knowing that there still may be one or two 90 degree days left, enough to grab another inch of summer to warm the heart during the gray-blue cold ahead, appreciative of the stark insights winter begets. Reflection and discernment are not exclusive to summer vacation; they just focus into warm streams of consciousness at that time. There will be more realization to come, for dis ease insists upon it.

And I want to be there, if only it will have me.