Just One More Time

Not that the phenomenon is unique, but in Minnesota you can bet that you have been fully assimilated into the culture when you participate in the “Minnesota Goodbye,”a highly ritualized, almost liturgical set of behaviors. The Minnesota Goodbye is a cultural artifact with its probable roots deeply held in the Germanic, Scandinavian, Southeast Asian and sub-Saharan African populations, not to mention the Irish and the English, that so richly spice our little corner of these United States. Combine cultural roots with a weather pattern that does not encourage going outside for at least six months of the calendar year, and you can probably begin to understand how the Minnesota Goodbye became the well-developed ritual that it is, and why it has taken on an almost religious function in our social practice here on the frozen tundra.

The Minnesota Goodbye occurs when visitors indicate they are ready to go. The host carefully walks them to the door where host and guests stand and chat as if the evening is young and they have not been together for the past three or four hours. Often, the most important exchange of information at a social occasion takes place during the Minnesota Goodbye, for it is in this space where host and guest are assured of one on one time together. Frequently punctuated by the phrase, “let me say just one more thing and then we will call it a night,” the Minnesota Goodbye has been known to last for upwards and beyond an hour in length and for those who are not accustomed to its rituals, it can seem almost irritating in the breadth of its timing and depth of its sharing. Those of us who are not native to Minnesota find ourselves asking why we did not engage in such conversation during the evening’s socializing, or at least why we held such an important discussion until we were at the door. When I first came to Minnesota, I found myself asking such questions (not to my guests of course) of myself and my wife. But eventually as we shed our otherworldliness and cloaked ourselves in the cultural mores of Minnesotans, we became accustomed to the rituals associated with leaving, and now participating in the Minnesota Goodbye seems so normal that to not participate in its rituals would leave us feeling empty, as if our visits were superficial. And we have come to appreciate the Minnesota Goodbye for its utility in ensuring that what must be communicated between good friends is actually shared, that what should be said does not remain unspoken, that a silent chasm between good friends cannot exist. The Minnesota Goodbye is an assurance that just one more thing cannot be left out of the evening’s visit or the joy that comes with friendship’s deep communication.

Medical practice can be very much like the Minnesota Goodbye.

No doctor wishes to leave any stone unturned in the treatment of her patients. Good doctors especially want to make sure that they have considered all relevant variables and possibilities as they construct a recommendation for appropriate treatment. It is the medical version of the Minnesota Goodbye so that just one more thing is often the rule and not the exception. Just one more thing has tremendous ramifications for patients. In the moment of medical crisis it can offer reassurance that all possibilities will be considered. Conversely, in the moment of deep peace, just one more thing can create disruption where it may not be necessary.

I know this firsthand.

My treatment up to this point is framed by the need for managing the ever increasing demands of my symptoms, even as they become more and more difficult to manage. For example, in July, I began to experience difficulties in swallowing. With the help of my neurologist, I worked through the pros and cons of having a feeding tube placed, in case swallowing became so difficult that I would not be able to eat. At that time, I decided that the risks associated with the operation – sedation, being in a hospital, possible side effects of a surgical procedure no matter how simple a surgeon felt it to be – far outweighed the possible good of the feeding tube, and thus I determined that the placement of a feeding tube was not an appropriate treatment for me at the time.

A number of my friends and doctors, extremely well-meaning in their probity, have asked me the question, “Why did you not place a feeding tube early on in your progression?” It is a good question and probably more indicative of what we have learned about ALS in the four years since my diagnosis than on any strong personal feelings about feeding tubes. When I was diagnosed, the focus question was on whether to place a feeding tube or not. Now, many neurologists who treat ALS are more focused on the question of whether one would like to keep their nutrition up for as long as possible, citing the fact that weight loss is highly correlated with lack of survival. Upon receiving an affirmative answer to the question of nutrition, only then do they introduce the question of the feeding tube. It isn’t so much that we didn’t know the importance of nutrition, but the fact is that four years ago, the medical approach focused more on the question of a feeding tube almost as if it was separate from the question of nutrition. Since I had experienced no difficulty swallowing, even up through January of this year, I did not wish to submit to one more procedure that would require care and attention by another person when it seemed that it was unnecessary. Hence, up until July when I was able to swallow without any concern, the placement seemed superfluous, and after July when I was able to analyze the inherent risks, my decision remained firm.

I have likened ALS to a train on the tracks, seemingly in slow motion, unable to veer left or right, coming straight at me as I am stalled in this body and am unable to leave the rails.I am highly aware that with ALS, the final cause of death will probably be a combination of lack of nutrition due to eating difficulties and the buildup of carbon dioxide due to breathing difficulties, more likely the effects of the latter. At this point in time when I need to see my respiratory therapist once a month to bump up the BiPAP’s airflow and exhalation, when I need to see my hospice nurse once a week just to bump up my symptom management, when the conversations that Ev and I have are liberally salted with discussion of just how we desire the end to go, I am at peace with the life I have been given, accepting of the death with which I am gifted, and grateful for every day that I still awaken. It is a good space for a person to spend their final months. And I think that my physicians, my healers, my beloved doctors and nurses and therapists are okay with me being in this privileged space.

And in this carefully constructed space, where we are at peace, just one more thing knocked on our door and turned our world upside down just one more time.

The best doctors leave no stone unturned. A dear friend of mine, a neurologist and expert, suggested I look at an alternative way to place a feeding tube. The logic was impeccable. Why should you have to spend so much energy and time on eating when the quality of your meal time could be focused on taste while nutrition could be taken through a feeding tube? And I had to admit that such a possibility actually sounded pretty good. We discussed a procedure that could be done with me awake and on BiPAP during the entire time. Yes, it would mean I would have to give up my Do Not Resuscitate and Do Not Intubate orders, for what surgeon would want to operate under such circumstances, but the idea of spending less physical time and especially less psychological time on eating was appealing. And, as I played out the possibilities with my family, I thoughts that I could see them lighting up with hope that such a procedure might result in longer survival, a better quality of life. But as I considered the downside to the operation, I had to be honest that with the intubation might come the need to utilize invasive ventilation, something that early on I decided I did not want to consider for my treatment. So, another way to look at this would be higher quality of life versus dying during the operation or a day or two after due to other complications.

I know that these decisions are extremely personal, and that what seems to fit the type of life that I wish to lead could be totally inappropriate for another facing the exact same decisions. I only share this to illustrate how easy just one more thing can suddenly raise itself into your world, your consciousness, your deep analysis and consideration. And that is exactly what happened. The relative peace and calm that we had worked so hard to establish was suddenly disrupted, turned on its ear. and everything that I had imagined as to what constituted a good death was thrown up into the air as I considered the procedure.

Here is the point. Whether you think such disruptions are for the better or worse, the fact is that even when you believe everything is worked out, it is not. And the process of my working through the feeding tube decision required consultation with two different neurologists, two different nurses, a trusted friend at the ALS Association, both of my sons and my beloved wife, and finally our hospice providers. And even though I perceived a hopeful outcome, the 10 days spent in attempting to make a well considered decision also raised feelings of disruption, resentment, irrational hope, and even despair for my family and friends, for me especially, as all of us considered the ramifications of the decision that had presented itself like a Minnesota Goodbye careening out of control.

And what finally led me to decide not to do the procedure? Two different pieces of information surfaced from my two dear neurologists – one was that even if the procedure worked it would not in most probability, lengthen my life; two was that this particular type of feeding tube was susceptible to needing replacement more often than I would probably find acceptable. But the piece of information that really cinched the decision was this: I would have to go off hospice. As I considered the ramifications, I realized how dependent we had become on our hospice care providers for the stability of schedule and environment that they gave us. We had established meaningful routines again, we knew who to call and for what, and we really liked the people with whom we were working as they seemed to understand our goals for peace and dignity and joy in the end. And in the end, it was the possibility of losing the human qualities that hospice had brought to this complicated process of dying, that led us to utterly and completely reject both the hopeful possibilities and the frightening counter indications of placing a feeding tube.

Please understand that there is no blame or bad feeling here. I just think it is highly illustrative of how easy the turn of one more stone can shift the foundation of the carefully constructed life. When you are dying, that careful construction is remarkably helpful. And while it is always good to consider the treatment possibilities that do exist, it is just as important to consider how such treatments can disrupt and affect quality of life. Consider how so many of my brothers and sisters in ALS reach beyond their own capacity for something, anything that might offer them a little more life. This extremely human desire makes all of us susceptible to the seduction that comes with the medical version of just one more thing. Who can blame us? So many are young with so much possibility ahead, cruelly robbed by ALS, so that the idea of just one more thing is very seductive. But if you stop and think about it, this susceptibility is more a statement of the value we place on the unknown future, than the gratitude we feel for a past well lived. I know people in their eighties who are having difficulty negotiating their impending deaths. Just one more thing appeals highly two and a irrational future when you cannot find peace with the inevitable present.

Yet, as right and good as I feel with the decisions I have made, with the space I am given as I wend my way toward death, I can still feel the pull of the Minnesota Goodbye. To remain in this peaceful, beautiful space, requires a concentrated effort, a projection of gratitude and acceptance, and the conscious receipt of a peace that passes all understanding. I have come to the point where just one more thing is fine for executing the ritual of the Minnesota Goodbye, but for realizing a life well lived,  just one more thing interrupts the stream of conscious love I am becoming, as I tumble into the river where all life finally ends and continues to its source.

And if I change my mind, I’ll make sure I tell you as we walk toward the door and bid each other adieu.

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Christmas Letter in June

Dear friends,

I have not written a blog entry for two months, the longest period of time since I began writing in March 2011. Just as writing is tremendously informative, not writing can also speak in waves, and so I thought I had better give an update just so you wouldn’t think I had died. As I think you are aware, I have continued to write as a way of keeping my wonderful network of friends updated as to how things are going, how ALS is treating me, how my family is doing. And even now I want to give you that kind of update. But as you know, writing for me has also been deeply therapeutic, and that kind of healing comes with a cost. It takes a great till of energy to turn the everyday meaning of something so ordinary as the progression a disease on its head. The ability to do so has been one of the keys to what I believe could have been devastating. But I have reached the point in my progression where I only have so much energy, and I have reached a place in my thinking where I feel the need to summarize, to look back on this opus and to make sense of what it might mean more fully.

So I guess my first piece of news is that in collaboration with the very talented Cathy Wurzer, we have been offered a book contract based in these writings and the 25 stories that she has broadcast on Minnesota Public Radio. My plan is to finish the book this summer and then return to blogging. There are possibilities in such a plan, but I also know that the stars must align just so, ethers must conflagrate just so, and I must conserve precious energy that is so fleeting in order to realize this project. This is easier said than done.

My care needs have increased to the point where I am never alone. For the past semester, Evelyn has worked a 75% contract. This was in response to the fact that in the fall, she fell ill, contracted pneumonia, and never really could shake being sick. Her district very compassionately worked with us to find another teacher with whom she could split her responsibilities. The needs of a full-time job, coupled with the responsibilities of being a full-time caretaker can really wear a person out, and we both agree she is better with reduced teaching load. And of course, I will take every minute that I can get with her so I am the better for it as well. I continue to be well cared for by a combination of personal care assistants and volunteer friends, who also remove some burden from Evelyn. Their commitment and skillful care combined with the fact that we genuinely like each other makes this loss of independence much easier to handle.

Even though I am retired on disability, I have continued to think academically. For the past year, my dear friend Ernestine Enomoto and I have been working on a second addition of our 2007 leadership ethics book, Leading through the Quagmire…. With the help of our friends Deb and Sharon, we have greatly expanded the book and now await its publication, hopefully next month under a new title, Leading Ethically in Schools and Other Organizations. It was wonderful to work with Ernestine again, and I received tremendous support from my friend Jeanine who became my hands as I sought to fulfill my responsibility to the writing. Adding the chapters that Deb and Sharon penned was a real bonus.

After my wheelchair accident in April, the realization that I am down to one usable knuckle for driving the chair has become painfully obvious. I am now using what is known as a micro driver for my chair, and this has returned some driving ability to me. Currently there are two people who are comfortable using the attendant control on my wheelchair, but we are hoping that number will increase in the near future. In the meantime, we now have a manual chair as a supplement for those who are uncomfortable with operating my power wheelchair, and hopefully this will allow me to get out a little more.

My progression has now reached a point where I must take great care when I eat. A choking incident that took a very long time to clear was just the latest signal as to just how I must continue to embrace ALS. At the same time, my ability to speak with presence has finally dropped away. I speak softly, become tired with speech, yet I am totally dependent on speech recognition for writing and interface with my environment. In the next couple of weeks, I will again try to work with eye gaze technology. Eye gaze requires even more patience than speech recognition in order to make it work. Those who have mastered it have my deepest respect. I see it at first as a way to save my voice. For example, if I can turn the pages of the current book I am reading using this technology, it is one less use of the voice. If I can read the New York Times with this technology, it is one less stressor, and I can conserve my vocal use for writing and speaking.

To better support my breathing, I am now using BiPAP at night. So far, it is going well. It leaves me with a little bit more energy, and I must admit that the feeling of full breath is very pleasant. Of course, my competitive nature hates the fact that I have just lost four points on the ALS Functional Rating Scale, but I find solace in quoting Kurt Vonnegut. “So it goes.” And I have to say that when I combine the BiPAP with the diaphragmatic pacing system, the feeling of breath is wonderful.

I look at the news above and realize that for the able-bodied, such news might seem just a little horrifying. Would you be reassured to know that once I made the decision to embrace my condition, to learn its lessons, to cry when it seemed appropriate, and to laugh whenever I could, the horror dissipated? I recognize just how lucky I am. In spite of the fact that I know how this ends and that it ends much sooner than I would have liked, I have been granted great gifts, phenomenal love, faith that has not left me, a family that only cares for me more and more, and of course the gift of finding a one true love. All of this is to say that like life, ALS is far more complicated than most of us are willing to see.

I continue to practice yoga, and now try to pen a meditation about my practice as a person with disabilities once a week. This is writing to which I commit, because it helps me in the discipline that yoga has brought to my life. I will never be able to fully or adequately thank my teachers at Mind Body Solutions, but they have assured me that gratitude flows two ways. In addition, I have developed deep friendships so unlooked for yet so soul feeding. One of the lessons of ALS is that if you wish to live fully until you die, you have no time to waste in meaningless conversation. You have to get to the dance right away. I am remarkably blessed in this regard, and it has helped me to accept the choices that dis ease foists upon me. I have been granted a richness in life for which there is no complaint. I accept what I have been given, and I am grateful for it.

I probably will not be writing much in the blog for the next couple of months. That being said, I can see where I might require advice as I write body and soul in a book. At the very least, I hope you will grant me and my family your best wishes and know how much it means to me that you choose to spend your precious time with me in this life spiral.

It is the greatest privilege.

Yours in ALS,

Bruce

Maundy Thursday, From the Silence

I was privileged to offer the following last Sunday.

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

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

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

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

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

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

 

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

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

“Will no one stay awake with me?”

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

I was so afraid.

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

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

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

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

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

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

Their love opens me even more.

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

What wondrous love is this…

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

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

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

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

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

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

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

 

Falling 3.0

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

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

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

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

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

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

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

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

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

I am so thankful.

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

And here I am.

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

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

Beneficence

If you have traveled with me for any time at all during the last three years, you know that I consider myself to be blessed. I don’t use the term lightly, for I know that from the outside looking in, ALS does not look like a blessing, even with the most creative of interpretations. And I don’t mean to diminish the daily challenges of living with a body that is breaking down minute by minute, hour by hour, little by little, small to big to massive to the point where nothing functions and all things physical must come from the beneficence of another person. But if you have traveled with me for any time at all, you know my blessings, the growth and learning they have fostered, and you know their source.

And you know, the lessons have not come easily.

In the first week after my diagnosis, I felt that the only space available for pain was mine and mine alone. It seemed logical and protective, but as I began to share my new status, two realizations became clear. ALS would be a very lonely affair if my only source of of energy would of necessity, have to come from within. As I felt the physical fatigue of ALS growing, as my energy waned, as I felt the strength of a life defined by physical activity leaking into a universe of stillness, as weakness of body threatened to define personhood, it was easy to believe that this new reality might frame the parameters of my soul. I was frightened. Within the first week of my new life in ALS, I came to understand that as I shared my new normal, if there was no place in my heart for the pain and weakness of others, then my own space would become smaller and smaller – angry and frustrated and locked in. I learned as I told my story, others would tell theirs. ALS granted us permission to share disease of body and spirit in a space that was strength and energy and synergy, huge and wide and oxygenated in colors strong and bold, transcending the weak and angry pastels with which our diseases sought to paint us.

The realization hit me like a bag of bricks.

For many years, I taught leadership and ethics. What I tried to teach was that what often looked like vulnerability was actually great strength. I tried to teach that no one person could lead alone. I tried to teach that humans need each other, and this often means we have to reconcile the different meanings we ascribe to singular phenomena. I tried to teach how to pay attention, keen and analytical attention to the context of any situation. But I also tried to teach that context could imprison the imagination, leaving only stale and tried but untrue methods for dealing with the situation at hand. In many ways, ALS took what I tried to teach and infused it 100 times over.

In the infusion is transcendence – vulnerable, collective, reconciling, attentive.

Saturday, my 58th birthday, I was given the gift of attending a lecture by the Dalai Lama. I have never heard him live. The gift of being in the room with such kind energy, such humanity, such loving presence, such wisdom was a gift of such anticipation that I could hardly contain myself, and yet I was also haunted by a feeling, fear, almost anxiety. What if my body would not allow me to go? What if my hands would not drive the wheelchair, or the ride into Minneapolis would be too much, or the weather too cold, or the snow impassible for a person like me? I began to close down the anticipatory space into a fear of losing something that I had yet to even experience.

And here is the first lesson.

It takes a lot of energy for me to go anywhere, and left to my own devices, my own energy, my own abilities, I probably would not have gone. My family rallied around me, driving both the van and my chair, the six of us together and me feeling the love. My friend created a path of no resistance, placing me on the front row, making the lines to get in and security checks melt away. I was so glad to be there, and the Dalai Lama was wonderful and wise and considered and realistic; his answer to the question, “In one word, describe the world today,” stirred my heart, I so get it. “COMPLICATED!” he said with hardly a pause. He was invitational and imaginative in both experience and vision, and he asked us to raise our humanity to the very best that we can.

But there is more.

At the end of the question-and-answer, his Holiness was asked if he would bless us. In reply, he stated that as a Buddhist he was skeptical about blessings, for blessings come from individual action and motivation. It was a beautiful answer, underscoring the message that he had just delivered – peace and human love begin with the individual person, and while I think we were disappointed not to receive a blessing, his answer was a call to beneficence and sufficed for everyone in the room. And then, he did something extraordinary. Instead of walking off the stage to his right as he was supposed to do, he stepped with purpose and direction to his left, holding his hand up to shield his eyes from the stage lights, pointing in my general direction and looking as if he wanted to greet an old friend. And he came to the edge of the stage in front of me, and when I realized he was coming to greet me, I began to cry. One of the Tibetan musicians behind me gave my daughter-in-law a scarf and he took the scarf and held it to his forehead and then said, “Meanwhile, my blessing,” and he gave it to me. Namaste. I sobbed and my family sobbed in the beauty and the blessing, and in that moment it hit me, again like a bag of bricks, that a blessing does not stop in its bestowing.

I hope this does not sound pretentious.

I can hardly speak about the moment, even now, many days later, without crying. You see, in my tears and the tears of my family the blessing was reciprocated. We received his blessing, and as we cried together, we saw our place in the universe and blessed the humanity to which we had been invited. It was as if every lesson I have sought to teach, that ALS has sought to teach me was infused 100 times more. And his blessing was a message, that all blessing comes from intentional action, and cannot be conserved if it is to remain a blessing. To be a blessing it must be paid forward 100 and 100 and 100 times over, so that each blessing invites us to further realize the beauty and complexity and messiness of our sprawling humanity. My teaching is a miniscule peek, and ALS grants a fleeting glimpse to this lesson. Dis ease is the lesson lived. And unlooked for, yet transcendent, tears framed a moment where meaning continues to deepen in its own time and space toward a more loving humanity.

Blessings.

From the Silence

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

I am almost always at least a little bit tired.

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

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

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

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

And I am thankful.

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

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

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

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

Love Notes from the Universe

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

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

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

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

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

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

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

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

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

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

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

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

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

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