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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What have you done for me lately?

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

What have you done for me lately?

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

And we are not the only ones.

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

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

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

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

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

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

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

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

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

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

The Elephant 2.0

I live in a condo where every available space is maximized. When your life is framed by dis ease, you need lots of area to turn around, to fall and get up, to receive uninvited guests and invited love. When your life is framed by dis ease, unless you consciously take charge of the chaos, there are spirits climbing on the walls, unseen by all except you, the floor is a constant jumble – uneven and rolling like the hills of southern Indiana, yet only perceptible to you. When your life is framed by dis ease, the decisions about what you can handle, what you can take, what adds meaning and what subtracts life force take on significance that makes the day to day existence of ALS seem like a vacation. Such decisions are elephants in the room, invisible and waiting for someone to grant them permission to become visible, to acknowledge their presence, to speak their truths no matter how painful. Elephants almost always appear when suffering is present, and I am to blame for the elephants I can see. By not blogging for the past four months, there are so many elephants that have wheedled and cajoled, quietly appeared or loudly announced their presence, that they have taken over every room, every seat, every open space, and I cannot help but be overwhelmed by their sheer number.

Not since my diagnosis have I gone this long without blogging.

I have been very busy writing, and our book, We Know How This Ends, is in its final stages before production. But I have to admit that in paying attention to the larger picture painted by writing a book, submitting, resubmitting, and resubmitting again drafts for editing, my viewpoint has out of necessity been at the 30,000 foot level. From up here, you can see all of the elephants, but the details are not specific. It isn’t a bad place to hang out, but it does not lend itself well to the daily processing that dis ease demands, especially if you are trying to stay in that space between grief and fear, pleasant memory and the anguished unknown, past meaning and future possibility. And, in spite of the incredible support of my co-author Cathy Wurzer, the many small yet largely significant physical changes I have gone through in the past four months are piled up on my lack of interpretation, leaving me much more susceptible to tortured feelings and harmful vulnerability. Really, you think I write to you to keep you informed? I am much more selfish than that.

I need the therapy of blogging; there are elephants in the room.

In early July, I began using BiPAP for breathing support. BiPAP is a more active version of the CPAP that many people use for sleep apnea. I must have been starved for air, because within 10 days I was using BiPAP almost 24/ 7. There are two ways to use this machine. It has its own stand and a humidity element that keeps the air warm and moist as I breathe. This is my preferred manner for using BiPAP. You can imagine that if you had wind blowing up your nostrils, your poor little nose would get sore both outside and in. The humidity helps but isn’t quite enough. My BiPAP machine is also on batteries that can be tied into my wheelchair. This allows me to make transfers or to leave the condo with the BiPAP machine functioning sans humidity. It is OK for a little while, and it keeps me from having breathing events when I transfer from one place to another.

With a long BiPAP hose hanging from my face, I joke with my friends that I am the proverbial elephant in the room, and unbeknownst to them, I am.

The air hose that comes off the machine enters through nasal pillows held by a head strap against my nose. The advantage of using the nasal pillow interface is that I can talk. Other ALS friends of mine that use a full face mask cannot talk with their masks on. But thankfully for me, and probably not so thankfully for my friends, I am able to speak while wearing my BiPAP mask. Unfortunately, BiPAP makes me sound like I have a terrible head cold. Words like “nine” come out as “died,”and “mom” comes out as “Bob.”  I tell my friends that just as I need to concentrate on my pronunciation, they have to put on their BiPAP ears so that we can communicate with some semblance of understanding.

Like any good elephant, I ask people who have not seen me on BiPAP before, if they think it makes me look fat.

At first, I tried to use the BiPAP with my diaphragmatic pacing system. Unfortunately, the DPS is slightly out of sync with the BiPAP. Thus, I was required to try to consciously synchronize the kick of the DPS with the breath of the BiPAP, and for a while, I was able to do it. However, over time my strength to control the synchronization has waned and the DPS has become quite painful, so I no longer use it. I have to admit that I feel a little bit guilty about that. But then I remind myself that in reality, the DPS for ALS is a clinical trial, and until we gain a great deal more evidence that can be meta-analyzed, we just will not have the requisite knowledge for best use and application. I have learned the hard way that one of the great challenges for treating ALS is that everything is on the front lines of knowledge. Just when we think we have figured something out, new knowledge emerges that ironically enhances what we already know while at the same time putting us back to square one in what we understand.

If you listen carefully, you can hear another elephant trumpeting its song in my dis ease life.

The minute I remove the BiPAP mask, my voice becomes so soft that it is barely discernible. The amount of air that I can move through my system without mechanical support is miniscule at best. I am literally out of breath without this machine. Not having the strength to synchronize the DPS and the BiPAP, barely moving any air in and out without support, and other losses are all indicative of dis ease and its handmaiden ALS, especially in terms of where things are in the elegant progression of this remarkable disease. From here on out, life is only too short for me.

So many elephants, so little time.

The greatest elephant in the room is the worry I carry about what happens to my beloved family and my loving friends after I am gone. I know full well that they will keep on keeping on, that their lives will be joyful, and that the sadness that we feel together now will dissipate into a lovely longing for days gone by. But I cannot help but worry. What if all that I have learned and sought to pass on is for naught? What if they forget how to remember my love for them? I know these are small concerns considering all of the adjustments ahead of them. I just want them to deeply know how much I love them and how much my life was bettered by being in their presence. I want them to know how healthy I feel in spite of ALS. I want them to know that because of them, I knew grace.

And in spite of the visual evidence, nose extension and quiet voice, the grace that I feel is the real elephant in the room, gently waiting to take me home.

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

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.

The Ghost of Christmas Past

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

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

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

ALS can be quite the killjoy.

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

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

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

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

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

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

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

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

Endgames

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

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

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

The loss is easier to share than the litany.

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

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

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

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

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

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

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

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

And of course, there is Hypatia – pure granddaughter.

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

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