Happy New Year!  My update is long overdue. Judging by the reaction of some, to Bruce’s last blog entry, I feel I need to clarify how we are doing right now.

One of Bruce’s all-time favorite movies is MONTY PYTHON AND THE HOLY GRAIL.  There is the memorable scene in the plague-ridden town where they cry, “Bring out your dead!  Bring out your dead! ” One old man carried out on a stretcher says, “But I’m not dead yet!”  That’s Bruce.

It is hard to hear the dreaded ‘H’ word – the H, of course, being Hospice. In the United States, we don’t do hospice well.  We wait far too long to take advantage of the hospice benefit.  Sometimes, the person who is dying is not even aware they are in hospice, because hospice wasn’t called in until the patient was in a coma.  We hear “Hospice” and we all jump to the conclusion that death is imminent – a matter of a few days.

Bruce is still here and still very much alive.

Hospice is a philosophy. The main idea is that when a person is within 6 months or so of death, they ought to be made as comfortable as possible so that they can wrap up their life, say the things they want to say,do the things they most enjoy doing, and be able to say their goodbyes to the people they love in a planful way.

We began hospice in mid-September and often wonder why we didn’t start sooner.  Our lives have greatly improved since beginning hospice.

There are the little things, like not having to remember to refill prescriptions and figure out the logistics in order to pick them up. Hospice delivers all our meds and supplies to our door and pays for them as well.

No longer do I need to worry about how on earth I am going to get Bruce to a clinic to check a possible ear infection, or a skin rash or a sinus infection.  Hospice sends out a nurse practitioner to check on him in our living room.

Weekly visits with our  lovely hospice nurse allow us to ask worrisome questions, draw on a wide variety of medical expertise and specialties, and then decide on a course of action as a team.

Instead of carrying the whole heavy burden of Bruce’s ALS by myself, I suddenly have an entire caring team to help ease my load.  We have wonderful aides who come and shower Bruce, 2 fabulous masseuses who soothe his pain with healing massage, grief counselors and a social worker who check on my emotional and physical health, as well as the well-being of our sons and daughters-in-love.  We feel so supported!

And yet………. Death is here, in the corner of the room.  Death is patient; it isn’t Bruce’s time – yet.  Once in a while, Death nods his head, gives us a wink – as if to let us know, “Hey, I’m in no hurry. Take your time.  I don’t mind waiting.  I’ve got a whole briefcase full of cases I can go through while I’m waiting for you, Bruce.”

We welcome your loving messages. Better to say the things you need to say now, when Bruce can answer you back.  I am creating a scrapbook of your loving notes to share with my kids, their wives and my grand-kids (born and those not yet a twinkle in someone’s eye).  If you haven’t written a “Dear Hypatia” note yet with your memories and impressions of Grandpa Bruce, please do so now.

Bruce is still very much involved in life.  His book, WE KNOW HOW THIS ENDS:  Living while Dying is available for pre-order from the University of Minnesota Press as well as on Amazon.com.  Bruce is involved in plans for launching the book and for creating an ‘enhanced E-book” version as well.

He tires more easily these days and is entirely dependent upon his Trilogy machine to help him breathe. As his muscles waste, his joint pain increases so he is taking more medication for pain these days.  But Bruce enjoys visits with friends and colleagues. Please call and arrange a visit. Just watch for signs that he is tiring.

Thank you for all your prayers,  positive thoughts and caring messages as we walk together towards the Next Big Adventure.

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Happy Complicated New Year!

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

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

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

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

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

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

Now, I am a believer.

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

This is why we engaged hospice care.

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

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

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

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

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

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

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

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


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.

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,


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.”