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.