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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18 thoughts on “Just One More Time

  1. Dr Bruce, every time I read your fundamentally moving cerebral postings, I am again reminded of how God provides joy in our suffering. Thank you for sharing your journey to the meeting of our Lord and Saviour. Be assured that many are praying for you and your family, including me♥️

  2. Bruce:
    Indeed a life well lived…and lived…and lived!
    Your courage, spirit and wisdom remind all of us that we too will join you in the “after”, some sooner, some later…but all of us.
    God bless you and your family. May you be blessed with much peace.
    Patty

  3. Dear Bruce, your legacy is inspiring, your insights are so raw and genuine, you write with grace and elegance. All of us are loyal soldiers in your army. You and Ev have created so much beauty in the world. Thank you for sharing bits and pieces of yourself with us.

  4. You are compassionate, intelligent, loving and reasoned, Bruce. What a master class in living you present each time you write! Blessings of peace to both you and Ev.

  5. Oh Bruce and Eve!
    Beautiful writing! Oh your words touch many strings On my heart! You are brave to allow the boat that was rocking one way to be spun as you allowed a new idea of treatment to stir. Thank you for the gracious way you expressed your feelings! Big MN hug to both of you! You are a blessing!

  6. When we parted last week, I felt the strong tug of the Minnesota Goodbye upon my sleeve. I felt compelled to tell you that I did not wish to leave you or yours at all. I and Kathy could have basked in the love of true family for quite some time, probably to the point of annoying you. However the responsibility of being in Indiana for the “others” had already weighed in I was moved to return.
    We are with you always. In thought and prayer and hope and even suffering. That pause at the door to Minnesota is so hard, so hard. I wish I could stay always.

  7. Dearest Bruce,
    Your life is incredibly beautiful as your dying is incredibly spirited in peace and grace.
    I am so thankful to you Bruce, for sharing your vast insights into the realities of life and love and life with ALS. I bow to your wit and bluntness above all!
    You inspire me to care more deeply about how I might share my talents with others, while living with this dis…ease for the past couple of years. I too am 58, an artist and past teacher.
    In peace, light, love and gratitude, till we meet again my friend,
    Mary
    P.S. Happy Thanksgiving to you and yours! You are in my heart.

  8. I read your email this morning as I prepare for my moms wake today, she was 67 and was diagnosed with ALS 18 months ago. Your comparison between ALS and a train coming head on is perfect! She had a feeding gtube placed in March and by July was fully dependent on it. The last few days she wore her bipap much much more. She passed away peacefully in her sleep.
    Continue to fight your fight! I will keep you in my prayers and whenever you get to heaven please give my mom a hug for me.

  9. Oh Bruce. There are no words. Except “love.” I love you for helping us all live and learn and grow and be better, more mindful, humans.

  10. Thank you for your powerful words. In my work I worry that caring and well intentioned healthcare professionals shield people from “one last things”. They have so much on their plate, they are tired, they seem at peace where they are at…. The choice to consider one last thing should be with the person and the loved ones close to her or him. It is not a burden, it is an opportunity, although certainly a challenging one. And what you so eloquently stated, each person can say “yes” or “no” or “not now”. It is our task as caring professionals to honor and support choices, indeed to celebrate choices and the strength and wisdom they demonstrate. You made a courageous and thoughtful choice. Thank you for encouraging others to do the same. May healthcare providers honor and support patients in making informed decisions. Endless blessings to you Bruce and your family. Judy

  11. Dear Bruce, Thank you for your post. I hadn’t thought about “The Long goodbye” for quite some time. It was alive and well in my family as long as I can remember and, long before I was married. My dad spent the time waiting and tapping his foot, until my mother (the talker) was ready to leave, as does Don. But I am a firm believer that one should never just say “Goodbye” and leave anything unsaid. We are looking forward to seeing you and the rest of the family. Much love, Alice

  12. Dear Bruce,
    I am again in awe of your beautiful words and thoughts, and feel so grateful that I am able to share in your journey even from afar. So often, we are not aware of the ramifications of what we say, or what happens once people leave the office. Thank you for this glimpse, and for enlightening all of us during your journey.
    Blessings to you and your family,
    Chris Wesely

  13. You gift us with all of your thoughts. I wish that my “Minnesota goodbye” for 5 and a half years with my husband with his ALS could have been as thoughtful and as spiritual. I fully understand why you would not want to go off hospice, such a comforting and reassuring experience. May you and all your loved ones be at peace.

  14. Dear Bruce,
    I’ve been listening to your interviews on MPR about your journey with ALS and I just found your blog. I want to thank you for sharing such a personal story with so many people. Every time I hear your interviews I think back to the very first graduate level course I took at UST back in 2003. You challenged me to think in a way I hadn’t thought before. I still find myself referring to the ethical dilemma of efficiency versus efficacy from time to time at work, which you helped me to identify and explore. Thank you for all that you are and all that you have given to your students over the years!

  15. Dear Bruce, I have read your posts for three years now and I have experienced awe and growth with each one. You have changed me. And I thank you so, so much for sharing your journey through ALS. I want to reply to each post but the right words don’t come. Of course, your writings bring sadness as I deeply miss my sister Joan. I wish she had had more words about her inner experience of ALS, though I sensed from the peace and grace that surrounded her (most moments and as she made her own “no treatment” decisions) that she bravely accepted her fate. Bruce, your words fill in some painful blanks for me and the value of that is truly inexpressible. Your thoughts influence my approach to life and eventual deaths of loved ones and my own death. You truly are my teacher and life mentor. You mean so much to me. Your family is amazing and wonderful. I have grown to admire and love you all. I am very grateful to have met you and for all the ways that you touch my heart and my life. I know that God blesses you and yours. I send my very best wishes, great respect, and love to you and yours this blessed Christmas season. Your friend, Sandy

  16. Dear Bruce,

    I hope your Minnesota Goodbye continues for many more months. Thank you so much for all your wisdom and insight. With love
    Margaret Grogan

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