The Ghost of Christmas Past

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

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

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

ALS can be quite the killjoy.

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

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

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

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

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

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

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

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


10 thoughts on “The Ghost of Christmas Past

  1. How you stand up to ALS reminds me of the student in Tienanmen Square standing before the PLA Tank. There is no way the soft machine can stand up to the brutality of the tank, however, courage dictates for him to stand anyway.
    Because of that young man’s act of courage, people all over the world are heartened to stand up to tyranny. You stand before ALS in the same way and I read other’s comments on your courage. You inspire us to carry on the good fight. To fight for you. To fight for ourselves.
    Brother, do you have any idea how you telling us of your relationship with dis ease teaches the rest of us? Makes us a little more grateful? Inspires us to carry on and treasure you!
    I love reading your blog for through this I have come to love and admire you more than you could know.

  2. Bruce, what’s often so sad about this profession of Hippocrates that so many of us hold in esteem is the failure of the practitioner to realize that their “Primum, non nocere” (“First, do no harm)” refers as much to their diagnosis, as to their manner of delivery of the treatment.

    Some of these proud gods may be traumatized by the content of the diagnosis, knowing full well their inability to do anything about it. They are too old to cry with you and too young to know how to hold your hand and empathize. It’s an excess of the intellect and a paucity of the spirit.

    This tale of your Ghost of Christmas Past needs to be taught in every medical ethics course. It is a malpractice to treat your patient otherwise.

    Thank you once again for your insights.

  3. Dr Bruce, I still reflect 16 yrs later on the dialogues/discussions that were the essence of your leadership ethics course, one of the best classes of my 170 grad hrs! Wrestling with multiple issues/perspectives as a learning/expanding experience was certainly something that happened to me in your class, even after many PhD hrs at UMN! In my current coaching of school and district leaders, I hope I am practicing what I learned from you and my peers. We prayed for you this morning as we started our drive to our lake home, a habit we do before we leave either home, that in your suffering there truly is joy from The Lord!

  4. 6 December is marked with your news on my calendar. So much growth in understanding in 3 short years – for so many of us through you. So much pain, and oh, so much joy!

  5. It’s not too late. Perhaps your Present Spirit is encouraging you to speak. Bless you for your candor and for your generosity in letting us share your profound journey. Peace to you.

  6. I heard the program on NPR today, in spurts. I came home and told my wife, a retired physician, that we should listen to the whole broadcast together. What portions I did catch were amazing. And now I find a new source of that wisdom here. Thanks.

  7. You are truly amazing…as your share your story and your heart I am moved to be a better person. I recall my sister getting her MS diagnosis in a similar fashion…and I agree, how different things would have started off if things would have been presented in a more caring and understanding manor. I am not a doctor but I strive to be more tuned in to the needs of others so that I “do no harm”. Thanks so much Bruce…God bless you and your family.

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