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.

Job 2.0

Saturday morning misty grey, foggy cold dewdrops hang from branches of trees recently colored and now deep brown and black and sad. I cannot say that I am unaffected by the scene outside my window. Somehow, the picture outside mirrors me inside, working through another chapter in the diary of my journey home, too reflective of the fog and damp, too conscious of the new life lessons dis ease continues to thrust upon me–this educational guest I did not invite to visit with me or anyone else–inside. If I can just part the curtain of noise and haze, clear the fog of the path, down to the quiet center, a small ember, a tiny light burning, telling me to be still and know, this is nothing.

God asks, “Where were you when I laid the earth’s foundations?”[1]

What could be so obfuscated, so misty? I must learn to sing this new song with its unfamiliar tempo, these strange rhythms, this atonal identity where engagement and work and institution no longer exist in tonal harmony. It is a place where demons tread, mocking questions in the night, purposeless rolling around the condo by day – what good are you now if you do not work? No response can adequately answer, and it never could. Consider it honest documentation of the path, for the question arises no matter what—I was inculcated, powerfully reinforced to tie work and self together in an intimacy reserved for lovers. And while I saw it coming–the day when I left, when I gave up the responsibilities, the day when I achieved the ultimate enlightenment of loss–the post apocalypse still remains. And I rattle around the tempting Bob Dylan question, “what good am I?”

God asks, “Who is this darkening counsel with words lacking knowledge?”

It isn’t that I won’t get through this. It isn’t that I don’t see the necessity and the rightness of what I have done. It isn’t that my worth suddenly plunged off a cliff once I stopped working. But my heart’s love is still catching up with my head’s logic. Feelings and emotions are the hare in the race—fast out of the gate yet falling behind the tortoise of well-worked thinking. And both of these sides of me, the feeling and sensing, the thinking and analyzing, intertwine back and forth, a roadway of rollers where speed and momentum only get you through the first climb of quasi-despair. Logic and sadness dictate the realization that even had I not left, I would be questioning the same as I am questioning now. These are my gray fog mists, my dewdrops waiting to fall from melancholy trees to be sucked up into the dry air, evaporated before they reach bottom.

God demands, “Prepare yourself like a man; I will interrogate you, and you will respond to me. Would you question my justice, deem me guilty so you can be innocent?”

This week, I spoke with my dear sister five time zones away, and we shared the intimacy of losses both experienced and expected. She anticipates, a parent in her ninth decade, ancient and susceptible and vulnerable and old. There is nothing to say except to love the fact that such hurt is present, even though the fear is in the future moment. I have experienced such anticipation, and even for the most centered and mindful soul, such reality overwhelms the stillness. It is like biting one’s tongue, only to return to the point of swelling as susceptible to another and another bite. And as we center on the anticipation and the memory and the rebirth that is still taking place, the clarifying realization emerges that it is not an easy center, and your own consciousness does not spare you from grieving and loss and hurt.

God asks, “Have death’s gates been revealed to you; can you see the gates of deep darkness? Have you surveyed earth’s expanses? Tell me if you know everything about it.”

This week, I bribed my kids to take me to the Led Zeppelin “Celebration Day” movie event. It was a full house, and it was fun and most of all, it was time away from the sorrow. We bathed in waterwalls of sound, washing over us, piquing us not through the profound and new, but through the shared experience of rock and roll and rhythm and blues and love of my kids. I did not anticipate the lightness, for I expected to be tired and a little out of sorts given the hour’s lateness. But now, in the mist and grayness of a Saturday cadence to a rhythmically struggling search for the new path, this brief time together is a memory of strength and light and smiles and joy. Oh, and Jimmy Page can still put out in a way that leaves you breathless.

God asks, “Where’s the road to the place where light dwells; darkness, where’s it located?”

And then, there was Friday’s visit by my colleague and friend and secret school principal ally who came to see me, ostensibly to talk through a couple of program opportunities back in the trenches. He showed me some of the testimonial that he has collected to interpret the meaning of the work we used to do together, that he still carries on. By the end of his visit, my heart was lighter as the wellspring of 25 years of accrued experience was tapped and opened, relieving the pressure that self-worth’s questions can build. Did he really come for a consultation, or did he just sense that for a friend, such a conversation would offer the briefest of needed respite from the journey? I don’t know, and I doubt if he would say, but I know that the discussion was good for my soul, and it allowed me to plunge back into the necessary darkness of working this out.

Job answers, “Look, I’m of little worth. What can I answer you? I’ll put my hand over my mouth. I have spoken once, I won’t answer; twice, I won’t do it again.”

I’d like to pretend that there was some large message, some portent of a greater awareness, a higher consciousness, a communion with God that I could point to over the past week. But I have experienced nothing so large or significant. It has been mist and gray and damp and cold and dewdrops waiting to fall. It has been the “Dangling Conversation… voices out of rhythm, couplets out of rhyme…” It has been enforced presence, well beyond the center that I hang onto for now. And yes, for the first time in a long time, it was tears beyond the catch in the throat and the leak out the side. It was sobbing, hiccuping, snotty nosed cannot catch your breath sorrow.

Job continues, “You said,‘Who is this darkening counsel without knowledge?’ I have indeed spoken about things I didn’t understand, wonders beyond my comprehension.”

The day after yesterday gives the best reason that we live in Minnesota. Cool and crisp and blue and sun, it lifts the spirits beyond the sorrow. I don’t know how much longer I will live. I know that I am dying. But this is not new knowledge, and it is not ALS. It has always been so. Dis ease only changes the circumstance and the speed, but the knowledge remains as it was. The autumn sky removes the blinders, so that even despair has a hidden joy.

Job ends, You said,‘Listen and I will speak; I will question you and you will inform me.’ My ears had heard about you, but now my eyes have seen you. Therefore, I relent and find comfort on dust and ashes.”

And a still voice within continues to sing a new song.


[1] All quotes, unless otherwise noted, from the Book of Job, Chapters 38 & 40, Common English Bible

Say It Ain’t So, Joe

If you have been reading closely, you might have discerned my skepticism of individualism; the idea that the end-all and be-all for determining the goodness of any course of action should be based upon what is first good for the individual. As much as I believe in individual potential, I cannot help but feel that there must be a balance between the one and the many, the person and the people, I and us. Individualism taken too far has no room for compassion, and has no patience for regret. While our culture tends to see a “No regrets” life as extremely desirable, I cannot help but think that without some sense of regret, there is no opportunity to grow beyond one’s current state. “No regrets” is a recipe for walking-death, calcification of capacity and capability. I cannot imagine having no regrets. I cannot imagine a life where regrets–both of commission where one actually does something they would take back, and of omission where we should have done something but did not–were not front and center as major shaping experiences of the persons we are. In regret is realization, and my teacher, friend and constant companion ALS, sharpens regret’s realizations so that omission dully aches and commission recognizes that there isn’t any time to make the same mistake again. Dis ease points to regret and tells you that there is no going back.

Regret is strong on my mind this week, because I have, in spite of my best intentions, paid such close attention to the scandal surrounding Penn State University, its football program, and most particularly the former coach Joe Paterno. The story could have been written by Euripides, for no matter how wise or wizened the person, there is always an opportunity to commit a mammoth mistake, to turn our backs on something that we clearly have to know is happening, and to instead try to cover up our failure through the inappropriate exercise of power, influence, or otherwise. It is the nature of life that the greater the legacy, the more there is to lose. Such is the case for this proud University and the enigmatic Joe Pa with the realization that its great narrative–that good guys can really be good guys–must be revised.

In the past months, Paterno’s legacy as one of the good guys in Division I college sports has tumbled down a rabbit hole of his own making. Since the scandal came to light that Assistant Football Coach Jerry Sandusky used his position and his Second Mile charity to “groom” boy victims for the most lurid and disgusting criminal sexual activity imaginable, Paterno’s bequest to the legacy of his university and football program has plummeted from a pinnacle where ethical and successful are not mutually exclusive; to a middle ledge of recognition that the coach committed sins of omission—he didn’t report and he didn’t follow up; to the bottom feeding realization of callous commission—Paterno knew what was going on and actually interfered in the investigation of his minion. To salt the wound even more, we have learned that Paterno sought an exit contract of great advantage, even while the outline of this horrible story was coming to light and he was being called to testify in front of a grand jury.

When focused only on the situation, the cover-up, the lies, the lack of responsibility and the documented hyper-concern for public relations fallout rather than the harm inflicted on so many young children, it is hard to see this situation as anything but horrific. But for me, there is a huge lesson here, one that relates directly with what I have learned from dis ease about regret. That lesson has to do with transparency, honesty, and the ability to name something for what it is, to speak truth in the face of power, to hear even when you don’t like the message. In a way this scandal goes beyond Paterno, and is instead about the fact that each one of us will face the choice to be forthcoming, to admit that which we regret, or to regret for the rest of our lives that in our lack of honesty came more harm, hurt, pain. In this fact is that small kernel of hope that I hold.

Nothing justifies Sandusky’s behavior and Paterno’s cover-up. Paterno and the University Powers were scared and rightly so. Our gotcha culture should frighten the most honest among us. It offers very little payoff in telling the truth. Admit a mistake and you will be portrayed as mistaken; admit to regrets and gotcha will make you truly regret it. The cycle feeds upon itself until it becomes so harmful, so lurid, so unreal that it is impossible for the person in the moment to see any way out except through obfuscation or suicide or stupidity. These powerful men were frightened of the consequences, and I think that is the point. The realization that you will suffer the direst consequences for honest, transparent communication about the worst thing possible happening, is something in which you can have faith, and whether or not you have stepped forward in truth speaks reams about your strength and faith and character.

Consider, in 1998, had Joe Paterno and Penn State University confronted Jerry Sandusky, reported him to the authorities, come clean about the implications that something like this could take place right under their noses; and then used the power that only a Research One Land Grant University possesses to build a center dedicated to the prevention of such heinous abuse, we would now see Paterno’s confused legacy much differently. Instead, he missed the opportunity to confront a terrible wrong in his program, root it out and insist that the university dedicate itself to providing leadership in child abuse’s prevention. The regrets that those responsible for leading the Penn State community must currently feel should be immeasurable. That such an opportunity was not seized at the time, and that only now in calling out the outrageous hubris of institutional fear and corruption is there any talk of honesty and healing, is beyond regrettable.

In the end, there is no hiding the truth. The more that I live, the more I keep relearning that the things that I do will almost always come to light, and the things that I could have done will become obvious over time. As I lose more and more physical function, I have also learned that the things I cannot do–there is no hiding the physical regression of ALS and the consequences of a dis eased existence—have their own eventual grace. And in such grace is love, blessing, faith, hope, the realization that love unexpressed is love unrequited.

Or, you can in the words of Pink Floyd, “…exchange a walk-on part in the war for a lead role in the cage.”

Each one of us is granted the opportunity to reach past our regrets, our fears, our pride, and try to make things right, even if our attempts are rejected. Dis ease teaches that such legacy, framed by our care and not by our fear, is far more blessed than the embarrassment and humiliation at the time. I know that honesty requires courage. I know that courage requires transparency. I know that not everyone can handle such openness. But I also know that if something good is to grow from something bad, then it begins with light and sun and fresh air and truth.

And then, I think it might be reasonable to say, “No regrets,” both individually and collectively.