We are smack in the middle of holiday purgatory, that time in December between Christmas and the New Year. Having grown up quasi- Christian, my interpretation of December falls between the constraints of Methodism and my accrued experiences of this darkest of months. There is something far more primal, essential, basic that seems to transcend the fantastical stories and minor miracles associated with December holidays, for in the northern hemisphere, at its most elemental, the month is about darkness and light. You can extrapolate beyond – death and birth, Alpha and Omega, ending and beginning, and having now lived with ALS for three years, I often do. But dis ease puts great distance between the religious connotations of December and the reality of its darkness, and ironically, the further I get from December’s religious overlays, the closer I feel to God.

In the silence, when darkness and light are allowed to speak for themselves, human interpretation is always inadequate.

Just in the past week, my Ev stated, “I think this is my second least favorite Christmas.” This was in response to her encounter with a flying Christmas ornament resulting in the breaking of her hand. It probably would be nothing more than a nuisance if we had another pair of hands in the house. But between us, we now have one good hand, and that hand is non-– dominant. And of course her declaration prompted me to consider what her least favorite Christmas might have been.

There is a lot from which to choose.

In my experience, I have no difficulty in recognizing December’s darkness. Even without an ALS diagnosis, in the 32 years that Ev and I have been together, December is as likely to be about darkness as it is about the anticipation of light. The darkness is almost a litany. Some years ago, we watched our sons struggle while at the same time adjusting ourselves to the loss of our family’s patriarch. I still carry the imprint of a Christmas night spent in tears – Ev’s mom mourning the loss of her husband, our son mourning a life that was and would be no more, our other son clearly confused and not yet ready to move in a new direction, Ev and I feeling totally helpless. There is nothing like the emotional fog that comes with that kind of experience. Another Christmas, we wondered if the joy of the birth of our second child would be offset by the diagnosis of leukemia in our first. Thankfully, this was not to be, but it left us tasting the fear that all parents feel for the health and well-being of their children, only exponentially intensified. During our first year in Cairo, one of my high school students died of a drug overdose, and his death was a vortex that dragged families into repatriation and our school into the self – recrimination that can only come with such a tragedy. December lasted months that year. And when I was 14, I experienced the unimaginable act of cradling the head of my dying friend as we walked home from basketball practice. A 40-year-old would not be equipped for such an event, but for a 14 year old it reverberated down the decades and still nips at my consciousness even today.

These are but a few of the high points of December’s darkness.

In the dark, it is colder, more isolated, alone and bounded. In the dark, we forget love and life and the truth of our humanity. In the dark, the false promise that light has fled the world overwhelms us and leaves us in a state so blinded that it is impossible to perceive any other choice than despair. In the dark, humans cast about in desperate search of any alternative, throwing in with false prophets and commercial ventures that leave us even more empty of the light we so desire.

Listen, in the northern hemisphere, December comes, and darkness reaches its apex.

ALS has taught me that even when the light of the world goes out, the light of your heart remains. It may be harder to discern it, to feel its presence, especially in the thick darkness of ending, but every ending spawns a new beginning. It is the endings where the dark is most easily perceived, overwhelming the tiny points of light present in the birth of something new. My brother in ALS, Stu knows this:

“If you are now expecting some surprising uplifting learning from these experiences I’m afraid I must disappoint you dear reader… The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?”

The fact is that in the darkness it may seem that there exists nothing uplifting, yet the darkness lifts up – advent, a new chapter, a page turn, a death, a birth. In the end, the light that comes to the darkest of places is not a light that we find, but a light that we bring. Dis ease exponentially multiplies the difficulty for us to see the light within ourselves. My brother Stu is clearly at that point, and all I can say is that his light shines out of his own darkness onto my life. The question he asks is the question we all ask. It is not specific to ALS, rather it is the question of a life well-lived. It is a question of truth, raised in December’s darkness, reflective of the light with which he has illuminated all of us.

Listen, in the northern hemisphere, December comes, the earth wobbles and darkness ends. We begin the slow upward journey into the light of sunny days and late evenings and warmth and short sleeves. There will be cookouts and beer on the patio, the freshness of spring and the indelible smell of summer. Earth will wobble again, the fall will come, and light will end. The Alpha and Omega, stripped to its core is nothing more than the effort to engage darkness, yet find balance in the light of love and care.

And in the effort and the balance, the lightness and darkness, the ending and the beginning, faith emerges from purgatory, and Methodism and experience are not enough to capture its full meaning.


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.

All Good Gifts

It is that time of holiday truce between Thanksgiving and Hanukkah and the season of Advent, and I am reflecting on the many gifts I have received since my rebirth in ALS. In my three years since diagnosis, it has been so rare to feel like there was something I could do about my physical regression. I have gotten used to the idea that, as one of its gifts, ALS takes and all I can do is anticipate the loss. This is been borne out by experience, for example my mobility has regressed from walking with the support of a cane to a walker to using a scooter and now spending most of my time in a power wheelchair. The decline of my physical capabilities has been inexorable, and the challenges have become, especially in the past three months, exponentially iterative – one multiplied on top of another on top of another. It should be no surprise that I had come to the point where I despaired that anything I might do in anticipation would be totally palliative in nature, holding off the inevitable and trying to maintain where I was for a few more days or weeks. I had come to despair that nothing would result in my feeling better, that each day would be a little closer toward death, that the best I would ever feel would be right now, because the nature of ALS is to feel worse and worse and worse. Thankfully, in the past month that situation has changed.

In June, I was tested for diaphragmatic strength and phrenic nerve function to see if I might be a candidate for a diaphragmatic pacing system or DPS. Much like a heart pacemaker, only with the power source outside of the body, the diaphragmatic pacing system stimulates the diaphragm causing it to contract and not so gently forces the person to haul in a large breath of air. The DPS was first approved for persons with spinal cord injuries as a way of weaning them off of a ventilator. Aside from the initial surgery to place the electrodes in the diaphragm, the DPS is far less invasive and requires much less maintenance than a ventilator to keep it going. Over a year ago, the Food and Drug Administration approved the DPS on a compassionate care basis for the treatment of ALS. I have been watching with great interest other brothers and sisters in ALS who have had the DPS installed, and I have been doing a great deal of research on the pluses and minuses of the system.

Having passed the June test, it came down to waiting for my breathing to deteriorate into the treatment window that Mayo uses for its protocol, and to file with my insurance to see if they would support the procedure. Those two events came together in mid – October, and I had to decide quickly whether I would do the procedure or not. One reason you might not go through with the procedure is that the surgical team is not sure whether the DPS can be implanted until they have you open and they can stimulate the diaphragm directly. If it contracts, all systems are go; but if it does not, then they close the incision and send you home. I have had enough disappointment already, so even as I scheduled the procedure at Mayo, I steeled myself for the distinct possibility that my diaphragm would be too far gone for the procedure. But it was a rousing success. On November 14, I had surgery to install the diaphragmatic pacing system, and on November 15, I began the process of calibrating its stimulation to the wide smiles of the medical staff.

And here is the first gift.

I feel better. I am breathing more deeply, tolerating the electrical shock to my diaphragm very well, getting used to speaking around the delivery of the shock, and ironically, in spite of fatigue from the surgery, I have more energy. Unlike every single palliative intervention that we have made in the past three years, the DPS has actually helped me experience improvement. I am even sleeping more soundly, though not with the device, and my voice feels stronger than it has in a number of months. What a joy to experience any physical improvement.

Gospel! And there is more.

I have managed to solve some communication problems that I was having before the surgery. With the loss of hand and arm strength, I had lost the ability to use an iPad, to manipulate both the speech to text software I was using, and the smart house technology that I relied upon for basic functions such as turning on and off lights or music or other devices. In the past month I had despaired that I would be totally reliant on another person in order to accomplish such basic tasks. And to be truthful, I am so reliant on those who are with me for such simple things as straightening my fingers, placing my hand on the joystick of my wheelchair, or doing a bit of range of motion just to relieve the physical effects of ALS. But in communication, with a stronger voice and new technology workarounds, I am beginning to find a bit more of that independence that I value so greatly. Using an actual laptop computer instead of an iPad has allowed me to interact totally by voice, and while I am not back to 100% of what I was, the 85 to 90% is highly acceptable. So, even though this is more of a symptom handler, in conjunction with the DPS, I feel like I have voice control over my life again.

But, dis ease insists that the shoe must drop.

Over the past three years, I have worked hard not to be hopeful in my progression. I know that sounds strange, but I have learned that in such hope, particularly with ALS, lies crushing disappointment. I have sought to be realistic and honest and truthful with myself about my prognosis, my life as it continues, my life as it ends. With the installation of the DPS, I find myself having to reconcile this little uptick in how I feel with what ALS hammers home day after day after day. I mustn’t hope for more than is possible. What is possible is that I will feel better for a while, that I will find my voice again for a while, and that my physical body will continue to deteriorate. Reconciling the juxtaposition of deterioration with the tiny flame of hope that the DPS kindles has become a new life task for me. I am by nature a hopeful person, and I have managed to channel my hope into the lives of those for whom I care and that I love. My hope is for humanity, and that through relating my experiences it is helpful to find deeper humanness. And I have learned not to hope for myself except to accomplish this life as best I can within the framework of the circumstances in which I must exist.

My new reality is really just my old reality – I will fulfill body and spirit as designed.

In essence, I am granted the gift of spiritual rationalism. It is in the nature of the human body to wind down until death. It is in the nature of the human being to hold death off for as long as possible. These are facts. One can leave you depressed and morose, the other unrealistic and silly. So I now seek to continue my process of reconciliation, feeling better yet getting worse. I know that none of this is a cure for ALS. Just as Leonard Cohen points out that there is no cure for love, ALS points out that there is no cure for life. But, to have a procedure that results in feeling better almost immediately, coupled with finding a way to bring voice control back over my environment, I have a more positive outlook than I have had in months. I know that ALS continues, but I feel more the possibility of this spiritual and physical and emotional goal I articulated to myself three years ago – to live fully until I die.

And this is no holiday truce – each of us is granted the gift of living in hopeless possibility.

Prophecy and Respite

Psalm 77 sings dis ease’s prophecy:

I cry aloud to God, and God will hear me. In the day of my trouble I seek the Lord; in the night my hand is stretched out without wearying; my soul refuses to be comforted. When I remember God, I moan; when I meditate, my spirit faints. Selah

December is the season of prophecy, a time for considering the truths that prophets of old proclaimed. In history, prophets served as a clarion call, a thorn in the side, burr under the saddle voice of the particular dis ease of their times. I cannot help but see parallels between dis ease and prophecy, for the similarities between the prophet and dis ease is striking. In The Prophets, Abraham Joshua Heschel observed, “We and the prophet have no language in common. To us the moral state of society, for all its stains and spots, seems fair and trim; to the prophet it is dreadful.” Substitute “dis ease” for “prophet” in this passage and the parallel understanding of how dis ease leaves us naked in the wilderness of our own lives is clear.

Prophecy is about awakening, becoming conscious of the truth that is all around us. The prophet brooks no denial, yet it is not the role of the prophet to call us to despair. Rather, we are extolled to seize responsibility for ourselves, our brothers and sisters, our world, no matter the circumstance. Heschell writes, “To us life is often serene, in the prophet’s eye the world reels in confusion. The prophet makes no concession to man’s capacity. Exhibiting little understanding for human weakness, he seems unable to extenuate the culpability of man.” Dis ease serves the same role, existing in spite of denial, requiring reconciliation between its truthful prophecies and the ease and health each of us desires. It is a difficult razor’s edge on which we humans find ourselves precariously balanced, for no matter what, we know that dis ease is our future, a call to consciousness, an awakening to its stark reality. But losing the hope by which we can light the world must not become our default option.

Am I listening?

ALS is my prophet, my future, my present, my past. Each day, I awaken to my prophecy with the convoluted and complicated task of fulfilling the human condition ALS has so firmly bestowed—to embrace my dis ease, yet not deny hope. It is exhausting, difficult to realize, never fully accomplished; yet ALS prods me to attain the exquisite humanity of this dichotomous awareness. Rebbe Heschell gets this: “Who could bear living in a state of disgust day and night? The conscience builds its confines, is subject to fatigue, long’s for comfort, lulling, soothing. Yet those who are hurt, and He Who inhabits eternity, neither slumber nor sleep.”

It is a constant and inexorable tension; the unconscious serenity of ease, the unsleeping prophecy of dis ease, the need for respite and slumber.

The dreams of mystics and scientists and holy persons and activists are prophecies of respite and imagination, holy paths leading to a more fully realized version of our humanity rather than the dis conscious humans we so easily embody. Prophecy’s dis ease requires a robust imagination to move us past the brittle reality we so easily deny yet deeply know. But to access this imagination, we humans cannot engage our dis ease one hundred percent of the time. Even the strongest among us requires respite.

We are only human. We need our sleep, and we need our dreams.

The Buddha, before enlightenment and in spite of his father’s machinations, recognized aging and disease and death and the renunciation of material comforts to set him on his holy path. The Prophet Mohammed knew visions of Islam, the way, to right the creaking, failing religious practices of his day. Saint Hildegard von Bingen lifted her sadness with holy visions of light within light. The logic of the Law inspired Maimonides to perceive within its tenets, the Unity of G_d. The prophecies of peace and audacious dreams for human compassion and love inspired Thomas Merton, Thich Nhat Hanh and Martin Luther King. Susan B. Anthony dreamed suffrage rights of full citizenship. Albert Einstein described streams of consciousness, a cessation of verbal thought in which symbols swirled and his own scientific understanding of the universe deepened into epiphany.

Holy paths need holy dreamers and holy dreams. Sleep begets dreams, and dreams provide respite.

When I was first diagnosed with ALS, I had fantasies and dreams of running away from the condition, associating my dis ease with place rather than person. Even when we went to Korea to visit our kids, I dreamed that the plane trip with its pressurized cabin was a cure. It was such a vivid dream, that I awoke our first day in Seoul with the delicious feeling that I had imagined ALS, that I was free of dis ease’s burden, a respite from the presence that haunted my waking. I wrote of this simultaneous joy and grief, as reality slowly dawned on me that I had dreamed one of those hyper-real, jet-lagged, edge of consciousness visions only to awaken to the dis eased reality at hand. And I learned the respite of those few moments was a refreshing breath that crystallized sadness into jewels of realization that I was not helpless in the face of this or anything else. Physical realities notwithstanding, I could go on, finding the strength to persevere until I could not.

One of the great programs of our local ALSA is the Jack Norton Respite Care Program. Designed to give caregivers up to 18 hours per month of much needed “me-time,” it provides home care assistance during caregiver time away. It should be of no surprise how important a program like this can be. Most of us intuitively know the value of a little down time, whether it be a few minutes break or a vacation. With ALS, the care and feeding of caregivers is especially important, for early on in this dis ease, the realization of the enormity of what is to come can be overwhelming. Ev and I know what happens when she is not able to find the time for exercise, yoga or a cup of coffee with friends. Suffice it to say that Ev is much better when she is able to take care of herself with a little time away.

Prophets speak our fear of abandonment, that we have been left alone to face the conflicting pulls of denial and despair. They tempt us to think that God might be a cruel prankster or a benign being suffering from ennui with this creation; or even non-existent as evidenced by the overwhelming imperfection seemingly beyond human capability. When I consider humanity’s collective pain, I could go the way of the psalmist, moaning and fainting. When I consider my own dis ease manifested through ALS, despair is possible each day. But somehow, I remember the rest of the chapter:

I will meditate on your work and think about what you have done. God, your way is in holiness.

In the meditation, the holiness, the reality, the work manifest in the words of the prophets, is dis ease. And there also lies the respite required to dream the holy ways that bring us the hope we so require. In this season of prophecy, dis ease shows me despair, truth and hope.