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.