Let me preface this entry by saying that it has become more and more difficult to write the thoughts, feelings, observations that wheel and turn and fly inside me, not because of writer’s block, but as a result of the natural progression of ALS. My arms and hands are more and more affected, and the energy required to pay attention to something so personal, so intimate as the revelations that writing brings, often overwhelms the energy that I possess. This breaking body continues to slow, to diminish, to wind down into that meditative state where thought and music and the sound of my great grandmother’s clock’s ticking on the mantle defines the hours of a good day. I began this entry over ten days ago on December 29th at 4:51 AM, and I am just now coming to this place where coherence is a remote possibility. It has become more and more difficult.

At 4:51 AM, sleep is not easy or undervalued. On any given December 29th, the dust of Advent’s month-long anticipation has crumbled into eyes and ears and nose and throat as a childhood visit from the mythical saint collapses into adult understanding of how the world really works. It is time to wipe December’s dust from the house and get back to a life shorn of its tastefully lighted displays, it’s hoped for anointment of the chosen ones each of us is, versus the chosen ones we wish we could be. I need to kick off the dust from collective dreams and get going again, quit wasting precious time with false messiahs, get the rhinestone encrusted re-gifted refuse back to the brains that spawned their manufacture, find the direction that means something more than the animated fantasy and the commercialized shouting that seems to frame December’s silent nights. At 4:51 AM, sleep is replaced by lumps of coal wakefulness. At 4:51 AM, dis ease raises the great questions of time immemorial.

Dis ease brings diminishment, and diminishment brings contemplation and consideration–consideration of the present, the moment, the here, the now; and consideration of what lies ahead, the gifts of living and the gifts of dying. Dis ease inspires contemplation, even when the dis eased space seems skin numbing, energy sucking, apathy producing. Dis eased existence explores and considers endings, post-apocalyptic howls, heavenly hopes, hellish fears, the great void death indicated by musings and amusement and fantasy and religion. It is a mighty tale, and none of us gets out of it alive.

At 4:51 AM on December 29th, I am dis ease, and the great questions loom. I make my own forays into the here and after. I consider life and I contemplate death.

The frameworks of near death might apply to the questions of near life, at least that is what Proof of Heaven, Dr. Eben Alexander’s book describing his near-death experience says. And simultaneously, the musings of Christopher Hitchens upon his own impending death from esophageal cancer in his final essay collection Mortality, serves as a tome to empiricism. Each is a corrective to the non-empirical, non-triangulated narrative of the other. I consider each framework. I think and conclude and realize. Neither is adequate to living until I die.

At 4:51 AM, experience tells me to embrace the great beyond and reject the arrogance of descriptive certainty.

I have come to a point where I don’t trust any so called insider knowledge of the afterlife as definitive or perhaps even relevant. This is not to judge the truth or falseness of the claim. Rather, it is an acknowledgement that the claim to have seen the metaphysically unknowable, that which is beyond our own physical ability to fully comprehend, to have special insight into the nature of life after death, is more than a little disingenuous. In so many of these descriptive narrations, especially Alexander’s, there is an admission as to the inadequacy of the description because the experience is so indescribable, yet claims are stated with a tension that ranges from the purely charitable to the overtly profitable, and the profit makes me skeptical. And of course, there is no way to empirically check the accuracy of the descriptions.

But reading Christopher Hitchens’ reflections on his own 19 month journey with cancer, while it speaks a truth that I now experience, also denies the truth that sensory perception is incomplete. Hitchens actively documents the breakdown of his physical body, the fog of his chemotherapy, the very real and specific bodily harm his cancer wreaks upon him and all that love him. And of course, Hitchens is the consummate atheist. He reminds us often that he expects nothing except the experience that he currently knows. And Hitchens’ writing makes me think–if all we trust is our own empirical observations, then the deaf person must deny sound, and the blind person must deny color.

At 4:51 AM, on December 29th, the question is not as easy or defined as Hitchens’ realism or Alexander’s NDE capitalism, and ALS remains an overwhelming presence to be welcomed or denied, but never ignored.

ALS gifts its recipients with a remarkably different feel to the great questions. To circle and swoop and louver and spiral and wind down the physical body, limb by lung by language, is to wake up to songs and symphonies, dances and divinity. The gift of mortality is always edge of consciousness present, if not always consciously appreciated. And it doesn’t grant me or my brothers and sisters in ALS any special knowledge of eternity. Our limitations are the same as anyone else’s, mediated by imperfect intuitions, shaped by smell and taste and touch. Our seeing is no more acute, nor is our hearing sharpened by our physical loss. But dis ease draws your attention to mortality like a roughened place on a tooth that you cannot keep your tongue’s curiosity from worrying, like a song that will not leave your unconscious, like meanderings of sunbeams that cut through below zero temperatures reminding and remanding you to the presence of summers past and the summers yet to come.

The fact is that what is coming will come. Maybe Jesus will meet you, or maybe you are on the path to perfection in your next life. Maybe this is all there is. I don’t care about that so much. The fact is that we are granted this eye-blink of a life, and it is a question of living, and dying and living through. What is beyond this plane is beyond, but we are here, and there is a lot of living to do. It really does have to do with framing death with life instead of with questions that will clearly answer themselves when the time comes. Good living is in the knowledge that our near life responsibilities are framed by our dis eased near death experiences.

At least that is how it looks at 4:51 AM.


16 thoughts on “4:51

  1. “…if all we trust is our own empirical observations, then the deaf person must deny sound, and the blind person must deny color.” These words will stay with me the rest of my life, Bruce. And it reminds me that we can not know the divine mysteries as certainties, but it helps to believe in the possibilities. And one twin says to the other in utero, “Do you believe in life after birth?”

  2. Bruce, the image of a tongue returning again and again to a rough spot on the tooth epitomizes how disease compels contemplation. I don’t know if you remain able to speak, but my husband, 4 years out with ALS, with no mobility in legs, arms or hands, and 20 percent breathing, still manages to write and read online using Dragon and a good microphone that even picks up his speech through his bipap mask. I marvel that he has the patience to do it, but I think time alone in front of screen is one of the best parts of his day. I hope that you have similar technological options like this to keep writing. Pam Learned

  3. Bruce…you can say in 4 words (i.e. “arrogance of descriptive certainty”) what most people could NEVER express. Your words are NOT easy reading, but they take me to a deep place which, I hope, will prepare me somewhat for the inevitable. In some small way, may you find comfort knowing your words have impact.

    You are in my thoughts.

  4. Bruce, thank you for making the effort to write. Your willingness to find words to say what has been happening for you with this dis ease is such a great gift. I ponder your words and the trivia of the day takes on new meaning. “We are granted this eye- blink of a life and it is a question of living and dying, living through.” I’m so grateful for all the conversations, laughter, even struggles we shared in our eye-blink at St. Thomas. Love, Kay

  5. Bruce, Chris said it very well. I never cease to be amazed at your amazing ability to write and as Chris implied the vocabulary that you use that most of us only dream of using. I want to also thank you for the efforts you make to keep writing to all of us that care about you. You are making an impact on so many. I think of you so often, my friend. Fondly, Jena

  6. “We are granted this eye-blink of a life.” Wow. So true. I’m continually amazed at how eloquently you express the horrors of living with dis ease while still conveying thankfulness and not allowing ALS to embitter you to all the goodness that life still contains.

    • Pink,
      You stated in your last blog that you would never see your cancer as a gift, but you continue to gift me with audacity and attitude and grace and blessing. Thanks for encouraging me.

  7. I have considered at length what we will find in the afterlife, not so much because of my own dis-ease, but in reflecting upon the death of first my husband and then my mother in the space of 10 weeks in early 2007. In spite of some of my own semi-mystical experiences, dreams, or whatever it would be appropriate to call them, I am skeptical of any account of the hereafter. I have come to kind of the same conclusion that you have, to live life as fully as possible in the here and now. It’s all we know, and as you said, “what is coming will come”. I really appreciate that you share your thinking with all of us, and send you love and hugs.

    • Carol, your experience speaks reams, and I think of you often as I go on this path with how you have chosen to meet life. Thank you for this comment. It will stay with me.

  8. Bruce,
    Just thank you – for your thoughts, your unselfish sharing, your spirit and your “hugs.” My love to you and Ev. Karen

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