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.