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.

Selah

Sandy Hook

I was working on a blog entry, a tortured affair that was probably too much of something or other for its own good, when the shootings at Sandy Hook Elementary School took place. After the killing of so many children and their teachers, I just don’t have it in me to comment on anything but our collective dis ease. The primal feelings evoked by such evil is beyond anything I can adequately do justice to in a blog. If you were like me, the sight of our President struggling to hold his emotions in check, speaking the unspeakable, was a mirror of the anger-grief churning inside as the enormity of the tragedy was further revealed. And once again, I felt the despair that our human journey is at a crossroads where our intentions–beautiful and transcendent, compassionate and caring, loving and forgiving, intelligent and thoughtful–continue to retreat in confusion and horror from the enormous evil we can and will inflict upon one another.

Who needs ALS to speak dis ease when horribly afflicted men-children perpetrate such heinous acts? For me Sandy Hook is personal.

I love a woman who teaches music to little children. I gaze at her as our understanding of the full horror continues to unfold, and I realize that it was teachers like my Ev, locking down classrooms, telling the children they were loved so that if the killer came to them, love would still be their final moment, holding the horrific sights at bay for as long as they could, asking the children to close their eyes, to perhaps keep one last vestige of any innocence their five and six and seven and eight year old lives deserved. I cannot imagine the haunting, terrifying dreams these incredibly strong and caring and competent teachers, women, will know in the coming years. We now know that the six women killed did everything they could to stop the killer. They were brave, and they were professional, and they placed themselves between children and evil in an attempt to save them.

As a newly retired dean of a school of education, I cannot help but see the faces of the young pre-service teachers we prepared for teaching careers. For them, this is a life choice, not a stepping stone. It is a calling, a voice that says to them that a commitment to children is a far greater thing than the salary and esteem of another profession. Each of them will receive training, information, practice in how to mitigate horror if it should come knocking. And with that in mind, they will commit to creating a loving environment where all children learn. While not mutually exclusive, the skill and artistry required is enormous.

And let me share that there were a few times in my life as a principal where I felt my own safety threatened. Dawn Hochsprung was the principal of a K-4 school, and if you have seen her Twitter account, you see a principal who believed in projecting her entire being in support of her kids and teachers, underscoring their successes, bucking them up to the next challenge, urging them to see the joy in learning, defining her work with passion and love. I feel I know this remarkable woman for I have been privileged to work with so many like her, educators who skillfully bring teachers and kids and parents into a fold where school is opportunity after opportunity, an engaging world of wonder, a place where hard work is appreciated. She gave her life on a day when I am sure that the challenge of the upcoming holidays and keeping the kids somehow engaged was foremost on her mind. Not in her wildest dreams would she have predicted the terrible events to transpire and what would be required of her.

The faith required of parents to trust the safety of their schools cannot help but be tested. To send your six year old off to school on a Friday, to never see her alive again would crush your soul. Anyone who is a parent knows the normal safety fears that we carry for our children. The loss of so many children is so unfathomable, so overwhelming, so undefinable, so wrong, so wrong. My sons are grown, and I still fear for them and their lovely women. To lose your young child in such horrible circumstances would be harder than anything. I cannot help it. The grief swirls through my soul.

I cannot leave the above without considering some very preliminary thoughts about what we should do. I am sure others will have far better ideas than me, but here is a beginning.

Remember the saying, “Guns don’t kill people, people do?” Let’s agree with the point and start a discussion about responsibility. When do we begin to take responsibility for the fact that there is no meaningful way to intervene on behalf of an “adult” with serious mental health issues that could lead to violence? I recognize the possibility of abuse here, but common sense and logic would lead us to conclude that there must be better ways. An 18-20 year old, troubled to the point of homicide, is not going to seek out help on his own. We need better ways to provide meaningful interventions.

The temptation will be to forget, to find ease in the blessed amnesia of denial. We will find ourselves wanting to blame, to marginalize, to distance ourselves from the perpetrator and the illness he manifested. We will never find resolution this way. It is time we embrace the reality that the mix of guns and mental illness is too complex for a single, once and for all solution. It is immature to think otherwise. We need dialogue about mental illness that is decidedly different. The ease of collective amnesia will only allow more and more manifestation of such events as Sandy Hook. We need the adults to show up.

And in the name of responsibility, whether you like it or not, we need an educator’s sense of propriety. That means we don’t get to marginalize others due to their challenges. They are our children, and we need to take responsibility for them, not distance ourselves as if it couldn’t happen to us. This means that all our children need us to claim them, not just the easy ones. Educators do not get to be selective, and neither should our society at large.

Only when we have this dialogue on mental health, can we begin to have a meaningful discussion about guns.

It will be tempting to go after the gun laws. For whatever reason, Americans own so many guns that the effect can only be cosmetic. I am not saying that we should not talk about what we want gun laws to do, but as an old dyed in the wool liberal, I already know it will be a lot of energy expended for little return. Gun ownership is legitimated by our laws. The estimate is that there are over 300 million guns in the US. The horse is out of the barn. But, we can certainly have much more meaningful requirements for owning a gun.

A Honda Civic can also be a lethal weapon in the wrong hands. Why don’t we require licenses for everyone, much like we do for driving, with background checks, and periodic refresher courses and checkups on safe storage and whether one still meets the licensing requirements of gun ownership? I am an adult with disabilities that preclude my driving safely. Just as my eligibility for a drivers license should be reevaluated against my ability, so too should we ask the same of gun owners.

And everyone–buyers and sellers–needs to meet the standards over and over again.

Finally, we need to recognize that many of the best solutions to guns and mental illness will be local. What works in Wyoming might not work in Minneapolis, and vice versa. This also means we need ongoing dialogue, constantly holding ourselves responsible to work the tensions between safety and security, individual freedom and social responsibility.

My heart is broken by the events in Newtown. I take this so personally as a teacher, a principal, a preparer of new teachers and principals, a father, a citizen. Platitudes will not help, and the only inappropriate response is to not engage in the dialogue with respect and truthfulness.

I will return to my blog next week with a seasonal thought, but today, I hug my wife and sons and daughters-in-law a little more tightly and thank God they are here and safe.

Advent

Last week, in a fit of post–Thanksgiving, pre–Christmas serendipity, Ev and I found our way back to the Mayo Clinic for our quarterly pilgrimage. It was a very different experience for us this time, one of diametric opposites in the same visit. On the one hand was our familiarity with the Mayo drill; we have been making this journey for nearly 2 years as Mayo is where we confirmed my ALS diagnosis. The trip to Rochester has taken on the comfort of an old pair of jeans. We know what to expect, who we will see, and with a few exceptions we know what we will hear–no cures and plenty of dis ease management. On the other hand, after our August Mayo visit, we agreed with one of our doctors that given the statistics on ALS mortality, combined with the documented time since my first noticeable symptoms, it would be appropriate to consult with their palliative care clinic to discuss other management decisions. This would be a new experience, and we had no idea how it would go.

I have committed to keep you up on the so-called progression of my dis ease. Mayo is a very good place to document that progression. No longer am I asked to clench my fists, resist neurologist’s pushing and pulling, sit still to be hammered for evidence of hyper-spasticity, or try to touch fingertips to thumb as quickly as I can. There is no point as the weakness in my limbs is so pronounced that even a simple offering of the hand is an adapted accomplishment. Writing is inefficiently accomplished, causing me to spend longer and longer periods between each of these entries. The bad news is that my ALS progresses and my limbs and torso weaken with the progression. The good news is that my breathing is still almost normal, I am able to chew and swallow and talk, and my sense of humor is intact and well within the boundaries of the mostly inappropriate. As I have come to understand ALS more fully, I am thankful that, at least thus far, I have no frontal temporal dementia (although I may have associates and family who would argue this point). The result of the weakness in my limbs and torso is, more than I ever would have thought, a great deal of consultation about toilets and bathing and eating and sitting and as few transfers a day as possible. I will spare the details. No one has offered any counter narrative to the expectation that my lifespan has been significantly shortened by ALS. Hence, the reason for meeting with palliative care specialists remains.

I don’t want my observations about the palliative care meeting to diminish either the importance or the significance of what we surfaced. Suffice it to say that I suddenly realized that the field of palliative care is much newer than other medical fields, and therefore it probably tends to attract a younger professional. From a traditional medical framework, palliative care is probably a dead-end (no pun intended) for an ambitious researcher/treatment provider. However, with a rapidly aging population, an overly eager system to treat that which cannot be treated and the need to account for life quality, palliative care and end-of-life decisions have taken on far greater meaning for most medical establishments. In this respect, it should not have surprised us that the post residency doctor in training with whom we first met seemed incredibly young to be consulting on such mature decisions. And it really should not have surprised us that the supervising specialist was in his early 30s if that.

I must admit my ageism at this point. It felt funny to both Ev and me to be discussing end-of-life goals with a pair of doctors that seemed like their beginning of life work had only begun. But it was important to get over that, and I think in the long run there were two things that were surfaced in the conversation that were very helpful to both of us. First, I was able to articulate three basic premises that allow me to feel that life is worth the challenges of ALS. It should be no surprise that these centered in family and friends and a sense of continued giving valued by others. But the second thing I surfaced in this conversation was probably more profound. The economics of dying are real. I have no desire to bankrupt my beloved partner’s retirement, forcing her to live the rest of her life with less security because we made the decision to put our finite resources into some symptom-management scheme with very little hope on return. This may seem quite logical, but for me it was a profound realization. I have never been comfortable placing monetary value on random acts of living, happily leaving such endeavors to the actuarial practitioners who design life insurance policies and other such products. So in spite of being a bit taken aback by the age and life experience of our doctors in the palliative care unit, the result is one that will help to inform much larger decisions that are coming in the near future. We agreed to go back; a beginning of sorts of a new chapter in managing dis ease’s progress.

This focus on progression and management seems appropriate to me this week, as we are in a season of progression, from prophecy to birth. This week will be my second anniversary since diagnosis, my own Advent into dis ease if you will.

Advent, New Year’s Day on the Christian liturgical calendar, a time for rebirth and prophecies and holiday luster and symbolic representations with multiple and oppositional meanings began on Sunday. In its common usage the word advent means beginning, coming, arrival. But the season of Advent is confusing. Its bifurcated musical traditions are instructive as they careen back and forth between constructs of saccharine consumerism, holy mysticism and all things in between. Its liturgies of consumption are fed and watered and fertilized and shouted from every media mountaintop in the name of commerce, but its prophecies portend a far different intention.

Advent now is a time of prophets and profits, heralding a future of highways made straight, not just tamed by Jeep and Chrysler and their ilk. Advent’s original apex–the birth of a child, disenfranchised by poverty and illegitimacy, heralded by singing angels, announced by the cosmos–now barely holds a candle to the liturgy of the National Football League’s regular season, brought to you on Christmas Eve to ease your pain and fill the dis eased recesses of your soul. And in spite of the wise counsel of so many financial experts, we cycle into holiday debt barely paid off until we begin the cycle all over again in vain attempts to push back the darkness and express the inexpressible through gifts as prone to exchange as acceptance.

Oh, and don’t forget the nativity tableaus brought to you by Santa on the stable’s rooftop. It is an iconography meant to prey on the dis ease of humanity, whether it be a nagging feeling of disquiet or ALS.

Dis ease begets advent over and over again, a progression in and of its self. Although dis ease named my disquiet in the Advent season, I didn’t realize it was its own prophecy, visions foretelling numerous variations on ALS’s progress and loss. It was a beginning, a coming, an arrival challenging me to reinterpret the meaning of the old prophets and insisting on the need for new. It caused me to change my frameworks not just for the season of Advent, but for the advents each day brings in its own tableau of a quieting life.

My advent anticipates a surety of ending, a timeline shortened by dis ease, with just enough mystery to keep me hanging around to see it through. I have learned Advent’s liturgies and rituals in comforting familiarity. I can predict with great accuracy its prophecies and messages and admonishments and yet, still be surprised by what is to come. Advent inflicts dis ease with the understanding of how human dis ease must be. Yet it insists we contemplate how inhumane and cruel life would become without dis ease’s gifts of growth. It does not matter that we humans have confused the season’s intents, nor does it matter if we make the wrong choices. What does matter is that Advent consistently offers new chances, new challenges, new choices from which we can shrink away with fear or we can embrace with joy in life and death to come.

And just like Mayo, it offers no cure, but excellent dis ease management.