Faith and the Fear of Death
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Confronting our mortality from the lab and the altar
Much of life is a process of grieving — grieving the things we lose along the way, whether youth or beauty, loves or friendships. Eventually, even memories will be mourned. Disease and disability hasten the process, denying us activities that once granted meaning. In the face of this loss, we turn readily to the language of conflict, of winning or losing the struggle against disease. Healing is taken as synonymous with curing, restoring lost abilities or, at worst, preventing further decline. Anything less can sound inferior.
There is more to healing than what is captured by medical narratives and more to disease than just conflict and loss. Few would deny that any sickness beyond the trivial has an emotional dimension. So might we not also speak of the spiritual? To do so is not to excuse the existence of disease, nor to justify suffering in the name of a higher cause, but simply to speak truthfully of the experiences that shape a life — the experiences that can create, and break, purpose and meaning.
Such experiences are often tied to particular places that challenge our presumptions, spur our growth, or bear witness to our diminishment. One such place for me is Kingley Vale, a small nature reserve in southern England. Kingley Vale extends some two miles along and below a broad ridge, surmounted by several Bronze Age tumuli, a type of ancient burial mound. Beneath the ridge, dense yew woodlands and grassy slopes form a steep-sided valley. The chalk hills, or “downs,” as they are known, look out across the coastal plain of West Sussex, on which the meandering routes of recent roads and old tracks alike are revealed. To the southeast, Chichester Cathedral is clearly visible, dominating the city, while directly south are the glimmering waters of the estuaries and inlets that form Chichester Harbour. Along the harbor lie an ancient Roman palace, in the village of Fishbourne, and Bosham’s Saxon church, an image of which is woven into the Bayeux Tapestry depicting the events surrounding the Norman conquest. It is a view upon which I can trace many of my memories — and a view I am unlikely ever to see again.
In the late summer of 2003, my car turns into the parking lot at the foot of Kingley Vale, spitting up gravel. I am thirty-five years old, it has been three years since I have left science to explore other careers, and it will be ten more years until I will be an ordained minister in the Church of England. The lot is deserted apart from one other vehicle to which I pay no regard. No one is there to notice the distinctive smell of homelessness that permeates my clothes and hair. It is an aroma of stale tobacco, sweat, and other less readily defined elements. It is the smell, perhaps, of indifference. I have grown accustomed to it. Stranded between careers, I work in a small day center for those who are not professionally but literally homeless.
I have come to seek peace after news of another young death among our clients. “Made a mess of that!” I quipped six months ago over tea and cigarettes, as he sat beside me, proudly displaying the rope burns around his neck. Now he has accomplished what then he had failed to do, and only the quip lingers, teaching me a lesson in guilt. I carry with me not only the odor of the homeless, but a sense of inadequacy and regret. So I have come with my memory of him, to bring it to a place where other memories of mine already dwell.
From my car, I follow the familiar path, aware that the shadows are lengthening, but thinking that enough light remains to complete a round trip to the ridge that lies only a mile or so away. The arable fields on either side of the path are bare but for the stubble of cut rapeseed. I walk quickly, vaguely conscious of the late hour, and summon a silent smile at the lone dog walker who passes me as he returns to his car. I will be alone in the vale, which is how I wish it. At the boundary of the reserve, I pass through a little wooden gate and pause at a fork in the path. Map boards display a tangle of red footpaths on a green background. Off to the side a small hut lurks, half covered in ivy and brambles. It was, I recall, once filled with dusty cases of stuffed animals, but is now home to glossy photographs and boards exhorting visitors to conserve the living. Both paths lead toward the distant tumuli. The path to the left climbs steadily in a long, sweeping ascent before running along the top of the ridge above. Straight on, the path continues its gentle incline toward the heart of the vale that lies directly beneath the tumuli above.
Among the many memories I have of this spot, one in particular stands out. In the spring of 1981 I was twelve, walking the same route with a half-dozen school friends. At the same fork where I now stand, my peers had begun to press ahead, eager to lose themselves in the woody glades and climb the ridge beyond while I plodded slowly in their wake. I was used to being left behind.
I met them on their descent and joined them as we wound our way back by different routes, discovering the possibilities of “sword fights” with the broken branches that littered the ground. Several dramatic deaths later, but without notable injury, we returned to rendezvous with the drab adult world we had left behind. And I returned, more aware than ever of my physical limits, and more desirous than ever to understand and transcend them.
I was born with a mutation in my DNA that inhibits the production of glycogen-debranching enzyme and results in symptoms known as glycogen storage disease type IIIa, or, more succinctly, GSD IIIa. Typically the condition renders one susceptible to extended periods of hypoglycemia, or low blood-sugar levels. It is exacerbated by exercise and even relatively short periods without food. In childhood it restricts growth and limits muscle development, but with careful management of diet and exercise, improvement during the teenage years can be rapid. At twelve I remained the smallest in my class and school. My liver, once swollen by the glycogen I could not process, had reduced to almost normal proportions, and my muscle strength had begun to respond to exercise. My endurance, however, was still paltry compared to my peers.
In my school years, I was rarely unaccompanied on my walks in the vale. The most frequent of my companions was Doug, with whom I eventually shared five years of school and a series of eclectic interests that included archery and the Japanese art of sword-making. In school, he shammed illness to join me in missing the sports classes from which I was excused, more interested in comparing our newfound vocabulary. We quickly mastered the differing blade lengths of tantō, wakizashi, and katana, and our debates had progressed to exploring the benefits of different shapes of tsuba — the guard between the handle and the blade — when teachers noticed the timing of Doug’s “asthma attacks” and began to question our incapacities.
As my condition gradually improved, I began to participate in certain sports. Cricket was an early favorite, with the long periods waiting to bat or lingering in the outfield providing ample time for debate and daydreaming. Later, I and a small number of friends became enthusiastic cross-country runners. Departing at a prudent jog, I would just make it out of sight of the school gates before coming to a gasping and debilitated stop. After a lengthy pause for me to recover, we would spend a half hour or more ambling around the surrounding footpaths before eventually turning back, breaking into a courageous jog once in sight of the gates. Our timekeeping was poor, and our lengthy absences, particularly on sunny days, led teachers to doubt the sincerity of our passion for running. I resented their intrusion, for it was such unauthorized outings, free from uninvited witnesses or adult oversight, that fostered a belief that the limits of my world were not as narrow as I once envisaged.
Throughout my teenage years I returned often to explore the vale, slowly extending the distance I traveled. I became familiar with the many paths, familiar too with the inhabitants of the woods through which they led. Frozen stares from the woodland edge would monitor my progress as day lengthened into twilight, followed by the clatter of horn on wood as the deer vanished once more beneath the shadows of the trees. Or it would be the melancholy call of buzzards that led me up the valley when the sun was at its highest. Once in the morning hours, I overtook another youth late returning to its lair: a young badger with a bustling swagger.
Such residents were brief tenants in the life of the vale. The true residents paid no more attention to my presence than I to the brightly colored hoverflies that would alight momentarily upon me. An oak, a mere hundred or so years old, acted as herald, marking the turning that ushered the visitor to the ancient yew groves, cloaked in shadow even on a sunny day, where ancient trees erupt from the bare earth, offering gnarled witness to the passing centuries. Walking beneath their massive shadows in summer evenings, or running a hand along their glistening boughs after the autumn rain that transformed mere wood into richly veined marble, it was hard to dismiss the logic of animism.
For many today, nature and wilderness hold greater spiritual significance than God or church. If once the concept of the divine shaped our everyday experiences and the supernatural lurked just beyond the confines of our gaze, now it is often nature that is sanctified and notions of the wild that prowl the edges of our imagination. The Church of England, in which I am now a minister, is often portrayed as a thoroughly domesticated religion, in which faith has been tamed to serve the needs of society, reason, and convenience. In this, it might be argued, the Church mirrors the landscape of England — neither offers much space for the wild.
My own early experiences of church and nature were often intertwined. At the age of nine, I spent my first Easter service staring out of the open doorway of the cliff-top church, craving the glimmer of the waves beyond. I was more captivated by the shadows cast by light streaming through the windows than by what took place within the walls. If it was from within a church that I first perceived the beauty of nature, it was in my visits to the yews that I first understood an instinct to worship.
It is the summer of 1986. We are seventeen. Doug has finished school while I am trying to attain a place in the university to study biology. Whereas I continue to view nature and faith as inherently entangled, Doug has strayed into the less familiar territory of house churches, and now talks of scripture in ways that leave me nostalgic for the times when our religious musings were more likely to touch on bushidō (the Samurai moral code) or the Norse myths than on the Bible. Despite our lives beginning to diverge, we still find occasion to return to Kingley Vale, which remains indifferent to our shifting expectations.
We linger an hour within the yew glades, sitting astride a serpentine bough. Surrounded by witnesses whose age is measured in centuries rather than miserly years, we recount news and share half-formed ambitions and hopes as only youth permits. On emerging from the yew groves, we gaze across the chalk grassland that rises at first slowly and then precipitously to the ridgeline above. It is a ridgeline that lies on the boundaries of my endurance, but which I am determined to reach, if only to convince myself that what we merely imagine can sometimes also be attained.
We trudge slowly across the springy turf, winding between the grass-covered anthill mounds so characteristic of long-grazed chalk grasslands. Purple thyme and the golden blossoms of birdsfoot trefoil add splashes of color to the meadows. Doug strides on ahead, tiring of my slowing progress, and I watch him move across the steep incline. I choose the path of shadows, preferring not to see what lies ahead. Forever unsure what my body will permit, I prefer to cloak my efforts from the gaze of others.
Past an unsteady stile, the path vanishes under the trees and there expires. Across the hard chalk ground, strewn with a layer of stones and woody fragments, the yew trees and scattered pines spread out their dark canopy. I scramble up, regularly resorting to all fours or, levering myself up against the tree trunks, hang from the low-lying branches to grant my legs respite. It is the very difficulty of the climb and the unsure footing of the terrain that aids me, the countless pauses needed to navigate providing my body with the rest it craves. It is when the going gets easier that I struggle, as the woods finally give way to the grass of the hilltop.
The string of tumuli that crown the vale are known by many names, including the Devil’s Humps and the Kings’ Graves. Deep gouges from forgotten excavations scar their sides, and the summits, worn down to bare chalk, form shallow bowls that dip toward the tombs below.
I don’t look beyond my own footfalls as I cross the grassland between the shadow of the woods and the ancient barrows. On reaching the foot of the nearest tumulus, I pause to peer up at the ten-foot-high, densely packed chalk mound. I am dimly aware of Doug above, watching amusedly. There is an acknowledgment of my condition among my friends, without any demand for explanation or name. It is a muted kind of acceptance, yet the only one I require. No explanation would help me climb the ridge any more quickly, and naming my condition would simply suggest it is something other than I am.
My vision is blurring and my chest aches as if sandpaper is lodged somewhere beneath my diaphragm. A light-headedness completes my symptoms of hypoglycemia. I struggle up the mound with small, slow steps, and, as it rounds toward the summit, throw myself down to the earth. I roll on my back and close my eyes to the heavens above. With the renunciation of all further effort, there comes an experience not so much of attaining some deeper truth as of truth reaching out to me.
Claims of religious experience are typically viewed with suspicion by the secular, and sometimes even by the religious. To the former, it implies an ignorance of rational explanation; to the latter, it suggests a dangerous focus on the individual and the emotional. But skepticism has not impeded our fascination with mystical or religious experiences. Aldous Huxley sought it through hallucinogens, and today we probe the minds of Tibetan monks using magnetic resonance imaging to reveal distinctive patterns of brain activity during meditation. Other studies have attempted to identify those areas of the brain associated with religious faith, prayer, or other aspects of the spiritual — as if grounding it in the material will either explain the spiritual away or render it more real.
In the opening chapter of The Varieties of Religious Experience (1902), the psychologist and philosopher William James critiqued the “medical materialism” of his day that, by diagnosing Saint Paul an epileptic and Saint Teresa a hysteric, thinks it has eradicated religious and spiritual significance from their experiences. James argues that it is “quite illogical and arbitrary” to try to use the material causes of spiritual states of mind to refute their content, “unless one has already worked out in advance some psycho-physical theory connecting spiritual values in general with determinate sorts of physiological change.” In other words, because for the most part we don’t know how bodily processes relate to thoughts, the identification of their potential material causes cannot of itself undermine any greater significance. And this is as true of brain science today as it was of psychology a hundred years ago.
As I lie upon the downland ridge — “downland” is the local term for this type of chalky countryside, deriving from the Old English term for “hill” — I can dismiss my experience as the byproduct of my medical condition, without need for further reflection or meaning. Yet my tired limbs have led me to a threshold where the world is experienced with a clarity and a purpose that hitherto has eluded me, a threshold that hints at further revelation and where time seems briefly caught in a web of eternity.
Several years later I would find solace in another observation of William James that “few of us are not in some way infirm, or even diseased,” but that our weaknesses might sometimes render us more receptive to certain experiences of spiritual significance. After all, religions have long cultivated practices of meditation and prayer, fasting and self-denial that make the individual more receptive to the promptings of the divine. Might not the state of my exhaustion be akin to that which James describes, when “the will to assert ourselves and hold our own has been displaced by a willingness to close our mouths and be as nothing in the floods and waterspouts of God”?
Talk of spiritual or religious experiences is not just prone to being reduced to medical causes, but is also haunted by cliché and the inadequacies of language. As Christian mysticism has long recognized, the transcendent tends toward the inexpressible. And as Coleridge wrote, it was through poetry that Wordsworth sought “to give the charm of novelty to things of every day … by awakening the mind’s attention from the lethargy of custom, and directing it to the loveliness and the wonders of the world before us.” Maybe it was the rhythms of disease that awakened my mind to the same.
The aches of my starved and damaged muscles lingered several days after climbing to the grave mounds. It was, I decided then, a sacrifice worth making.
For the next eighteen years I would strive to walk to those places where the endless narratives of my mind would cease and where I could sense a greater harmony with the world. Like an addict chasing a spiritual high, I found the places I sought along the paths that climbed the downland slopes, the places where my body no longer responded to the urgings of the will.
Once, I found such a place on a May afternoon in a grassland sward, dusted with cowslips, in which I sank down and lay amid the nodding golden heads soaking up colors blurred by fatigue, without any filter of the mind. Closing my eyes, I lost myself to a world where all that existed was the percussive drone of insects and the melody of a skylark.
Another place was a frost-hardened hollow along a woodland slope in January, by which I first sat staring at the chalk-flecked mud that clung to my boots, then lay back to find myself entwined with the hatching of barren beech branches reaching up toward the sky above.
Immersed in moment, I would forget the pain of getting to these places, the dizziness and nausea, the stumbles and falls that habitually accompanied the flood tide of my exhaustion. I found myself, if not a cure, at least a place where I could be reconciled with my disease and view it as a blessing as much as a curse. That in itself was a kind of healing.
It is only now, many years later, that I question whether the final price to be paid was worth the experiences it brought — now, when the graves once more lie beyond the shrinking boundaries of my world, and all I have are the memories.
At age thirty-five, over twenty years after my first walk in Kingley Vale, I hesitate at the fork in the path. Looking down the path that leads to the yew glades, I recall how, despite their aura of immortality, the trees have not remained untouched by time. The old oak is gone — the uprooted hulk of its carcass lies submerged in brambles and nettles, slowly returning to the soil. Whereas in my youth the groves seemed full of somber majesty, now they feel fragile and decrepit. The many storms of the past decades that broke limbs and fractured trunks have bequeathed a sense of decline.
Time has also revealed how the most ancient of lives are shaped by experience and by change. Where once I marveled at the trees’ age, now I marvel at how their identity has changed, as one trunk shattered into two while boughs have twisted and merged together. New growth emerges from ancient roots that, beneath the soil, may all be one.
My limbs are already weary and I am lightheaded. Dimly I acknowledge that I have little chance of making it up the steep climb from the glades to the ridge beyond. It is a day for pragmatism and the easy route, not for chasing after ephemeral sensations of the divine.
As I tramp up the long ascent of the left-hand path, I forget the young man whose death led me here. I forget too my inadequate lunch and the late hour of the day. I forget how I have grown accustomed to my disease, which has bred indifference and the assumption that nothing will change. If grateful for the experiences I’ve had, I begrudge the limitations my condition still places on me.
By the time I emerge onto the downland sward covering the summit, as I have done so many times before, I can hardly see through the explosions of yellow and orange that obscure my vision. My own personal firework display bears witness to plummeting blood-sugar levels, if any indicator were needed other than shaking limbs, a staggered gait, and cold sweats.
Hypoglycemia is rarely the traveling companion of good judgment. All that matters to my fevered mind is to reach the Bronze Age barrows. Then I can rest — and with that rest will surely come the energy for the descent.
Stubbornness and delusion bear me to the top of the nearest barrow and there cast me down. I lie staring at the sky, experiencing a wave of relief as my mind rescinds all demands upon my body. Gray clouds are ushered across the sky by a cooling breeze that soothes my aching limbs and lifts away all cares and thoughts. I close my eyes and abandon myself to dream.
I awake, but not to a sense of peace or renewed clarity, nor to any euphoric sense of oneness with the world, but rather to darkness, cold, and nausea. The afternoon sun has vanished and dusk is fast receding into night. I must have lain upon the barrow an hour or more already — an additional hour without food or sustenance by which my body might recover.
There is a fine line when we slip from consciousness into unconsciousness. Normally as we approach this line, rational thoughts and sensory inputs fade as muscular coordination and strength fail. Sometimes, however, there is clarity right up to the point where we step into oblivion; but it is a fragile thing requiring a deliberate effort to maintain, like tacking an unwilling vessel into an ever-shifting wind. Lying there upon the barrow I sense the edge of consciousness is close and my reason is precarious, though for the moment still clear.
I have no mobile phone, convinced they are passing fads and an unnecessary encumbrance. Systematically, I search every pocket for a crumb of food or a forgotten snack, without result. I sense a dilemma. To remain where I am would clearly minimize physical effort, but to what end? The chances of a nocturnal walker from whom I could beseech some form of help seem unlikely. Could I survive a night? Probably, but I fear what may lie on the other side of the dark.
There are a host of metabolic pathways available by which our bodies can generate the energy required to maintain life, consciousness, and mobility. I lack a major pathway by which we extract energy from the breakdown of glycogen to glucose. But I know there are alternative, if slower, biochemical pathways. If no food is digesting, stored fats or my own muscle protein, though less readily extracted, can be broken down to provide the energy my body craves. Yet lying on that barrow, staring into the darkness, I sense something has changed. I can no longer rely on past experience of my body, nor can I simply lie upon a mound and allow my body to consume itself in the fragile hope of acquiring the energy to rise again.
So I must descend. And every passing moment requires energy. I see a mathematical equation with which one might calculate the optimal balance between expending energy in a rapid descent that risks ending in collapse, and expending energy more slowly but requiring more overall, risking never arriving at my goal. I push the thought away as unhelpful.
Instead, every step of the descent is calculated by my weary mind to minimize the effort involved — every undulation of the ground assessed, and a route plotted to smooth away the rises and falls that would increase the expenditure of effort on maintaining my balance, buffering my joints on a downhill step, or levering myself up an unnecessary gradient. The timing of every step and pause is shaped by the faint, uncertain beat of my body’s needs.
At times I abandon the effort and sit in the grass, carefully weeding out fragments of wild thyme and oregano from the downland turf to consume them in the hope that they might provide a little energy, wishing I had paid more attention to my lessons in chalkland plant taxonomy. Rabbit droppings and tree bark are all assessed as potential sources of nourishment.
Four hours after I left my car, I return to it again. From the driver’s seat I look out feverishly at the darkening woods and wonder if this day has been awaiting me: the apogee of all my chasing after fleeting experiences and imprudent testing of limits. I recall the aging yews, and wonder if it is time for my decline.
From the book of Job to St. John of the Cross’s Dark Night of the Soul, Christian spirituality has recognized that faith is no guarantee of a joyful experience of the divine. The limits of eternal cheerfulness and optimism are evident to even the most blessed of lives.
Faith struggles to perceive the divine within, and not without, the brokenness of the world. As a Christian minister I find myself leading prayers of healing for the sick, but rarely do I lead thanks for the revelations disease might offer. To suggest meaning in misfortune, I fear, risks making excuses for suffering.
When I am tempted to view the sick as simply a problem awaiting resolution, I am not alone. Many modern spiritualities extol a harmony of body and spirit, presuming a healing of both is readily achieved. So too the insights disease might afford hold little interest to a world in which we spend billions seeking to conform with the orthodoxy of a healthy mind and body, and billions more on sustaining life by a few more months. That disease can provide insight is a heretical thought.
It is winter’s end in 2016 in Cornwall, some two hundred miles west of Kingley Vale. I stare out across the estuary where the striated blue of the water encounters a pale line of sky, brightened by reflection, above which lies pure, monotone blue, marked only by the newly cut scars of contrails. Rolling Cornish hills cascade down to the estuary, with dark woodlands along the water’s edge. It is a morning that invites response — invites me to shake off my gloom and stride over the grassy field that stretches out ahead of me, seeking the curve of the slope as it dips toward the shore.
It has been several years since I last walked the summit of Kingley Vale. A decline that began sporadically and unpredictably has become routine and monotonous. First it was simply a loss of strength and endurance in certain muscle groups. Later, these conspired to impede the spiritual experiences I once sought in nature. Hypoglycemia is something I now mostly only remember as a distant experience of reaching goals that my wasted muscles are no longer able to carry me toward. I am weary all the time, but never exhausted.
By provoking hypoglycemia after even modest physical activity all these years, my disease allowed me to experience the exhaustion of the long-distance runner without having to travel the distance. It is the pursuit of such experiences that may well have contributed to my present state. Although the causes of progressive loss of muscle function, or myopathy, in adult patients with GSD IIIa remain uncertain, the buildup of unmetabolized glycogen within muscle and nerve cells is a likely cause. A slowdown in the ability to generate new cells, which is a consequence of age, speeds up the decline. Perhaps, then, my very determination to seek moments of exhaustion hastened the damage and loss of function I now experience. Perhaps. Mercifully, the science remains unsure.
I do not resent the everyday tasks that now take up so much time, and for which I am increasingly dependent upon the charity of others. Nor is it simply the sensations now lost to the past that I mourn, but rather my inability to respond to the invitation this morning brings. Where once I would have dismissed any need for a cure, today I would readily seize the opportunity. In reality, I know there is little chance of one in my lifetime.
I am now hardly able to walk and, as I remember my treks of the past, I ask myself, “What value do I now ascribe to those experiences that offered a semblance of the divine?” We all face the challenge of ascribing value to our lives and to the world around us — value that others might readily dismiss or that we might later ourselves be tempted to deny. From relationships that turn sour to the physical ailments that deny us the activities we once cherished, it is always tempting to rewrite the past or deny meaning to what we no longer possess. If I climb the ridge of Kingley Vale now only in memory, I hope I will never deny the significance I once attributed to the moments gifted me by disease.
Over time, I will find new ways by which I may respond to the invitation of this world and ascribe new value to my experiences, whether it is a brief encounter with the wild or a glimpse of the divine. If I can no longer go out to seek them, I can linger in the hope they might come to visit me. This can at times seem a fruitless preoccupation. So too can speaking of God in the language of Christian liturgy, or ascribing economic value to ecological insight.
Looking out over the distant estuary, I recall lines from the Scottish novelist and poet John Burnside:
the logic of the wilderness that says
where nothing seems to happen
all the time
what happens is the chance
that something might.
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Encounter in the Vale