Reflections on a Simple Twist of Fate: Literature, Art, and Parkinson’s Disease

Copyright © 2018 Constantine E. Scaros.

All rights reserved. No part of this book may be reproduced, stored, or transmitted by any means—whether auditory, graphic, mechanical, or electronic—without written permission of the author, except in the case of brief excerpts used in critical articles and reviews. Unauthorized reproduction of any part of this work is illegal and is punishable by law.

Scripture taken from the King James Version of the Bible.

ISBN: 978-1-4834-6925-6 (sc)

ISBN: 978-1-4834-6926-3 (hc)

ISBN: 978-1-4834-6924-9 (e)

Library of Congress Control Number: 2017907354

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Lulu Publishing Services rev. date: 06/15/2018

For Emily and Alexander

Author’s Note

I originally intended this book to be read primarily by people who, like me, are living with Parkinson’s disease. My plan was to make it available exclusively in the waiting room of the Neurological Institute of Columbia Presbyterian Hospital in New York alongside the usual literary assortment found in such places. As the book began to take shape, however, it became apparent to me that the issues I was writing about were not unique to those of us with Parkinson’s. They applied in equal measure and with equal urgency to almost anyone afflicted with a life-threatening illness. Faced with traumatic diagnoses, human beings, it seems, confront the same demons and angels.

Therefore, the structure of the book reflects my original intention of making it available in a medical waiting room. Chapters have been kept short and self-contained, and liberal use is made of illustrations to enhance the text so that whole sections can be read in a short time. And since the book is organized as a compendium rather than a sequential narrative, the chapters need not be read in tandem.

The title page of each chapter includes a copy of a painting or photograph accompanied by selected prose or poetry. The painting and the literary selection relate to the subject of the chapter but not necessarily directly to each other. They are each meant to be thought-provoking in their own right. I hope that the reader will derive as much value from these selections as from the text itself.

Preface

The compensation of growing old, Peter Walsh thought, coming out of Regent’s Park and holding his hat in his hand, was simply this; that the passions remain as strong as ever, but one has gained—at last!—the power which adds the supreme flavour to existence—the power of taking hold of experience, of turning it round, slowly, in the light.

—Virginia Woolf, Mrs. Dalloway¹

On the waiting room wall of the Columbia University Neurological Institute’s Department of Movement Disorders in New York City, there once hung a painting created by a person with Parkinson’s disease, an upstate business owner. Nearby was a collection of his poetry. The painting, which was titled Frozen Face, was designated as a self-portrait of the artist, his face wrapped mummy-like in a rust-colored winding cloth. As a pair of startled eyes peer through the shroud, the effect is macabre, but to anyone with Parkinson’s, the reference is clear. Parkinson’s eventually causes rigidity of the facial muscles, which can lead to a permanently expressionless face, a condition known as masking. Thus, some people with Parkinson’s can’t smile. They endure the irony of losing to their illness a faculty that might otherwise help to mitigate its effects.

The painter of Frozen Face is expressing one aspect of his struggle with the disease. Contained in those haunting, thunderstruck eyes is the bewilderment many of us feel when suddenly faced with serious illness. My chance encounter with that painting led to the writing of this book.

While I am obliged to that businessman who unknowingly encouraged my own creative efforts, this book takes a very different approach than his project. More about that in a moment. First, it’s important to make clear what this book is not about.

This is not a chronicle of personal struggle, although my own experience with Parkinson’s naturally informs what I’ve written. Nor does it deliberately aim to be inspirational, though I hope parts of it will inspire. The book offers no direct advice but advice can certainly be inferred from it. And while it invokes the Bible as it does other works of literature, its voice is agnostic and secular. Least of all is this book a how-to guide for coping with Parkinson’s disease or a quick read for "dummies" looking for a primer on the subject. There is no survey of relevant medical research here, no personal memoir, and no advocacy.

This book has a different purpose. It is to consider through the lens of great literature and art issues that are important to us as we try to come to terms with progressive, debilitating illness. These issues are not physical or clinical (we have doctors for those). Rather they concern the ways in which we think and feel about our experience and how we choose to deal with it.

Understandably, such an approach might prompt the question, What does literature or art have to do with Parkinson’s disease or any other illness? The answer is … nothing and everything.

On the one hand, no illness, least of all Parkinson’s disease, is an abstraction. Being ill is all too concrete, immediate, and disruptive. In Illness as Metaphor, Susan Sontag warns against viewing illness as representing something other than itself. … the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking.²

There is a relentless physical immediacy to being chronically ill. Many illnesses—especially Parkinson’s—never let you forget they’re there. There is a certain impudence to their persistence. And most of us are all too familiar with the limitations of medical science. Science gets you just so far, and in the area of neurological diseases, it is rarely far enough. In neurology drugs are largely palliative rather than curative, and they often exact a heavy price in other aspects of our well-being. But despite the gravitational pull of the disease itself, most of us manage from time to time to turn our attention away from its physicality and try to come to terms intellectually and spiritually with what is happening. We then discover that we are not alone.

All of the issues we face have been expressed with great artistic sensibility and insight, affording us the opportunity to better understand and gain a measure of wisdom about our experience. The discussions of literature and art in this book are not academic. The works being cited were not chosen because they qualify as some sort of wisdom literature, although the reader will find a decided bias toward the classics, which have had much to teach and illuminate. They were selected because they seem relevant, beautiful, provocative, and in some ways, helpful. They are touched upon lightly and only for the purpose of illuminating aspects of living with serious illness.

Great art and literature are always subversive. They shed light on life’s darker corners and transform us in subtle ways. We do not learn from reading literature or looking at a painting the way we learn from other experiences. Rather we are affected in the same way that we are affected by our environment or our families—profoundly but imperceptibly. After a teenager reads Salinger’s The Catcher in the Rye, for example, the chances are that he or she is altered by the experience in significant but not necessarily obvious ways. Something about Holden Caulfield, something he did or said in that space between the written page and the human mind, touched that teenager’s sense of self and changed it forever. This book is meant to be subversive. Its method of provocation is to draw upon some of the best of what has been thought and written and examine our current circumstances through that prism.

"Chinese Horse", Prehistoric Cave Painting, Lascaux Cave,

Courtesy Art Resource, NY

The search for meaning through artistic expression has always been a fundamental and uniquely human impulse. The astonishing cave drawings of Lascaux, Chauvet, and Altamira testify with great eloquence to the human instinct for symbol-making and our age-old search for understanding through creative experience.

Myth-making, too, was an early means by which human beings made sense of things. There is no culture on earth that has failed to construct a mythology, and themes and narratives often exhibit startling similarities across cultures. As Joseph Campbell observed, When I began to read American Indian myths, I found the same motifs there that I was being taught by the nuns in school—creation, death and resurrection, ascension to heaven, virgin births.³

Consider as one case in point a parallel view regarding divinely inspired prophecy held by two very different cultures, namely that of ancient Greece and the barbaric Celtic world to its north.

According to ancient Greek myth, Zeus released two eagles, one from the east and one from the west. They came together at Delphi, which was then declared the omphalos, the center of the universe and the threshold to the world of the gods. For hundreds of years, the ancients consulted the oracle at Delphi on matters as mundane as marital squabbles and as momentous as war and peace. For them, Delphi was the gateway to a higher plane of understanding.

An analogous mythic portal found expression in Celtic mythology. In Celtic myth there exists the notion of thin places. Thin places are where the visible and the invisible world come into their closest proximity. To seek such places is the vocation of the wise and the good, and those who discover them find the clearest communication between the temporal and the eternal⁴ The oracle at Delphi was such a place, as are Stonehenge and countless churches, temples, and sacred sites throughout the world.

Harvard theologian and Bible scholar Reverend Peter Gomes suggests that thin places are not limited to shrines. They may also include experience. In particular, illness may bring us closer to such places. Perhaps, Gomes suggests, we can adapt the concept of thin places to the experience people might have as they encounter suffering, joy and mystery, and seek in some fashion to make sense of that encounter.⁵

As we live with serious illness, we may be in that thin place the Celts imagined where experience is intensified and we are closer to illumination. Emily Dickinson, who may or may not have known of Celtic myths, nonetheless sensed the possibility of a brightening even as a light dims.

By a departing light

We see acuter, quite,

Than by a wick that stays.

There’s something in the flight

That clarifies the sight

And decks the rays.

—Emily Dickinson, "By a departing light"⁶

This book is an invitation for those living with Parkinson’s and other life-altering illnesses to reflect on what is happening to us. Parkinson’s often takes words away by impairing our cognitive function. This book attempts to take some back. Through reflection and the liberating power of art, we can make better sense of our encounter with illness and gain a greater measure of solace and even happiness. And—to paraphrase a celebrated literary critic who himself faced a serious disease—through reflection we might keep ourselves from falling out of our lives into our illness.⁷

Dean Scaros

Ridgefield, CT

Summer 2018

CHAPTER 1

Why Me?

Abraham and Isaac, Engraving for Bible, CCI The Archive at Art Resource, NY

Tyger, Tyger burning bright,

In the forests of the night:

What immortal hand or eye,

Dare frame thy fearful symmetry?

—William Blake, The Tyger¹

When faced with misfortune, a person might well ask, Why me?

A person of faith does so with the presumption that there is an answer but understands that it may not be forthcoming. Atheists, too, ask the question, even though they know full well no divinely inspired explanation exists. In both cases the question is asked rhetorically more as a lament than a real query. To the faithful, God’s ways are inscrutable, His judgment infallible, and His voice silent. The answer simply lies in God’s plan, which we cannot know. To those who do not believe in a divine being, the universe has no voice or thought or intention. There is no plan.

But those of us whose faith is less certain or whose disbelief is less absolute also ask the same question, Why me? We get the same answer—silence.

Unless we are satisfied with the indefinite explanations of science, we mostly find that the answer is simply that there is no answer. Each year 2 percent of the population develops Parkinson’s disease. Yet it is also the case that each year nearly 100 percent of the population develops something. Many will experience kidney failure. Hundreds of thousands will find they have cancer. Millions will discover a harmless rash, and a few will be struck by lightning.

Although the facts might seem to point to an indifferent universe, we are human after all, and our nature is to regard ourselves as existing at its epicenter. When things happen, they seem to happen to us, and if they’re happening to us, there is an element of intention about it. And if what happens is illness or catastrophe, we readily imagine a malevolent force as the source of that intention. In Lord Jim, Joseph Conrad’s novel of a sea captain caught up in the consequences of a moment of moral weakness, Conrad captures the notion that there is something indefinable that has an evil hand in our destiny.

Only once in all that time [Jim] had again the glimpse of the earnestness in the anger of the sea. That truth is not so often made apparent as people might think. There are many shades in the danger of adventures and gales, and it is only now and then that there appears on the face of facts a sinister violence of intention—that indefinable something which forces it upon the mind and the heart of a man that this complication of accidents or these elemental furies are coming at him with a purpose of malice, with a strength beyond control, with an unbridled cruelty that means to tear out of him his hope and his fear, the pain of his fatigue and his longing for rest: which means to smash, to destroy, to annihilate all he had seen, known, loved, enjoyed, hated; all that is priceless and necessary—the sunshine, the memories, the future—which means to sweep the whole precious world utterly away from his sight by the simple and appalling act of taking his life.

—Joseph Conrad, Lord Jim²

The truth may be, of course, that no such malevolent force exists and that it is only the natural self-centeredness of human beings that leads us to imagine otherwise. In the absence of such a force or controlling entity willing to explain itself to us, a reasonable conclusion is that no die has been cast, no destiny fulfilled, no justice served by our particular circumstance. We are afflicted because we are. There is no clear logic for what befalls us. There is only the fact of it. Time and chance happeneth to [us] all.³

Nonetheless, Conrad seems to feel otherwise. He echoes the book of Job in its affirmation not only of the existence of evil but of its active intentions as well. Early on in the book of Job, there is a convocation of God’s minions very much like a king holding court. Satan is in attendance and has this remarkable exchange with God.

Now there was a day when the sons of God came to present themselves before the Lord, and Satan came also among them. And the Lord said unto Satan, Whence comest thou? Then Satan answered the Lord, and said, From going to and fro in the earth, and from walking up and down on it.⁴

There is something spectacularly ironic if not comedic in the image of Satan simply wandering about the earth as if he were on a Sunday morning stroll, considering the magnitude of the havoc he wreaks on mankind. The exchange between God and Satan turns out to have dire consequences for Job, who—very much like each of us—is minding his own business. God asks Satan if in his walking to and fro in the world, he has taken note of Job, a perfect and upright man, one that feareth God and escheweth evil.⁵

Clever dialectician that he is, Satan acknowledges that he has, but faithfulness, he argues, would be expected of one who, like Job, has enjoyed every blessing God could bestow on a man. Satan asserts that misfortune would expose Job’s true character and cause him to curse [God] to his face. God accepts the challenge of finding out (or more accurately, allowing this challenge to move forward), and Job famously becomes the human battleground upon which goodness and piety vie for supremacy over evil and faithlessness.

Job loses everything—family, health, and wealth. God acknowledges that in testing Job with all manner of calamity, he has been moved by Satan against Job without cause. Thus, if Job is regarded as the archetype of the human condition, we must resign ourselves to the fact that catastrophe will almost certainly come to us sometimes unexpectedly and wholly without cause. However, like Job who does not waiver in his faith despite enduring unimaginable calamity, we, too, have a miraculous capacity to remain steadfast.

Misfortune visited Abraham differently in the form of a command from God to sacrifice his only son, Isaac. Like Job, Abraham did not ask, Why me? He simply packed up and took his son to the designated place in the mountains of Moriah. At the moment he lifted the knife to kill the boy, an angel of God called his name, Abraham! Abraham! to which he answered, Here am I.⁶

Here am I is among the most consequential utterances in the Bible. It is first and foremost a declaration of unconditional faith. But even more remarkably, it dramatizes Abraham’s spiritual strength as rooted not only in blind faith but in his freely