Thursday, November 27, 2008

Chronic Fatigue Syndrome, Christianity, and Culture

I wrote this book review a few years ago, but wanted my readers to know of this sensitive and unique book. I know and love several people who suffer in the ways he describes. I am also wanting to contact Dr. Rotholz, since I lost his email.

James M Rotholz, Chronic Fatigue Syndrome, Christianity, and Culture: Between God and an Illness. New York: The Hawthorne Press, 2002. 141 pages.

This short and insightful reflection is unique and uniquely needed in at least two ways. First, it is a near-miracle that the book exists at all, given the fact that the author was struck down with chronic fatigue syndrome (or CFIDS, chronic fatigue immune dysfunction syndrome) several years before writing it. Those familiar with this cruel disorder know that mere survival presents a challenge to its sufferers. The rigors of writing a book elude most healthy people. Producing a book while imprisoned in a state of chronic fatigue (and its attendant ailments) requires extraordinary tenacity and pluck. Second, the subject matter is (to my knowledge) unique. There are many books on treating chronic fatigue and coping with chronic fatigue and there are a few books that attempt to help loved ones understand this disorder in order to provide intelligent and caring assistance. However, this is the first book to put the experience of chronic fatigue into a larger cultural and theological framework.

There are also numerous books on the problem of evil (of a philosophical and theological bent) and books on the vicissitudes of suffering through evil (of a pastoral and psychological bent). But these efforts nearly always ignore a category of evil and suffering that afflicts millions of people: chronic illness. Those in the vice grip of chronic illness—whether chronic fatigue, lupus, MS, irritable bowel syndrome, or other disabilities—must often endure a double malady. They not only lose their health, their dreams, and any semblance of normal life; they also end up becoming opaque mysteries even to those closest to them. This phenomenon lies in the nature of those chronic illnesses that are "invisible" to the uncaring eye. An invisible illness is one that is real, but not easily detectable visibly. Many who endure the life sentence of chronic illness "look fine" but feel miserable—more disconsolate than can be imagined by those not stricken. Many unsympathetic friends and relatives put pressure on the sufferers to "buck up" or "stop feeling sorry for themselves" and "just get on with life." After all, they are not in a wheel chair, they can see and hear, they have all their limbs, and they don't have cancer. So, what, exactly, is their problem?

Most people can understand and sympathize with episodic illnesses in which the afflicted eventually get better. The bone mends; the scar heals; the pain subsides. These problems require special attention only for a relatively short season; then folks return to normal. Fatal illnesses are tragic, but they have a destination: death. Then the problem ends, whatever grieving remains to be done. But chronic illnesses are neither episodic nor terminal. They stubbornly refuse to heal or to kill their hosts. There are no established protocols for their cure. After exhausting the ineffective options of conventional medicine, the victims are often thrown back on alternative remedies of uncertain value. Symptoms may—or may not—be managed or ameliorated by drugs and treatments. Sadly, some risky procedures desperately engaged end up relieving nothing and only adding new symptoms to the sufferer. This was the case with the author himself, who sought relief in a surgery that only added to his pain and debility.

James Rotholz writes from a place of understanding and wisdom. Trained as an anthropologist, he knows the dynamics of cultural values. As a Christian, he knows that pain and suffering are part of a universe that groans in travail awaiting its final freedom. He further knows that in Christ there is hope and meaning for even the most debilitated human being. As a chronic fatigue victim, he knows the fear, disappointment, anger, and frustration of this dark fate. After his wife fell ill with chronic fatigue, this young professor succumbed as well. (His wife eventually improved.) He was forced to leave the academy, yet try to provide for his family and carve out a meaningful existence in spite of it all. Rotholz tells his story without lapsing into either self-pity or pious platitudes. Those not touched by chronic illness need to listen to his tale—especially pastors and caregivers.

Consider the grim reality as Rotholz explains it:

The disability of CFIDS brings out all that is nasty and negative in one's personality. The illness has a way of making it all but impossible to express those qualities that are admirable in oneself. There is a direct relationship between the way one feels (happy, sad, sick, tortured) and the way one relates to others. In that PWC [people with CFIDS] feel sick so much of the time, it only stands to reason that their interactions with others are often characterized by irritability, frustration, and short-sightedness" (22-23).

Rotholz grants that many believers and non-believers have suffered nobly. Nevertheless, chronic illness is a bitter pill that must be swallowed again and again.

But the kind of mundane suffering that many disabled Americans face is in a way more difficult to bear [than other forms of suffering]. It is the day-in and day-out, unrelenting pain that serious illness and disability often inflict. This kind of suffering requires more than a moment's grit and grace. It requires a sustained battle against a ubiquitous foe, and all too often within the context of ridicule. Even a low level of sustained pain and suffering can be so insidious that, barring God's constant intervention, sooner or later even the most iron will and noble spirit must break. The concept of "Chinese water torture" is based on this understanding of the complex nature of the human psyche (24).

Rotholz's first-person narrative unveils a world of which most people know nothing. It is a world about which many would rather remain oblivious. His account is not an entertaining read. It is not a diversion from the unpleasant, but an immersion into the unspeakable. Those who are ignorant—willfully or otherwise—of the sufferings of others are exempting themselves from part of the human condition that exists east of Eden and prior to the Second Coming. In avoiding knowledge of the experience of pain, such people cheapen their own relatively painless lives.

After two chapters explaining his descent into the illness and his coming to terms with it, Rotholz utilizes his anthropological background to reflect on the larger questions of how American culture responds to and evaluates chronic illness. He explores the American "culture of success" and how it marginalizes the disabled, who cannot perform economically or culturally in the ways deemed worthy.

But Rotholz is not content merely to level accusations at American insensitivity, however needful this is. The remaining chapters present an alternative understanding of worth and meaning before God. Instead of emphasizing material achievement, the Bible calls us to value character and faithfulness. Instead of valorizing the wealthy, the beautiful, and the influential, God calls us to value all people—no matter how lowly—because they bear the image of their Creator. Our ultimate achievements are not quantifiable, but are matters of qualities—qualities of the soul as it rests in and gives glory to God, come what may. Rotholz cites Lynn Vandezalm's book Finding Strength in Weakness, in which she describes "God's sliding scale." God's concern is that we give him what we have, whatever that may be. He is not concerned with how many achievements we rack up. She writes, "Sometimes I'm too sick even to open my Bible for weeks. And yet I'm still loving God with all my strength. And he knows it" (97). God knows the widow's mite, and the disabled person's heart.

Rotholz wrestles with some of the deeper philosophical and theological problems in the concluding chapter, "Called to Dignity." As a philosopher of religion, I was not entirely impressed by his arguments, and noted a tendency toward fideism. There is a wealth of apologetic resources that he could have brought to bear on the problem of evil. However, this is but a small blemish on a significant and needful book. The author, until stricken, was an anthropologist—not a philosopher or theologian. Having been stricken, he has very limited strength for new research. Rotholz finds meaning through his suffering in the wise providence of a sometimes mysterious God. As he notes in the previous chapter, "A New Vision of Success," naturalism offers exactly no meaning or explanation for human suffering. "Any view of human life that is devoid of God must ultimately be dehumanizing, for it means that human life has no real purpose, thus, it is meaningless. Suicide would then become a reasonable response" (101). Only God can give objective meaning and direction to a world suffused with suffering.

Chronic Fatigue Syndrome, Christianity, and Culture will never be a bestseller. Odds are that it won't even stay in print very long. It is not a feel-good, self-help manual. It doesn't tell you how to be "successful" in a worldly way (or how to be successful in a worldly way while pretending to be spiritual). It is not a "success story" as our culture defines it. The author is not a celebrity. Instead, this book tackles a subject most people would rather ignore or forget. But never mind that. By composing a contemplative book on a neglected topic, James Rotholz has won a moral and spiritual victory. His readers will find a story that ends not in despair, but in hope. This is a book for all those who want to honor and minister to a largely forgotten subsection of "the least of these, my brethren"—the chronically ill.

4 comments:

Darrell said...

As the husband of a woman who suffers severely from the chronic pain of fibromyalgia, I am glad that someone is addressing these issues in a Christian context.

I'll be looking up this book for sure.

Thanks so much for this review.

Doug Groothuis said...

I am glad this was helpful and pray the book will minister to you and your wife. There is another book called "Beyond Chaos," written specifically for "the healthy one" married to a chronically ill person. It is not as good at Rotholz's, but has some helpful insights. Further, it is the only book of its kind that I know of--although there are books written on living with a depressed person. As you know the chronically ill are often chronically depressed as well.

See also www.whereisgod.net

pennoyer said...

Doug:

You (and the curmudgeon community!) may also be interested in the following title:

Kathryn Greene-McCreight, Darkness is My Only Companion: A Christian Response to Mental Illness. Grand Rapids, MI: Brazos Press, 2006.

I found this to be a profound reflection on the experience of mental illness. The author not only has suffered with mental illness herself (specifically debilitating depression and bipolar disorder), but is also a trained biblical theologian and Christian minister. I have a short review of the work on Amazon.com.

Ray

The Singing Patient said...

Thanks for bringing this book to light.
I've had lupus for 16 years, and appreciate hearing about the spirituality of others who suffer chronic illnesses.
Yes, it's a neglected topic. All lupus books I find are either full of statistics, symptoms, demographics and "what is lupus," and the lists of standard treatments...

or someone's autobiography on their journey with lupus (which often go into painful detail about their symptoms, with which I am already quite familiar first hand!)

i love hearing about what we think God expects of us, and how we might look through compassionate eyes.