Ringbearers

Sacrifice. The idea evokes images of parents working long hours, taking extra jobs, living in a small cheap apartment to provide better opportunity for children. Or perhaps a soldier taking the point on patrol – walking out ahead of the others. If he takes a hit, the others have a better chance to find cover. Sacrifices like these we readily recognize as willful. We appreciate and honor them.

Is there such a thing as unchosen sacrifice? Could loss of health, possessions, sanity, or future dreams be called sacrifice, regardless of the intentions of the person affected? What about tragedy that visits people randomly, the effect of chaos in this world?

A comparison between two 4-year-old boys comes to mind. A family story tells how my father as a pre-school child darted into the street just ahead of an oncoming automobile. It was in the early 1920s; nobody had much experience then with automobiles in Oxford, Mississippi. As his terrified babysitter Mary led him back to the house, he shouted excitedly, “I did it! I did it! I beat that car across the street!”

A generation later in the same town, Mitch Bergland was not so lucky. He and I were the same age, and he might have become my best friend, but he suffered a brain injury when a car hit him on the street where we lived. My older brothers told me, “Mitch lost half his brain. He’s trying to learn how to walk again.”

Was that caused by a bad choice made by a 4-year-old child? If so, can it explain an outcome so horrific as a lifetime of disability? And if two 4-year-olds make the same rash choice, one moving on to a life of great achievement and the other to a limited life requiring help at every turn, how do we rationalize the difference?

Some things happen randomly. Explain it, if you will, by trusting your fate to a roll of dice.

Once in a while something remarkable happens. A person afflicted by random catastrophe – whether accident, act of nature, illness, or genetic incapacity – decides to do the best she can with the life allocated to her. Constricted circumstances, imposed upon her without a grain of fairness or justice, she chooses not to cry over or at least not to go on crying bitterly, but to embrace what is, to discard what might have been, and to make the most of what she has.

Nurses and doctors see it happen repeatedly. I recall Boris, hospitalized for yet another infection originating in his paralyzed bladder. In his 50th year he had suffered two major strokes. He can hear and understand, but cannot speak. He lies in the bed motionless, needing help to roll from side to side and keep the skin on his back side supplied with blood flow. You have to look to his right hand, upward motion signifying yes, downward no, for answers to your questions. “Do you have any pain today, Boris? Did you sleep okay?” His wife Tanya has stayed at his side for 3 years now and counting. We hope this infection can be treated quickly, she says. We do so much better when we can sleep in our own home and get out occasionally to a nearby park.

From internship days I remember Mindy Gee, also almost completely paralyzed by multiple sclerosis, a “frequent flyer” in the hospital with infections. We heard that she had friends, even a husband somewhere, but I don’t recall ever seeing a visitor at her bedside. Our medical team tried to supply just a little social contact and support.

I wonder if she understood our hesitancy, shyness, inability to get beyond rote medical training. On early morning rounds the intern must declare each patient “Oriented x3” or not, depending on the patient’s answers for name, location, and at least the year.

“Where are you, Ms. Gee?” I asked. Her answer came quickly,

Ringbears Mindy Gee 2

People with multiple sclerosis sometimes speak with a rising and falling, sing-song rhythm. Paradoxical euphoria sometimes takes over. But I really think she used those traits to tease us, to have fun with us. She was our favorite patient.

When a major medical journal put out a call for essays on genomic medicine, I decided to write about the human impact of randomness in genomic events. Morgan Guyton (our son), a Methodist minister and blogger-writer, gave advice and eventually contributed to the manuscript as a co-author. We were excited about the topic, and I shared the developing manuscript with several friends. When 2 wide-circulation journals had replied no-thank-you, we filed it away.

Several months later Nicola Sirdevan with the National Lipid Association asked if we had ever published the manuscript I had shown her. The NLA newsletter was preparing an issue on genome science and illness. She thought that our essay titled “Ringbearers – A Hobbit’s Look at Genomic Medicine” would fit the theme.

Our essay discussed random sacrifice from the point of view of arbitrary genomic events. Here is the opening paragraph:

Life turns on a wheel of genomic roulette. Through evolution the human species wins, while individuals of the species often lose. The new field of genomic medicine, currently featured in this issue of Lipid Spin, opens the toolbox of evolution to improve human health, but it also highlights the harsh role of chance in life. What response can we give to our patients’ unanswerable question “Why me?”[1]

We connected examples of random sacrifice I had personally witnessed with Frodo Baggins, the diminutive hero of J.R.R. Tolkien’s The Lord of the Rings.

How did Tolkien and Frodo come to mind? Maybe it had to do with genes and the variety of life forms exhibited in Tolkien’s trilogy. Maybe I connected mentors in my personal and professional life with the kind wizard Gandalf. Or maybe it was one particular patient who stood 52 inches tall, walked with an uncertain gait, and flashed a diamond smile. She had a genetic disorder that led to brilliant life and to death in her 20s.

The first patient described in the essay was that girl. Another was a young woman who knew about her inherited high cholesterol from a young age and still developed coronary heart disease before she even started her own family. Familial hypercholesterolemia (FH) is one of the most common serious Mendelian[2] genetic disorders currently recognized, affecting 1 out of 250 people of all ethnicities worldwide. You can read 12 personal stories on the website of the FH Foundation.

We presented 2 more patients in the Ringbearers article –

Elizabeth has battled metastatic breast cancer now in remission…. Elizabeth’s tumor was submitted to gene expression profiling, hoping to achieve tailored cancer therapy. In cancer cells, evolution moves at hyperspeed. Multiple genomic hits generate the tumor. After treatment, relapse is governed by further mutations among surviving cells. Unlike classic genetic disorders where the course is set from birth, in cancer the patient must replay genomic roulette again and again.

Jacob has schizoaffective disorder currently stabilized on antipsychotic drugs. Diabetes and high triglyceride developed as his weight ballooned. With dietary control, weight and metabolism improve. In the human brain, evolution reaches its apex. Yet this incredible organ of fine-tuned complexity may be especially vulnerable to small genomic interactions. Randomness hits the person with mental illness doubly hard. The defect not only disrupts life, but also undermines the very capacity to understand and adapt. Remarkably Jacob expresses gratitude, as he walks a narrow line between medication and hunger.[3]

Bad things happen randomly in our world. Is randomness part of the overall fabric, woven into the demands and limits that largely determine what happens in our span of life? It seems to be. But if life has a purpose, could randomness form part of that purpose? Could randomness actually be good?

The gains of random events and evolution are bought with a price paid by those mentioned above and many others whom we know, but not by all of us and certainly not equally. Theirs is an unwilling, unwanted, unfair sacrifice. How can we understand its meaning?

(Just a note about evolution before proceeding further: Genomic medicine can’t be understood apart from the context of evolution. The reluctance of some conservative Christians to accept evolution probably stems more from evolution’s theological implications than it does from literal Biblical interpretation. The Bible is far more compatible with science than some have argued.[4] But the idea of randomness in evolution seems to contradict God’s omnipotence, love, and control. Humans know all too well that random events can hurt, as in the examples above. With Biblical support one can propose that God ordains randomness in creation in order to establish space and distance from God, depicted as a wilderness in which human freedom can emerge. In an earlier blog I described how the epic poem of Job presents a powerful creation story based on this theme.)

Now to Tolkien’s tale: Frodo the hobbit received from his uncle Bilbo an enchanted ring of beauty, desire, and overwhelming evil power. Stronger and nobler creatures such as men and elves succumbed quickly to the influence of the ring. Common hobbits could resist its power. As the wizard Gandalf and others gradually explained to Frodo, he would have to carry the ring into the enemy’s territory, pitiless Mordor, and destroy it in the volcanic fire from which it came. Only by this heroic quest could Middle Earth be saved from cruel subjugation.

The ring brought pain, suffering, and early death to Frodo. Here is a very brief summary of his journey, as told in the Ringbearers essay:[5]

Early on, Frodo suffered a grievous wound from a poisoned knife. His recovery required all the medical skill of the elves. In the house of their leader Elrond, Frodo heard definitively that only he could carry the ring.

Elrond raised his eyes and looked at him, and Frodo felt his heart pierced by the keenness of his glance. “If I understand aright all that I have heard,” he said, “I think that this task is appointed for you, Frodo; and that if you do not find a way, no one will.”[6]

 At the boundary of Mordor, only one companion could go farther with Frodo – Sam Gamgee, the son of his gardener. Sam supported Frodo as he nearly died again from a monstrous spider’s sting and then a third time from the heat of a volcanic eruption. Frodo eventually returned to his home a celebrated hero, but his wounds never healed. The story ends with Frodo’s departure for heaven, after living one-third of a hobbit’s normal lifespan.

Can we suggest that Frodo exemplifies those who are afflicted by chance events? First, he is chosen unexpectedly to accept and carry a life-changing burden. When he inherits the ring from his uncle, it emits a penetrating harm that intensifies and finally shortens his life. But Frodo saves his world of Middle Earth, as he freely chooses to carry the ring into Mordor. Does something similar happen in the lives of those we know who are stricken by random tragedy?

The essay offers a very tentative interpretation:

Humans evolve in a wilderness where natural law confronts untamed chaos. As conscious thought emerges over millennia, humans begin to ask questions: Why do some suffer and others not? Is it all worthwhile? Those with genomic illness often say they just want to live a normal life. This ordinary desire, expressed heroically, overcomes unfairness and affirms for all the value of life.

We usually think of evolution as the healthy surviving and reproducing more successfully than the unhealthy. But Simpson in the last century remarked that in humans evolution becomes “subject to conscious control” and that a “new form of evolution works in the social structure, as the old evolution does in the breeding population structure.”[7] Think how the paradigm is transformed, if we consider that humanity develops as a family, not as isolated individuals. Consider what we call progress – is it not reflected in how a society interacts with its most vulnerable members? Our hope as a species depends upon the dignity with which we treat people today who might have been left on a hillside by a Neolithic tribe, or confined to institutions 50 years ago.[8]

The notion that “Humans evolve in a wilderness where natural law confronts untamed chaos” comes straight from the book of Job, chapters 39 to 41.

Our afflicted friends, patients, and fellow humans do not choose their random appointment in life,

 . . . but they choose how to bear it with bitterness or grace, with courage or despair. In choosing life to the fullest extent possible, they teach the rest of us how to live. Regardless of how they respond, when we treat them with honor, we evolve as a people.

Like Frodo, these friends and fellow humans are ringbearers

The comparison deepens if we notice that often very few people witness their affliction, much less their courage. Those who are truly close [to them] have their counterpart in Frodo’s friend Sam. Only Sam witnessed the full extent of Frodo’s struggle and bore the brunt of his despair. Sam briefly carried the ring himself. At the end, he carried Frodo, ring and all. So we can also name “ringbearers” the caregivers and companions of the afflicted.

Each of us knows one or more people who qualify as humanity’s ringbearers. We have the privilege of walking beside them and supporting them, first, by witnessing their travail and, second, by giving help.  They pay the price of randomness for us all. They affirm and embody the value of life. Their gift to those who choose to share their struggle is a higher plane of life – that is, life for which sacrifice has been made.

On a high, wide rampart above a once chaotic plain, the citizens of Middle Earth celebrate victory. Scarcely visible in the crowd are some humble fellows, one bearing deadly wounds.

Mitch, Boris, Tanya, Mindy, Elizabeth, and Jacob – how we wish you could stand beside Frodo and Sam at this moment.

The celebration quiets, as all bow in gratitude to you. Then hear the song[9]

Eglerio! …Praise them!
The Ring-bearers,
Praise them with great praise!

 

Next post:  Becoming Ringbearers

Previous post:  I Am Not My Brain

Searching for GSOT outline:  Home


Header image:  Hobbit hole in Hobbiton village near Matamata, New Zealand, a set created for filming of The Lord of the Rings, now a tourist attraction, by Tom Hall [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons.

[1] Guyton, J.R., and Guyton, M.A.  Ringbearers: a hobbit’s perspective on genomic medicine.  Lipid Spin 9:9-10, 2011.

[2] Mendelian, named after Gregor Mendel, the Augustinian monk who grew peas in great variety and founded the science of genetics in the 19th century.

[3] Ringbearers, Lipid Spin, 2011.

[4] Collins, F.S. The Language of God. Free Press, New York, 2006. Enns, P. The Evolution of Adam. What the Bible Does and Doesn’t Say About Human Origins. Brazos Press, Grand Rapids, 2012.

[5] Ringbearers, Lipid Spin, 2011.

[6] Tolkien, J.R.R. The Lord of the Rings. Part 1. The Fellowship of the Ring. Ballantine, New York, 1982, p. 354.

[7] Simpson GG. The Meaning of Evolution: A Study of the History of Life and of Its Significance for Man.  Yale University Press, New Haven, 1967, pp. 291, 345.

[8] Ringbearers, Lipid Spin, 2011, and following quotes.

[9] Tolkien, J.R.R. The Lord of the Rings. Part 3. The Return of the King. Ballantine, New York, 1982, p. 285.

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