There is nothing like severe nausea to increase our humility and remind us that we too are only human.
—Kathryn Lindskoog
Most illnesses, especially the major ones, are blind accidents we have no idea how to prevent. I have had multiple sclerosis for more than twenty years. I was an extremely active young adult in love with life when the disease hit me. No bad habits brought it on. None of my friends or relatives got it. It just happened.
It is an unpredictable disease that acts like polio in slow motion, weakening and paralyzing the whole body. The fatigue is indescribable. There is nothing to do for it but rest.
Other major illnesses we don’t know how to avoid include intractable heart disease, rheumatoid arthritis, the majority of cancers, nephritis, stroke, schizophrenia, and several other things you wouldn’t want to have. By now you have probably already thought of someone in your church with one of the above.
Thank goodness, some of our old enemies are now vanquished. Tuberculosis was a major scourge that was fought in vain with a kind of early holistic medicine. George Orwell, author of 1984, was one of the last of a huge number of great authors who died young (in 1950) of TB. People thought the disease was caused by a combination of factors such as night air, lack of sunshine, poor food, and overwork. They treated it accordingly in sanitariums, and the patients usually died. But when we learned how to get rid of the tubercle bacillus, we conquered the disease.
Whose Fault Is It?
I mention Orwell in order to show the problem with holistic assumptions about major illness, which are so popular today. Holistic medicine is a current fad.
Perhaps it should be called hope-istic medicine. Lewis Thomas writes in his essay “On Magic in Medicine” that the (still useful) idea of single causes for complicated diseases is out of fashion today. We somehow prefer to think that everything (except currently identified infections) is caused by wrong personal lifestyle and wrong environment. (I have a book that claims Parkinson’s disease is caused by a lust for power.) People want to believe that if they live right, they won’t be hit by serious disease. At best, this idea can lead them to take better care of themselves; as a result, they are apt to feel better and look better—but they may or may not escape serious disease.
Much of the insight of holistic medicine rings true because we always knew it. Is it news that we are what we eat, and we are what we think, and worry wears us out? Is it news that people die of broken hearts, that no man is an island, that the whole is more than its parts? Is it news that we are more than machines, that our bodies are the temple of the Holy Spirit, that a merry heart doeth good like a medicine? Eternal news, maybe.
The sick side of holistic medicine is that it promotes a blamethe-victim attitude toward people hit by serious disease. Let me illustrate not from a church context (although examples abound) but from a medical setting to clearly make the point. I spent a bizarre month in a local hospital three years ago trying to withdraw from physical addiction to prescription Valium. All I wanted was basic physical care; I needed someone to give me dry bedding during the night. Instead, I was forced to sit through nine hours of daily lectures in hot, smoky rooms no matter how ill I was. The lectures were poorly prepared, but that was supposed to be part of the cure. The creed at that hospital (part of a successful chain that advertises on television) was that everyone who becomes addicted to anything is selfish and irresponsible and manipulative.
So they did not provide dry bedding, much less change the bed. Instead, they tried to get me to break down and admit that my life had been useless and unproductive to this point. They urged all the patients to become a bit religious (they brought in a preacher who recommended the Judeo-Christian religion), and they pressured us constantly to admit how we craved alcohol or drugs.
“But I have no interest in alcohol or drugs,” I exclaimed in dismay.
“Your denial proves your dishonesty,” they answered. “It’s that dishonesty that got you addicted to your medication. You won’t get well until you admit that you brought all your troubles on yourself. You are responsible.”
That was poppycock. When my doctor prescribed Valium for multiple sclerosis symptoms, he had mistakenly assured me it was nonaddictive.
According to Lewis Thomas and many other thoughtful observers, an ideological (and financial) purpose underlies the increasingly popular notion that every American is responsible for his own health. It gives conservative reassurance that sick people have brought their troubles on themselves and therefore they should pay for it and endure it without help. On the other hand, it also gives political radicals reassurance that the only answer to disease and death is some kind of social upheaval they happen to favor, since our old system hasn’t enabled Americans to achieve good health for themselves.
I’m the last person to think we should live carelessly in these fragile (yet wonderfully strong) bodies and then expect doctors to fix whatever goes wrong. I’ve always been a bit of a health nut. I expressed myself on the clean-air issue as soon as I was born, straining to escape the smoke of my parents’ cigarettes. I still feel bad that I trusted the baby food companies and fed my children countless jars of stuff that was low on nutrients and high on sugar and salt. I don’t want sawdust in my bread or aluminum in my cheese or wax on my cucumbers and apples. I think we live in a smog of radiowaves and that it can’t be good for us. Every breakthrough toward health cheers my heart.
But the present cult of physical fitness, both inside and outside the church … what does it all mean? Does it possibly express selfishness or fear? As Melvin Maddocks, my favorite columnist, writes, “Someday, with all the manic force he likes to muster, Richard Simmons should warn us that history won’t much care how flat our stomachs are if that becomes our only ideal of fitness.”
Our Real Fear
Perhaps, in the words of Hugh Drummond, M.D., “the issue is not death. It may be that death is a kind of refuge from a less dramatic but more real source of anxiety: chronic illness.… Mahler composed symphonies to death, not to diabetes. There are no odes to cancer. Chronic disease is an unsung presence, which hovers, fluttering, like an uncertain bird of prey.”
Drummond made me think. I know of no poetry about chronic disease, but three of my favorite selections in world literature are about it: “The Metamorphosis” by Franz Kafka; “The Death of Ivan Ilyich” by Leo Tolstoy; and the book of Job in the Bible. They terrify people. They are incredibly honest about what it is like to have a serious, unavoidable disease.
Kafka’s story is a kind of allegorical fantasy about the tuberculosis that was slowly killing him. In his extremely calm, matter-of-fact way, he tells how mild-mannered Gregor Samsa awakened one morning to find he had somehow become a huge cockroach. “He slid down again into his former position. This getting up early, he thought, makes one quite stupid. A man needs his sleep.”
Gregor’s parents, whom he supported, became upset because he wouldn’t open his locked door and come out and go to work. His boss came from the office to find out why he was late. Everyone kept insisting that Gregor come out and perform as usual.
His boss called through the door, “You amaze me, you amaze me. I thought you were a quiet, dependable person, and now all at once you seem bent on making a disgraceful exhibition of yourself.” Gregor couldn’t make himself understood, and he didn’t know what to say anyway.
After a while, Gregor became eager for the others to see his condition. If they were horrified, he would know he couldn’t go to work. If they took his transformation calmly, he would somehow catch the train and get to work, knowing this disorder was nothing too serious.
When the family called for a locksmith and a doctor, Gregor felt much better. Now people believed there was something wrong with him and were ready to help. “He felt himself drawn once more into the human circle and hoped for great and remarkable results from both the doctor and the locksmith, without really distinguishing precisely between them.”
Alas, when his family and his boss saw what had happened to him, their revulsion and terror sealed his doom. Gregor tried to put a good face on it by saying, “One can be temporarily incapacitated, but that’s just the moment for remembering former services and bearing in mind that later on, when the incapacity has been got over, one will certainly work with all the more industry and concentration.… I’m in great difficulties, but I’ll get out of them again. Don’t make things any worse for me than they are.”
His boss’s only response was to scream “Ugh!” and flee hysterically. His mother collapsed on the floor in self-pity, and his father attacked him. They scared him back into his room, slammed the door, and left him there.
The rest of this story is a gripping and wryly humorous account of Gregor’s life with this disease, cut off from work, affection, and company. At the end of his life, “He thought of his family with tenderness and love. The decision that he must disappear was one that he held to even more strongly than his sister, if that were possible.” The reader sighs with relief, along with Gregor’s family, when his dried-up body is tossed out with the trash by a malicious old charwoman who had liked to poke at him with a stick.
The power of this story is in the fact that all of us who are still in the prime years of our lives may wake up some day and find that we, like Gregor, have lost our acceptable form in the night and become monstrosities. “Now all at once you seem bent on making a disgraceful exhibition of yourself,” many friends, relatives, and colleagues tend to respond along with Gregor’s boss. The attitude is not uncommon.
“Don’t make things any worse for me than they are,” all the ill wish along with Gregor. But it is the nature of chronic illness—and the nature of people—to often make things worse. Kindhearted humans can rally magnanimously at a deathbed, but they are not prone to rally to a person who can’t manage either to get better or else to die. Like Gregor’s beloved sister, some make warm commitments at first; but time and other concerns draw them away.
Kafka has portrayed for us the isolation and rejection felt by victims of nightmare disease. This Gregor was the kind of person who had spent his life serving and supporting others; when he lost his usefulness, he lost everything.
Remarks to Forget
Like “The Metamorphosis,” Leo Tolstoy’s story “The Death of Ivan Ilyich” tells of an incurable illness, in this case kidney disease. Ivan gradually realized that his health was gone forever; his life had ground to a halt. Ivan’s family kept up the superficial appearance of caring, as most families do. But, in fact, they felt martyred by inconvenience and were intensely resentful.
Ivan was isolated.
Ivan was an entirely worldly man caught up in his flourishing career. His suffering finally brought him to the point where he became aware of what God was trying to tell him. Furthermore, he had a kind young Christian servant named Gerasim who sat with him and tried to ease his pain and accepted him as he was. They didn’t talk much, but there was human warmth and touch. The good young servant wasn’t horrified by Ivan’s illness; he knew that such things happen.
Like “The Death of Ivan Ilyich,” the book of Job tells of disaster striking a successful family man at the height of his career. Chronic illness was only one of his misfortunes, but it was central. An additional misfortune for Job was the discomfort he got from his friends who came to comfort him. Unlike most sick people, he lashed out at his fair-weather friends and told them what he thought of their pious, self-serving platitudes. In turn, they castigated him for putting God in a bad light.
The story is full of poetry, eloquence, wit, and even sarcasm. It isn’t the kind of thing one expects in the Bible. Many readers are apt to side with Job’s friends until they come to the end and hear God’s judgment against them. The forty-two chapters, besides being sacred Scripture, comprise one of the best books ever written. Kafka and Tolstoy knew it well. The world has always had people like Job and his friends. Some things never change.
I’ve had my share of Job’s comforters, and so have most other people with MS and similar diseases. It seems as if we scare other people so much that at times they can’t think straight. Their defenses can pack a wallop. Here are a few typical examples from my own experience, remarks I would rather forget:
“You must really like to be sick; you bring so much of it on yourself.” That from a nearby relative who never so much as sent a get-well card.
“The reason I have perfect health is that I think right; nobody gets sick unless he thinks wrong.” That from a relative who seems to feel insecure about all his good luck in life.
“Have you heard about the woman whose MS was cured by Shaklee products?” That from a Shaklee dealer who very much wanted the story to be true.
“Dear, if your faith is sincere, tell everyone right now that God has healed you completely.” That from a friend who couldn’t wait to report such a claim to her Bible study.
“I know just how you feel about being crippled; I had a bad case of tennis elbow last month.” That was from one of the local country club crowd.
“If you’ll take a long, fast walk every day and soak in hot water, the pain will go away.” That from my doctor who didn’t want to admit that I could no longer take a long fast walk at all, and that hot water doesn’t help nerve pain.
“You never should have adopted your children.” That from a friend who knew I needed help but who can’t stand housework.
“If you don’t make the effort to get out and mix, it’s no wonder you get lonely.” That from an old friend who can’t make time to see me.
“I admire you so much for your bravery.” That from many people who seem unaware that I’m scared. (I think they are afraid that I’m afraid.)
“God must cherish you to trust you with this burden.” That from people who would rather die than to be cherished by such a God.
“Your present improvement is just wishful thinking.” That from people who are very rigid about sticking to current medical orthodoxy.
“I know you fake your limp to try to get attention.” An entirely serious remark from my pastor after a dozen years of seeing me hobble around our large church complex. That’s the one I haven’t gotten over yet.
If people think I invented some of these, I don’t blame them. I can hardly believe some of them myself—and I was there. They don’t ring true in the world of Mother’s Day teas and Hallmark cards, but when I stop and think about it, they ring true according to the Bible. It’s not the Bible that says things are going to be easy.
In our polite society, we tend to gloss over hurtful remarks and forget them. It’s bad style to complain. And goodness knows one of the trials of chronic disease is that it spoils your style. Gone are the smashing backhand, the dainty shoes, the fantastic cooking, the light step, the perfect grooming, the coordinated wardrobe, the skill of circulating at a reception, the memory for names. If you weren’t a klutz to start with, you’ll soon become one when disease takes its toll. So while still trying to pass as a normal person and win acceptance, you don’t dare offend people by exposing sensitive feelings.
Job, of course, wasn’t even trying to pass as normal or to win acceptance. So he fought like a tiger. He not only exposed his sensitive feelings but filled one of the greatest books of the Bible with them.
Job’s friends assumed they were wiser than he, knew more about God, and were spiritually superior. That’s a common pose for healthy people to take when dealing with a sick person in despair. I challenge anybody to check how spiritually victorious he feels in the midst of violent seasickness or a bad case of intestinal flu. There is nothing like severe nausea, I think, to increase our humility and remind us that we too are only human.
Fear of blundering or not knowing what to say keeps some people away from those who suffer. But willingness to be with a sick person as a warm human friend means more than a talent for talk. An occasional awkward or ill-chosen remark is the least of the problems a sick person faces. It is really rather foolish to so often feel we have to say something brilliant and enlightening to someone who is suffering. He doesn’t expect that. Why should we? Kafka and Tolstoy and the author of Job make it clear that simple companionship (a form of love) is what suffering people often crave—not a course in philosophy.
The Greatest Need
On the positive side, here are ten suggestions for those who want to help people with chronic disease:
1. Object to propaganda that blames the victims. Get into the habit, even if you object only in your own mind. Blaming the victim is an everlasting temptation; remind yourself that it is arrogant stupidity.
2. Keep in touch. I have had old friends drop me off their Christmas letter list (I learned later) because they didn’t want to have to hear bad news about my MS, and they figured the time had come when my prospects looked bad. They didn’t want to risk their feelings.
3. Be accepting. Allow the person to feel sick and scared and frustrated part of the time if need be. If he ever lets down his happy façade with you, it’s not a social atrocity. Take it in stride. Likewise, allow him the luxury of seeming wildly optimistic. Stay calm.
4. Don’t trivialize his or her problems by equating them with petty irritations of everyday life. I went to hear a Christian teach on “How to Respond When Tragedy Strikes,” and his whole talk was about how he kept his serenity when he had a flat tire. I thought he was a flat tire.
5. If you have an item of health news, pass it along—but acknowledge that it may not be accurate or relevant or that it may be old information recycled. One of those is usually the case, and your statement eases the disappointment. Your thoughtfulness will usually be appreciated. But don’t pass on items that are depressing. Stick to the positive.
6. Take time to learn the facts about this person’s condition. Read up on it if possible, or question someone who is reliable and informed. Realize that the person may (or may not) be sick of describing it. Caring enough to understand what’s wrong is a rare gift. I have seen a dying woman flinch with pain when her friends at church carelessly congratulated her for managing to get her face to fill out so nicely. I could see at a glance that her face was bloated from cortisone and that she was going downhill and frightened. Her old friends refused to look or listen.
7. Form a pool of practical helpers in your church, or use the deacons’ fund to hire professionals to do chores for the chronically ill. Most churches have casserole brigades to help people with short-term ailments, but no casserole brigade wants to touch the tar baby of chronic illness. The chronically ill are least apt to have money for hiring help, and they need it most.
8. Be tolerant of the person’s views about prayer and healing. Perhaps he believes in divine healing today and you don’t, or vice versa. Respect his belief. You can pray for him even if he thinks healing is impossible (or even if you do). After all, some chronically ill people do recover, even when doctors have little hope. Job did. So share your ideas if they are uplifting and the sick person wants to hear, but if he doesn’t buy in, don’t go off in a huff like a disappointed vacuum cleaner salesman.
9. Follow your urge to touch often. It is said that sick people need human touch most of all and get it least. If you’re glad he’s alive, let him know it. You may counteract other recent input that has made him feel physically rejected and useless.
10. Be brave. Be brave enough to read Kafka, Tolstoy, and Job very slowly and thoughtfully. Then be brave enough to be kind.
Copyright © 1997
