BOOKS AND ARTS JULY 2, 2001
Love, Politics, and Parkinson’s Disease by Morton Kondracke
By Morton Kondracke
(PublicAffairs, 275 pp., $25)
Narratives of illness have deep roots in our culture. For millennia, interpretations of disease--the reasons for the malady and the source of its solution--were grounded in the Bible. Miriam, in the Book of Numbers, develops leprosy after voicing resentment and disseminating doubt about Moses's leadership. Leprosy, a disease of relentless physical decomposition, is measured recompense for a sin that dismembers the cohesion of the community. The Book of Leviticus describes in detail how to diagnose leprosy: the priests, as agents of God, search for signs of the disease not only on the victim's body but also in his possessions and his dwellings. Treatment involves separating the afflicted from the healthy and performing a series of elaborate cleansing rituals. In Miriam's case, and presumably in the cases of others, health is restored by confession of the sin followed by a heartfelt appeal to God for healing. The Gospels recount Jesus's miraculous restoration of the lame and the blind. And the story of Lazarus goes one step further: here divine intervention is shown to be capable of transcending the biological limit of life.
These parables, which many of us learned as children, conceptualize disease as punishment for sin, whose consequences include not only physical suffering but also the psychological pain that comes with banishment from the world of the healthy. The return to health pivots on God's benevolence. But this conceptual framework is set aside in the case of Job. Here the punitive theory of bodily pain is useless, since debilitating illnesses occur in the absence of apparent transgression. Job's maladies are part of a test devised by God to counter a challenge by Satan. Job's friends, limited by man's ignorance of divine plans, can offer no tenable explanation or significant solace. God does not extend His hand to draw Job back to physical and emotional health.
It is no surprise that the Book of Job is not regular fare in Sunday schools. Job's pleas for an explanation of his suffering are met by the divine voice in a whirlwind that asserts only that no answers are forthcoming, and that questioning is to cease. But the questioning did not cease. In the modern Western canon, in works such as The Death of Ivan Ilych and The Magic Mountain, Job's queries to God take the form of self-examination. Illness is shown to cut away the facade of our daily lives and to expose our very souls. The questions become not only "why" but "what": what substance remains in us that can withstand the shattering force of severe disease and the prospect of death? We are forced to turn inward, away from the body, in our search for the meaning of the body's grim destiny.
In recent years there has been a flood of illness narratives, many with a distinctively formulaic cast: an elaborate repetition of the particulars of the person's life, followed by "existential" ponderings that culminate in cliches or homilies. Morton Kondracke's deeply affecting book is a sharp departure from this contemporary current. It is the story of his wife, Milly, and her suffering from Parkinson's disease, and of his life with her before and during her affliction. The book is authentic, poignant, and disturbing. It makes no pretense at cosmic wisdom. Instead it disarms and enlightens the reader with a candor so complete as to seem almost naive. Kondracke seems to be a natural truth-teller, and the directness of his narrative, its demotic lack of interest in irony when confronted with the rudimentary facts of mortal illness, opens his reader's heart and engages his reader's mind.
Fourteen years ago, while writing a check to accompany her daughter's college application, Millicent Martinez Kondracke noticed that she could not form the letter K correctly. "She got a piece of paper and wrote her signature four or five times," Kondracke recounts, "then more times, and said her handwriting just wasn't right. I saw no difference. Anyway, I thought Milly was both vain and perfectionist about her clear penmanship. Whatever was wrong--if anything was wrong--was in her imagination or was being exaggerated, I figured." Kondracke's retelling of this pivotal moment in the life of his wife and his family is emblematic of the understated tone and unalloyed honesty that permeates the book.
Millicent Martinez is hardly a hypochondriac or a hysteric. The daughter of a fugitive radical unionist MexicanAmerican father and a dysfunctional Jewish mother, Milly was without parents from an early age. She largely made her own way out of a Chicago barrio, with an iron will and a clear vision of life's threats. Moreover, she is no stranger to illness. Indeed, she is a close observer: at the ominous time of the misshapen K, Milly was a private psychosocial counselor, and had trained in the neurology ward of the National Institutes of Health.
Kondracke admits that in his youth Milly Martinez was not the wife he was looking for. A Midwesterner educated at Dartmouth, Kondracke's intention was to climb to the top of the social ladder. The most ready route to power and money was to land an Ivy League spouse with the wealth and the pedigree to compensate for his own undistinguished origins. Such a mate, Kondracke confesses, would have acted as a catapult to launch the stellar journalistic career to which he aspired. But he could not resist the love that he felt for Milly, this lovely, indigent Mexican-Jewish woman with no special prospects, and he married her. Yet this unexpected love--it is a measure of Kondracke's decency that these confessions do not seem at all vulgar--did not fill the void within him. And so for decades Kondracke applied alcohol as the numbing balm for his pained longings for fame, wealth, and clout. Finally, in the year before Milly's first sign of illness, he dried out and swore off drink. Still, his sobriety apparently did not extend to a clear vision of his wife, or of himself. It would take a devastating disease for that.
Shaky handwriting is often the first indication of Parkinson's disease. The disorder is marked by the irreversible death of neurons in the brain that produce the chemical dopamine and control critical motor functions. The pace and the severity of the disease can vary widely from person to person; some individuals live for decades with only minor difficulties, such as a fine tremor, while others are rapidly incapacitated, imprisoned in a body whose muscles are locked and unyielding. The primary treatments for Parkinson's disease are Symmetrel, which may help reduce symptoms, and Sinemet or L-dopa, which works to boost the levels of the much-needed dopamine in the brain and to restore smooth and coordinated motor function. But as more and more neurons inexplicably die, the drugs lose their beneficial effects, and the patient faces experimental treatments fraught with risk.
The diagnosis of Parkinson's disease carried a special terror for Milly. She had worked at the Neurology Center in Bethesda, Maryland, counseling patients with multiple sclerosis, Alzheimer's, and amyotrophic lateral sclerosis (Lou Gehrig's disease), and she had seen the devastating manifestations of neurological degeneration. Milly also observed how these debilitated patients were abandoned by family and avoided by friends--their conditions so disturbing and so burdensome to the healthy that they were segregated from society, the equivalent of the biblical lepers.
Patients such as Milly who are seized by fear can prompt well-meaning physicians to make grave medical missteps in the misguided desire to allay the anxiety. When Milly sees the doctor who had been her director at the Neurology Center in Bethesda for a consultation on her tremulous writing, he tells her that her unsteady hand and her lack of coordination are owed to an inflamed nerve at her elbow. But he prescribes Symmetrel, a cardinal treatment for Parkinson's disease. "Milly took [the drug] believing it meant to help her nerve problem," Kondracke writes. "He did not tell her what it was actually for, evidently not wanting to scare her."
Extending the "bliss" of ignorance is a traditional method for doctors to patronize patients. But in the end it boomerangs, and only increases the patient's burden. Not only does the truth become inescapably apparent, but the serious breach of trust casts doubt and distrust over all the doctor's future pronouncements. And this is how Milly's grim story plays out. Four months after its prescription, she musters the courage to look up information on the drug. She telephones her husband in an incoherent panic. He rushes home, not knowing what calamity has occurred.
The calamity turns out to be the truth. "I know what Parkinson's is," Milly says to Kondracke. "I've seen people with it.... It's a horrible disease. People shake. They cannot walk. They choke on their food. It can't be that!" With an eerie foreboding, Milly describes to her husband an exact picture of her future. The one detail she does not envision is her progressive difficulty in communication. One day she will become nearly mute. The specter is so awful that Milly shifts into deep denial: "Even though Milly rejected ... [the] diagnosis, she was haunted by it. She took it as a curse. She could talk about little else. She told me she was convinced she would be abandoned--as she was by her mother, and as her father was by many of his labor union friends when he was disabled and being pursued by the government. ... [S]he was sure that I would find her `disgusting' and leave her. She said she had known several patients at the Neurology Center whose husbands promised to stand by them when they got sick but ultimately didn't."
Milly regards the diagnosis as a punishment from God, but the punitive analysis finally fails for her: as with Job, there is no apparent sin great enough to justify this terrible torment. For this reason, she finds it hard to pray to God for healing. Kondracke, raised in a diluted form of Protestantism, becomes more and more religious, or at least sufficiently devout to petition the Almighty to save Milly. Still, he is enough of a realist to know that he must not await a miracle, that he must search in this world for help and not rely on help from above.
The Kondrackes embark on a journey familiar to many with severe illnesses whose origins are obscure and whose therapies are unsatisfactory. They continue to grasp at the straw of misdiagnosis. An elderly neurologist at the Mayo Clinic in Minnesota tells Milly that she does not have Parkinson's disease, but rather "essential tremor," an inconsequential shaking of her hands of unknown cause. He goes on: "Lots of people have it. It's benign. It won't get any worse. The nice thing is, you can help control it with a glass of wine at dinner."
This reprieve is illusory, and it is not long before Milly loses strength in her right hand. She soon cannot hold a pencil firmly or manipulate tweezers. The Mayo misdiagnosis, like the misrepresentation at the Neurology Center, only works to amplify her anguish, and she is soon repairing regularly to a cocktail of Valium, Prozac, and Xanax. A return visit to the Mayo Clinic with a more competent neurologist ends with a therapeutic trial of Sinemet, the mainstay of Parkinson's therapy. But the Kondrackes recognize that Sinemet is just a palliative therapy: it lessens the symptoms but does nothing to stop the degeneration of the vital nerve centers in the brain.
Then Milly turns to the National Institutes of Health. Her attending neurologist now suspects that she does not have a classic case of Parkinson's, since her symptoms of muscle stiffness and uncontrolled shaking have not responded well to the drug. He suggests that they conduct a therapeutic trial, gradually taking her off the medication and then gauging her response to precisely measured intravenous doses. Perhaps, the doctor advises, this would help to determine her ideal dosage. "This procedure proved to be a descent into hell," Kondracke recalls. "After a few days without medicine, Milly was totally unable to move, speak, or swallow. She had to be fed intravenously. I watched my wife turn almost into a living corpse, able only to move her eyes, which had a look of terror in them. She could understand what I said when I talked to her, but she could not respond or even squeeze my hand as I held hers."
Kondracke could not bear to watch what he saw:
I appealed to [Dr.] Verhagen to begin giving her Sinemet again, and he agreed that it was time. Over the course of a week she gradually ascended out of hell, but she never regained as much body control as she has had before the experiment. Verhagen said the test--less than twelve days in all--confirmed that her "parkinsonism" consisted of more than simple loss of dopamine. This is not unheard of. About one third of Parkinson's victims have something vaguely known as "Parkinson's-plus." Milly evidently has it, but no one knows exactly what it is, what causes it, or how to treat it. ... Dr. DeLong [another neurologist] later told me that he thought her case sui generis--"Milly syndrome," he called it.
Faced with a degenerative disease that traditional medicine is hard put to define or to ameliorate, it is no wonder that the desperate Kondrackes seek alternative healers. They travel to Chinatown and are instructed in preparing a complex brew of what Kondracke describes as tree bark and twigs, a foul concoction that Milly dutifully imbibes. After many weeks, they accept it as worthless. Desperation deepens, and it drives Milly to undergo two risky and complex operations on her brain. Neurosurgeons make precise cuts along neural tracts deep in her cerebrum, trying to release the tight clamp imposed on her muscles. Briefly, her movement and her speech improve. But the benefits prove transient. It soon becomes excruciatingly clear that the pace of Milly's disease is faster than the pace of medical research.
Without available treatments to pursue, Kondracke puts his energy into his role as his wife's caregiver. His unvarnished, highly detailed account of the burdens of loving care is unforgettable:
At night and part-time on weekends, I am Milly's caregiver. Even with love in my heart, it is hard work. ... When it's time for bed, we go back to the bathroom, where I undress Milly, put on her nightgown and new underwear, and brush her teeth. Then I roll her to the bed, open the covers, lift her, sit her down, and help her swing her legs into bed. ... I'm usually dead tired by eleven-thirty or midnight, so after kissing her and telling her that I love her, I fall off to sleep quickly, holding her hand or touching her arm. She often falls asleep later, so sometimes I wake up at 5:00 A.M. and find the TV still on. I turn it off and go back to sleep. In the morning, after our kiss, I click on Good Morning America or Today. Before I get ready for work I give her the easy-to-take medicine, Sinemet and Mirapex, then take her to the bathroom once again and, if necessary, change her disposable pad on her side of the bed and give her another nightgown change.
These noble and necessary activities are not presented by Kondracke as acts of pure virtue. "Some people tell me `You are a saint.' I admit that for years--and still sometimes--I used to exult in that. I feigned modesty, but I was not modest. I wanted to be Saint Mort, and I wanted to be known as Saint Mort.... When I wheeled Milly into a room and treated her in a loving way that is normal for us, I couldn't do it without also thinking about how admirable people would think I was." But Kondracke is alive to the perils of spiritual vanity. "I was using Milly, in effect, to secure respect from people that I feared I couldn't achieve otherwise. I do not know why I stopped doing this. In truth, I haven't entirely stopped. But one day it dawned on me, that life is not for show, but for real."
Ironically, it is "for show" that ultimately provides Kondracke with the national stage that he long craved. He emerges as a high-profile Beltway pundit, first on The McLaughlin Group and now on Fox Television. These programs are political bread and circuses--verbal food fights brought into millions of American living rooms. But now he understands what he wants from his notoriety. He knows how the levers of power are pulled, and they are within his grasp--and so he throws himself headlong into lobbying on behalf of people with Parkinson's, even though his efforts are unlikely to bear fruit in time to rescue his wife.
Initially, Kondracke's goal is to win on the congressional playing field: to secure funds earmarked for Milly's disease. Since the federal research pie is finite, this is most easily done by cutting out the biggest slice for your malady and blocking appropriations to other disease advocates. Kondracke has a particular animus toward the well-organized AIDS activists. He baldly asserts that he viewed the money for people with AIDS as misspent, since AIDS (unlike Parkinson's) is a disease that the sick largely brought on themselves through sex or drug abuse. In an electric encounter with Gary Rose, a gay AIDS advocate, filmed as part of a PBS television documentary, Rose spits back at Kondracke's calumny. Rose asserts that it is his mission to fight for himself and his gay loved ones, in the same way that it is Kondracke's to fend for those close to him. Disease politics are more than local; they are familial. Whether or not Kondracke complicates his understanding of AIDS and its victims, he does decide to change his strategy, realizing that trying to rob Peter to pay Paul is a bad idea. He now seeks to expand medical funding across the board, and to be sure that Parkinson's has its place.
Parkinson's was for years largely peripheral on the national research radar. It only attracted attention when a celebrity fell ill, because an admired and familiar face could be attached to the malady. In this case, the face belonged to Michael J. Fox. Yet even in this opportunity to push Congress and the public for much-needed support, Kondracke discovers the dark lining in the silver cloud. He reports, with palpable sadness, how Parkinson's foundations and disease advocacy groups compete against each other and snipe at each other. In his view, they have failed to capitalize on Fox's advocacy in a coordinated fashion. Ego and pettiness get in the way of a united front.
What distinguishes this book from so many other narratives of illness is the power of its voice--simple, direct, unvarnished. Kondracke's confessions are never maudlin. Milly and Mort are neither suffering saints nor heralded heroes. They are people who ardently love each other. And their love, we learn at the close of the story, demands a terrible form of responsibility. Kondracke promises Milly a death with dignity, meaning a death that is chosen by Milly, at a time and a place, and with his direct intervention, to minimize her suffering and to expedite her passing. The stories in the Bible do not end this way. Assisted suicide is a step that Kondracke believes he will be capable of taking. It comes perilously close to a God-like hubris; but it remains his only way to save Milly, and this good, wounded man now lives to save her.