Glynis, an artist in her 50s, has peritoneal mesothelioma, a rare and serious cancer linked to asbestos exposure. The diagnosis upends not just her life, but the lives of everyone close to her. Glynis keeps her darkest thoughts to herself, which strains an already precarious marriage. The nest egg her husband Shep set aside to support an escape from the job he detests goes instead to cover out-of-network treatment with a top-flight oncologist. Meanwhile, Shep and his sister fight over who should care for their aging father, and the couple’s closest friends face their own medical calamities. All these events build to an unexpected conclusion, but before then, Lionel Shriver’s novel So Much for That1 presents a rich and insightful picture of illness and health care in today’s United States.
This passage describes Glynis’s illness experience. It is a vivid portrait of life in the midst of a brutal treatment regimen that resembles what thousands of cancer patients endure. I know, because I went through something like it myself. To me, the passage perfectly captures the sense of alienation that patients experience. I read it the first time with the shock of recognition. That’s just how I felt, I thought—Shriver nailed it!
Patients who are seriously ill experience two kinds of alienation. One is alienation from the people around them. Those privileged to be in good health are obsessed with the inconsequential. Glynis ridicules a neighbor jogging in the winter weather. Decked out in fancy running clothes, he radiates pride in his self-discipline. Yet he has no idea of what true willpower is, she thinks. “Cancer had required real endurance, real discipline, real willpower, in comparison to which a little step aerobics, a mince around the golf course, was a joke.”1(p318)
Sickness and medical hardships dominate the world of patients like Glynis. For Glynis, “food-as-pleasure,” indeed, pleasure itself, are “data no longer available.” Eyes are “one of only parts of the body that work.” Pain is the only thing that matters.
Patients are also alienated from their earlier selves—selves who once worried about the trivialities that preoccupy the well. Glynis sees herself as two different people: “Before Glynis” and “After Glynis.” Before Glynis is someone After Glynis cannot understand. How was it possible that she once cared about things like healthy diets, exercise, and current events?
The only people able to reach After Glynis are those who have experienced serious illness themselves. For most of the book, the only person she really connects with is her friends’ 16-year-old daughter, born with a debilitating and ultimately fatal genetic condition. The two afflicted persons inhabit a world foreign to families, friends, and the doctors who care for them. Only when they are together can Glynis acknowledge that her cancer is incurable.
I remember feeling the same kinds of alienations and connections that Glynis does. But I was luckier than Glynis. Nine years after my treatment I am here to write about it. And I also had better doctors than she did.
Glynis’s doctors don’t even attempt to enter her world. They speak mainly of treatment options and improving survival rates. After surgery and an initial chemotherapy regimen fall short, her oncologist orders a different chemotherapy drug that inflicts a new array of terrible side effects. The heavy burdens that treatment imposes on the patient are no reason to hesitate. Financial considerations are irrelevant, too. After all, as one physician says, “given the stakes … Well, I assume that money is no object.”1(p50)
When Glynis’s condition continues to deteriorate, her oncologist proposes an experimental colon cancer drug that just might have a “crossover effect.”1(p377) As encouragement, he recounts the case of a mesothelioma patient who lived for years longer than anyone expected. A few days later, however, he tells Shep that the drug has almost no chance of helping Glynis.
Glynis has gone along with the treatment program, signaling that she wants to hear only optimistic scenarios. None of her doctors is willing to deviate from the positive script. It is Shep, not Glynis, who becomes angry at the doctors. Near the end of the ordeal, Shep accuses the oncologist of misleading his patient: “You just keep plowing through the drugs, working down the list, keeping everyone’s chin up, looking on the bright side, never saying die.”1(p380) As Shep sees it, the doctors’ praise of Glynis’s endurance has backfired, leading his wife to consider her decline a personal failure rather than the unavoidable outcome of a lethal disease.
Shriver casts a harsh light on a too-common charade that occurs when patients near the ends of their lives. Patients don’t want to believe that they cannot be cured, and physicians don’t want to reveal the unwelcome truth. No one calls a halt to aggressive treatment that reduces patients’ comfort and opportunities for a peaceful death.
Glynis needs doctors with the courage to enter her world. She needs doctors who can see what her life has become—a life in which joy is incomprehensible and pain is all that matters. She needs doctors who will give her a realistic idea of her future.
Shriver captures the way that illness can transform a patient’s inner world. Life in what Susan Sontag called “the kingdom of the sick” bears little resemblance to life in “the kingdom of the well.”2 In the kingdom of the sick, terrifying facts about mortality must be part of the conversation. The best physicians realize this, of course. To those who remain unconvinced, Shriver makes a compelling case for change.