Finding meaning in the pain

ALTHOUGH we’ve all read inspiring stories of people who’ve triumphed over life-threatening illness, chronic pain is not a popular theme for novelists or memoirists. Family, friends, even caretakers can get tired of hearing about it; patients themselves get tired of talking about it and even more tired of feeling it. As Mary Felstiner aptly observes in her book “Out of Joint: A Private & Public Story of Arthritis,” chronic diseases don’t fit the popular mold of recovery narratives.

In 1969, Felstiner, then a 28-year-old graduate student at Stanford, was working toward her doctorate in history and enjoying her newborn daughter when she awoke one night, her wrists in such excruciating pain that she was barely able to lift her baby. She was told that she had rheumatoid arthritis.

A disease afflicting some 2 million people, mostly women, rheumatoid arthritis is only one of the many types of arthritis and related diseases plaguing more than 70 million Americans: one of every three adults and some 300,000 children. Yet as Felstiner found as she searched for personal accounts of others who’d struggled with any form of arthritis, few had written about it. A handful, like novelist Henry Roth, had alluded to their tribulations in their works, but Felstiner searched in vain for a full-scale treatment in the mode of Nancy Mairs’ riveting account of her struggles with multiple sclerosis or Susan Sontag’s pathbreaking writings about cancer. The silence was deafening.

But was silence all that surprising? “Most [arthritis sufferers] go without saying much about it,” Felstiner tell us. “For thirty years I kept my life-with-arthritis under wraps. The reason, I’m ashamed to say, was shame. I was embarrassed to ask for favors on the job, chagrined at moving slower than full stride, humbled by looking tired and antique.”

Felstiner had whizzed her way through Radcliffe and Columbia and had even been featured in a 1963 Life magazine article about the “new” breed of Harvard coeds, who were not just “brainy” but “beautiful.” A photograph accompanying the article, showing Felstiner at the center of a respectful and admiring group of Harvard males, speaks volumes. A little later, when the feminist movement opened her eyes to unfair attitudes and practices, she strove to embody the model of the invincible and independent liberated woman. But arthritis made a mockery of independence, let alone invincibility. Stiff joints made it hard to nurse her baby, hard to split household tasks (as she and husband were used to doing), hard to lift heavy books for research and hard to write, whether with pen or keyboard.

And although Felstiner had embraced feminism, it would be many years before she realized the importance of political activism on behalf of the disabled. For decades she soldiered on, believing bodily ailments were personal matters to be kept to oneself. But gradually she arrived at the opposite conclusion: A “national curse” should not be considered a private shame.

A historian by training, she decided to write a chronicle of her struggles which would combine her personal, patient’s-eye view with a history of the disease, from the earliest treatments to recent breakthroughs, along with social and political developments leading to the Americans with Disabilities Act in 1990.

“Out of Joint” is the author’s second book (her first, “To Paint Her Life: Charlotte Salomon in the Nazi Era,” was a critically acclaimed study of a German Jewish artist’s struggle to provide a record of her doomed life in the shadow of the Holocaust). Now, handling the subject of herself, Felstiner proves not only an able historian but a powerful memoirist, deftly combining the private and the public.

Particularly compelling are her vivid accounts of how it actually feels to be her: not only the pain that can stop her from doing simple tasks or her problems with side effects of medications, but the tensions chronic illness can create in a marriage and the anxious fears that can flood the mind. When taking up the question of why the disabled are entitled to certain rights, however, the rationale she offers is weak: “[W]e need the unfittest to broaden human variance (time to turn Darwin on his head), because the more the spectrum stretches, the more normal every one of us will look.” This overlooks the point that all people have different abilities (a quick mind, a sympathetic disposition, a courageous heart), as well as the classic belief of humanists and religious alike: Every person has rights.

If chronicles of triumph over illness may be too upbeat a model for afflictions that worsen over time, Felstiner proves there is something to be gained from any experience, and something more to be gained from examining and writing about it. Currently doing reasonably well with the help of strong new drugs and the support of friends and family, as she looks toward the future she anticipates “a steady downward spiral.” But as her joints continue to degenerate, she rightly feels she has found a way of “moving forward” by delving into the past.

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Merle Rubin is a contributing writer to Book Review.