Citizens of Sickness
In his new book, Strong at the Broken Places, Cohen chronicles the dreams, struggles and coping methods of five others with serious, life-threatening afflictions.
We meet Denise Glass, suffering with ALS, popularly known as Lou Gehrig’s disease; Buzz Bay, struggling with non-Hodgkin’s lymphoma, a virulent form of cancer; Ben Cumbo, a 20-year-old college student living with muscular dystrophy; Sarah Levin, a social worker battered by Crohn’s disease, a painful digestive track ailment; and Larry Fricks, dealing with bipolar disease, also known as manic depression. Cohen telephoned, corresponded by e-mail and met with each of them, seeking to understand how chronic illness impacts individuals and families.
Denise Glass was in her 40s when she received her diagnosis of ALS. “It was like the doctor punched a fist into my gut,” she recalled. Family members offered to help, but Glass pushed them away, not wanting to be dependent on anyone. “Dependence is worse than dying,” she told Cohen.
Buzz Bay is sustained by a deep Christian faith that he will be cured of non-Hodgkin’s lymphoma “in this life or in Heaven.” He drew solace in becoming a hospice volunteer. Sometimes the pain from his tumor is overwhelming, but he is reluctant to complain. “I am at peace,” he says, although he worries about his unpaid medical bills, which exceed $500,000.
Ben Cumbo was diagnosed with muscular dystrophy at age 3 and began using a wheelchair as a teenager. Heading off to college was scary. One night a housemate helped him onto the toilet and left. Cumbo had to crawl back to his room and spend the night on the floor because no one was available to help him into bed. Cumbo has faith in God and is sustained by hope and the realization that many other people are worse off.
Sarah Levin developed severe symptoms at age 3, but was misdiagnosed as having ulcerative colitis. Years later, during surgery, doctors realized she actually had Crohn’s disease, which causes continual bleeding and exhaustion. She thought that no man would marry a “defective person,” but she eventually found love and is happily married, although she worries now how her husband will deal with her impending colostomy surgery.
Larry Fricks has confronted mental illness, alcoholism and drug addiction. A Baptist, Fricks says he often feels God’s presence and remembers a “spontaneous, spiritual awakening, a conversion experience. It was like a sustained flash of light. God had communicated with me and touched my life.” He volunteers in a nursing home and works with troubled children. Despite his suffering, Fricks has no regrets about his mental illness because without it he would not have found the “meaning and purpose I now have.”
Each of these individuals comes across as friendly and resilient under exceedingly difficult circumstances.
The five finally had a chance to meet face to face when Cohen arranged for them to talk at Harvard Medical School, where they gave students a glimpse into what it is like to live with chronic illness. One clear message emerges: physicians too often are clueless about patients’ emotional needs.
Another complaint was the stigma attached to serious illness, and the public’s tendency to focus on patients’ limitations rather than their accomplishments. It frustrates Denise Glass when people hear her ALS-induced slurred speech and assume she is retarded or drunk. Larry Fricks resents being placed in a “diagnostic box,” knowing that if he gets excited or upset, some people will dismiss his feelings as a sign of mental illness.
Cohen notes that 90 million Americans suffer from chronic illnesses, but this book is not primarily about numbers. Cohen lays out the physical, emotional and financial toll of long-term sickness, although too much of the text consists of short quotes spliced together from tape-recorded conversations and e-mails.
The author’s obsessive anger and disparagement of spiritual faith undercut the more hopeful messages of his five subjects. At the Harvard gathering, the five playfully gave Cohen a gift certificate for an “Anger Management 101” course. But anger is no joke for Cohen. “Screw the positive attitude, anyway. Give me anger and frustration anytime. Those are honest emotions,” he writes.
He is equally dogmatic in his disdain for spiritual faith, calling it “alien,” “a mystery to me” and something for “old folks heading around the bend.” To his credit, Cohen cites “the danger of having a closed mind” and concedes that spiritual faith might help some people, even if it has no meaning for him, “a smug, godless New Yorker.”
Although the individual profiles resonate, Cohen never steps back to ask what they mean. We are left with scattered bits of information and heartbreak, without a persuasive conclusion. Nevertheless, these stories offer insight into issues too often left in the shadows.
To supplement the book, Cohen created a Web site, strongatthebrokenplaces.com, where he invites others to join the conversation by telling their own chronic illness stories.
This article also appeared in print, under the headline “Citizens of Sickness,” in the March 10, 2008, issue.
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