In Practice: Illness and silver linings
My patient, Pat, has had a difficult year. Her husband’s cancer spread and he’s getting chemo and radiation. “That sounds rough,” I tell her. “It is,” she responds. “But not entirely.”
She says that Thom’s illness has drawn them closer to each other. They’re spending much more time together and with their children and grandchildren. Plus, Pat says, “we have also had the joy and pride of knowing how much our children come through in a difficult time.” Thom jokes that when he and Pat call, their daughters now pick up the phone right away.
During the recent one-year anniversary of the Boston Marathon bombings, Pat said she identified with the conflicted feelings of survivors who said they wished the attacks had never occurred, yet also cherished the sense of community they’d found with fellow survivors.
Pat reminds me that her family had already experienced the unexpected upside of medical misfortune. One of her grandchildren has autism and is nonverbal. She’s told me that there is something about this kid that brings out the best in all the other kids, and the adults, too. Makes them more understanding, more compassionate. Pat recognizes that her granddaughter might be better off without autism, but her family wouldn’t necessarily be better off. “She doesn’t need to change for us,” Pat says.
Not that anyone, including Pat, would want a loved one to have cancer or autism. But the clouds of illness and disability come, not infrequently, with silver linings.
Some people, like Pat and Thom, are optimistic by nature. “We’re not cavalier,” Pat says. “We just feel the best will happen instead of the worst.” Even after learning of his poor prognosis, Pat says of Thom: “His glass isn’t half full — it’s overflowing.” When I ask Pat to describe what she and Thom are going through, she mentions the superb medical care he’s gotten, and even expresses gratitude. “Unlike those that are stricken with an unexpected death,” Pat says, “we have been able to make plans.”
Not everyone can maintain such equanimity, but doing so may have tangible benefits. Several studies, including the Women’s Health Initiative, have suggested that people who have positive attitudes have decreased risk of heart disease and tend to live longer.
But it would be inaccurate and unfair to conclude that people who succumb to serious illness lack a healthy mind-set or aren’t “fighters.” As Columbia psychologist Richard P. Sloan wrote in a 2011 New York Times op-ed, “The incessant pressure to be positive imposes an enormous burden on patients whose course of treatment doesn’t go as planned.”
For people dealing with a long-term illness or disability, a silver lining may involve more than a positive attitude. What starts out as a calamity becomes woven into a person’s identity, and their family’s — and sometimes even enriches them.
My colleague Margie, a nurse practitioner, has a sister, Anne, who was born with Down syndrome. Now that Margie’s parents have died, she and two of her sisters are Anne’s guardians. Margie and these two sisters, who live far apart, regularly drive together for four hours from Boston to the community where Anne lives with others who have Down syndrome. During that drive the siblings have more intimate conversations than in the occasional phone call they’d have shared as more typical adult siblings with busy lives.
“The trust with each other is so great,” Margie told me of the effect of this ritual. “The sibling rivalry is gone and it’s a wonderful time with one another to talk about spouses, work, and ourselves. It also allows us to sort of empty out ourselves to be ready to focus on Annie once we arrive. And she’s so joyous. Huge hugs and smiles.”
Lately, since Anne has developed Alzheimer’s (a common complication of Down syndrome), Margie and her sisters are thinking about what their relationship would be without Anne. “We talk about what it will be like when she passes away and we don’t make these epic car rides, how much we will miss all that takes place during our drive and perhaps we should continue to schedule at least twice a year get-togethers with just us sisters.”
I understand how Margie and her sisters feel.
A few years ago, my mother had a small stroke that obliterated her short term memory and affected her speech. Mom had always been a super-organized person — someone once asked her, half-jokingly, if she was the lady who invented Post Its. There were few things she enjoyed more than sitting at her computer, paying bills, tracking investments, and answering e-mails. When she had the stroke, she became incapable of these activities. A great raconteur, Mom now couldn’t speak fluently. Our family worried about whether these losses would devastate her.
But a strange thing happened. For several days after the stroke, my mother became extraordinarily calm. She seemed to have no recollection of the computer we thought she’d miss, or of anything other than what was happening in the moment. I have never seen anyone so present.
During this time, I took her to a botanical garden. Mom had always favored the luxuriant English style of plantings but that day, to my surprise, she wanted to linger in the Zen garden: an expanse of tidily raked stones punctuated by a few Bonsai. We sat there under the hot sun for what seemed to me an uncomfortably long while. Then Mom turned to me and said the most consecutive words she’d uttered since her stroke: “Don’t spend your life on nonsense,” she told me, smiling. “Don’t waste your time.” Then she turned back to the stones and we sat some more.
I often think of that bright morning in the garden. I think how to make sense of this: One of the most purely wonderful moments I ever shared with my mother was made possible by an event I wish had never happened.