A Master Class in Helplessness

I was talking with my wife not long ago. I actually talk with her almost every day, even though sometimes when we are finally in the same place it is late in the evening and our conversational capacities are rather spent. On this particular day, I shared that I had been talking with someone (don’t ask me who) about my time working in the childhood cancer world. In my previous conversation, I had described that experience as a “masterclass in helplessness.” She looked at me and said, “There’s your next essay.” And not for the first time, and certainly not for the last time, she was exactly right.

One of those days in the childhood cancer world, I was on the inpatient unit talking with one of the many impressive-as-all-get-out nurses. We were going through a rough patch of newly diagnosed patients, relapses, and deaths. She asked me, "how can we keep doing this?" The answer that came to me then, and sticks with me now, is that we do our best to embrace our helplessness and then keep on trying to help.

In the childhood cancer world there were real people, which means that parents responded in all kinds of ways. One way gave in too much to cancer. In the face of such an unjust calamity, some parents resigned themselves to inaction. What could you really do about it? I could, and still can, identify with that feeling of being overwhelmed and pulling back. In that land of limited choices, however, there were still choices about how to respond and cope - choices about how to live in the midst. There was profound helplessness about the reality of the cancer diagnosis and with it came the temptation to despair. One parent said something like, “we have no more family or life, it is only the cancer.” I deeply respect the pain in that statement. Although that statement is understandable, it's not quite true. That was giving the cancer much too much power and control, and it had enough power and control already. That was giving too much over to helplessness.

Other parents had a very different experience. In most areas of their lives, they were accustomed to solving problems for themselves and for their children. When presented with a problem, they would research it, consult friends and contacts with needed expertise, and work very hard until they resolved the problem. I could easily identify with these parents in their approach to life and problems. However, childhood cancer was not this kind of problem. It couldn’t be researched, consulted, or worked away no matter the time and effort one was willing to sacrifice. It was a different kind of problem, one that defied the usual strategies that worked in other areas of life. In some profound ways, coping with childhood cancer meant living with a horrid amount of helplessness. And understandably for some families, that appeared impossibly hard to accept.

But how about the healthcare team? Well, we had our struggles, too, with making peace with helplessness. Unlike several generations past, most lives of children with cancer could be saved. Most physical pain and discomfort could be medicated and alleviated. But lives saved and pain alleviated came with costs, and sometimes neither were possible. And what about the emotional and spiritual suffering and fears of loss and death that were parts of the experience? They could sometimes be eased in degree, but they could never be eliminated. So we were left with often feeling helpless when we had signed on to be helpful. Like the children and the parents, we wanted more than was possible because we were real people, too.

Fortunately, most children do not get cancer. More adults get cancer, but most of them don’t either. But the lessons of helplessness experienced in the master class of the childhood, and adult, cancer world apply broadly because they are life lessons. Lessons for anyone who faces challenges, illness, injuries, and death. Anyone who experiences limits on living. Anyone who is mortal.

There was another way of responding experienced by some parents in the childhood cancer world. These parents had been through hard things before and had learned that some things could be helped and other things could not. Being helpless was not unfamiliar. They had learned to avoid despair and resignation when feeling helpless. They seemed to intuitively understand that their resources—their time, energy, efforts, and focus—were limited, so they didn’t want to spend them trying to control things outside of their influence. They wanted to get the most out of their limited resources, so they didn’t spend a lot of time fighting their helplessness. Instead, they leaned into the important and limited ways where they could be helpful. This was not their first master class in helplessness. Like all parents, their hearts were broken and they didn’t have the most helpful balance every time because they were real people, too, but their example taught the rest of us another way of living with helplessness.

There is much to earn from all those who live with helplessness and with loss. Those living with disability and serious illness. The dying and the grieving left behind. Those who have lost dreams.

At the heart of it, life is a master class in helplessness - so much we can’t change and that lives outside of our control. And the more we make our peace with our helplessness, the more we can impact and influence what happens in our lives. No final grades with this class. Just learning and new lessons and failing and practice and learning some more.

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Greg Adams, LCSW, ACSW, FT
Program Coordinator
Center for Good Mourning
[email protected]

Other Voices 

Carol Maxwell is a long-time friend and colleague. She is also recently widowed and has a brave and insightful story to share about grieving in a time of pandemic. Her essay is "Grief During a Pandemic." Continue Reading...


In the Spotlight

This two-and-a-half-minute video from VitalTalk about supporting a patient who’s “a fighter” and facing a terminal illness is well worth the time. "When you hear patients say 'I'm a fighter,' you might want to shake your head 'no.' But you can do much better." Watch Now

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Living All the Way

What would it be like to know you only had five minutes to live? Could we learn something useful for our present lives from trying to imagine? Rabbi Kenneth Berger was willing to “go there” in Yom Kippur sermon in response to the crash of the Challenger space shuttle in 1986. His words still resonate. See More
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Particularly for Parents

Caitlin Flanagan is a mom who was treated for cancer. She understandably didn’t want to burden her 5-year-old twin boys with her condition. Instead of explaining cancer and chemotherapy, she told them she had a “bump” that required “silly medicine” that would make her hair fall out. It didn’t go well. So she tried the scary alternative—she told them the truth. That went much better for everyone. Read More

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For Your Library

It’s a rare book that can offer a new insight, make you laugh, and break your heart all on one page. This is one of those rare books.

The Bright Hour: Memoir of Living and Dying by Nina Riggs, Simon & Schuster, 2017.

Nina Riggs was writer, so when she faced her mother’s cancer and death followed by her own cancer and anticipated death, she responded by writing a blog called Suspicious Country. The blog became a book that takes its place among outstanding memoirs when one confronts serious illness and death. Riggs wrote bravely from both her head and her heart. She wrote as a grieving daughter, a wife, a mother of two young boys (Freddy, age 8 and Benny, age 5), a poet, and a keen observer in the land of cancer and morality. She wrote until one month before her death.

It is hard to adequately describe how Riggs could so effectively combine humor, sadness, fear, and inspiration. Perhaps it is better to show than to try to tell:

“'Dying isn’t the end of the world,'” my mother liked to joke after she was diagnosed as terminal.

I never really understood what she meant, until the day I suddenly did—a few months after she died—when, at age thirty-eight, the breast cancer I’d been treated for became metastatic and incurable. There are so many things worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into a measuring cup."

And perhaps my favorite entry was from the Halloween before her death the following February:

"For Halloween, Freddy is a perfect Slash from Guns N’ Roses—top hat, leather jacket, black wig of curls, electric guitar, rock-star attitude. Benny is a last-minute Grim Reaper.
'What happened to being a nuzzly little fox?' I say to him when he appears downstairs in a hooded black cloak from Freddy’s Harry Potter getup last year and a convincing scythe made of duct-taped sticks. 'I loved your little orange tail and your little orange ears!'

'Sorry,' he says very seriously. 'I just wasn’t in the mood for my fox anymore. I promise I’ll be a fox next year. This year it turned out I just really wanted to be a reaper.'

'That’s fine,' I say. 'I know how it goes. One minute you are a happy little woodland critter, and the next you’re death incarnate.'

'Yup, Mom,' says Benny, swinging his scythe over his shoulder as he admires himself in the dining room mirror. 'That’s precisely how it goes.'”
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Taking Questions

How can you start a conversation about a person's life when life looks limited?

How would you like to be remembered? How has your life been different than what you'd imagined? StoryCorps.org has lots of great suggestions for getting a good conversation going. The site encourages readers to use the suggestions they like and to come up with their own. Continue Reading...


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