Master Class in Helplessness: When a Child Gets Cancer

A Master Class in Helplessness

I was talking with my wife not long ago, and I shared that I had been talking with someone the childhood cancer world. In my previous conversation, I had described that experience as a “masterclass in helplessness.” My wife looked at me and said, “There’s your next essay.” And not for the first 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.

What is a Master Class in Helplessness?

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 of. 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.”

Deeply respect the pain in that statement. Understandable, but 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.

Some Parents Feel Helpless

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.

Health Workers May Feel Helpless

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 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.

Lessons From a Master Class on Helplessness

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. At the same time, 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.

The ‘Helpless’ Have Much to Teach

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.

Greg Adams is Program Coordinator at Center for Good Mourning: www.archildrens.org

Read more from Greg Adams on Open to Hope: https://www.opentohope.com/after-a-major-loss-so-now-what/

Greg Adams

Greg Adams is a social worker at Arkansas Children's Hospital (ACH) where he coordinates the Center for Good Mourning, a grief support and outreach program, and works with bereavement support for staff who are exposed to suffering and loss. His past experience at ACH includes ten years in pediatric oncology and 9 years in pediatric palliative care. He has written for and edited The Mourning News, an electronic grief/loss newsletter, since its beginning in 2004. Greg is also an adjunct professor in the University of Arkansas-Little Rock Graduate School of Social Work where he teaches a grief/loss elective and students are told that while the class is elective, grief and loss are not. In 1985, Greg graduated from Baylor University majoring in social work and religion, and he earned a Masters in Social Work from the University of Missouri in 1986. One answer to the question of how he got into the work of grief and death education is that his father was an educator and his mother grew up in the residence part of a funeral home where her father was a funeral director. After growing up in a couple small towns in Missouri south of St. Louis, Greg has lived in Little Rock since 1987. He married a Little Rock native in 1986 and his wife is an early childhood special educator and consultant. Together they have two adult children. Along with his experience in the hospital with death and dying and with working with grieving people of all ages, personal experiences with death and loss have been very impacting and influential. In 1988, Greg’s father-in-law died of an unexpected suicide. In 1996, Greg and his wife lost a child in mid-pregnancy to anencephaly (no brain developed). Greg’s mother died on hospice with cancer in 2008 and his father died after the family decided to stop the ventilator after a devastating episode of sepsis and pneumonia in 2015. Greg has a variety of interests and activities—including slow running, reading, sports, public education, religion, politics, and diversity issues—and is active in his church and community. He is honored to have the opportunity to be a contributor for Open to Hope.