We often hear the term “new normal” used in describing lifestyle changes resulting from the COVID-19 pandemic. However, those words are familiar to cancer patients. Max Lerner, in his memoir Wrestling with Angels wrote, “I felt split into two selves; one, the sick self I had to live with, the other normal one I was trying to live by.” He was referring to the fits and starts of coming to terms with his physical and psychological adjustment to living with cancer. You could say that Lerner was describing his struggle with defining “new normal.”
During my tenure as a medical humanist at a cancer center in Bennington I observed how the disruptive forces of illness thrust patients from what had been a “normal” life to a new one rattled with fear and uncertainty. The shift, however, was not usually permanent. I learned that patients often moved back and forth between thoughts and emotions from the present to the past and back again.
Thinking about the meaning of “new normal” also brought to mind Adrienne Barnes, a patient whose experiences were documented in the Center for Communication in Medicine’s video Voices from The Lived World of Illness*. She told us, “Every day you wake up and your whole sense of self has changed whether you want it to or not. You have to think of yourself as different.” She went on to say, “It’s not impossible to admit that some good things have come out of this but I still wish that I didn’t have pancreatic cancer.” Pete Johnson, another patient in the video admitted, “There are times even now that I think that tomorrow I’ll wake up [and] I’m not really a cancer patient. It’s all been a dream.”
Of course, it wouldn’t surprise anyone that most patients diagnosed with a serious illness are in shock because they know that life will never be the same. What shouldn’t be overlooked is the tension between longing for the old self and a wish to have a meaningful life going forward. I recall talking with a patient who asked, “How do you live knowing you’re going to die?” I took a deep breath and said, “With difficulty or more fully.” He paused and then smiled, “You mean I have a choice.” This could be viewed as a step toward defining his “new normal.”
When healthcare providers set expectations for a “new normal,” it can be a slippery slope. Although the term is often used with sensitivity to regulate emotional reactions to symptoms and side effects of treatment, it can also silence patients from talking about their needs, concerns and what they hope for. Facing uncertainty would be better served if patients identified what truly matters in their lives and have factual information to weigh choices to fulfill their needs and hopes. In the end, it is up to patients to look into themselves and communicate to healthcare providers and loved ones what they wish would be a “new normal.” These open and honest conversations can help inform decisions that may lead to living more fully.
* This is part of the SpeakSooner ‘Patients Speak’ video series and can be found at SpeakSooner.org under ‘Programs’.