Resilience

Resilience in Practice

Battling cancer during COVID-19 reveals the hard work behind resilient behavior.

Posted Oct 15, 2020

In early March, my friend Stephanie received the news that her breast cancer had relapsed, now as a regional metastasis with involved lymph nodes. While she was grappling with decisions about treatment, the World Health Organization declared COVID-19 a global pandemic. We all scrambled as workplaces and children’s schools closed, public officials issued shelter-in-place orders, and necessary supplies like toilet paper and pasta flew off the store shelves.

Stephanie faced a long road of chemotherapy, surgery, radiation, and targeted therapy — treatments that would also put her at increased risk of serious illness or even death from COVID-19. At the same time, the pandemic robbed her of almost all the supports and resources on which she usually would have relied, as her immune-compromised state meant family and friends could not visit her, nor accompany her to treatments. My friend’s journey over the past six months has taught me a great deal about resilience in daily practice. 

Stephanie Hornbeck, with permission
Stephanie enjoys a late summer day, wearing a mask made by a new friend.
Source: Stephanie Hornbeck, with permission

Stephanie is one of the 1.8 million Americans who have been or will be diagnosed with cancer in 2020. The necessary precautions taken by the medical community to reduce the spread of COVID-19 have resulted in significant delays in cancer screening and treatment. In a survey conducted by the American Cancer Society, 79% of cancer patients reported interruptions in treatment. The economic consequences of the infection control measures have also had an impact; 46% of those surveyed reported changes in their ability to pay for care. Cancer patients are also disproportionately affected by the stress of COVID-19 — 48% reported COVID-19 has adversely affected their mental health with the majority of respondents reporting increased stress as shelter-in-place orders are lifted. Multidisciplinary, supportive oncology teams may include psychologists and social workers; these specialists are available to assist patients with their cancer experience and to guide them toward available support resources. Drawing on these at Northwestern Medicine, Stephanie has benefited from therapy sessions with specialists and a guided meditation program with Chill.

Stephanie and I graduated together from Wellesley College in 1990. Our friendship cemented during our early 20’s when we both began our careers in New York City. We shared the experiences of living in a one-bedroom apartment with multiple roommates, raiding the complimentary refreshments at SOHO gallery openings, and taking endless walks up and down the length of Manhattan. Stephanie was the last friend I called from the airport when I panicked before leaving for the Peace Corps in Niger, West Africa. She was the first friend I called when my father died. She had buried her father only two months before.

Since March, Stephanie quarantined with her two cats in Chicago where she currently lives. While I — like everyone — have struggled with working from home, school, and camp closures, separation from family — cancer compounded Stephanie's experience. Stephanie lives alone. During her first stage of chemotherapy, she was confined to indoor experiences only at home and the hospital. Only recently was she cleared to meet friends outside. Her cancer is aggressive; she will be continuing with targeted therapy treatment until April of 2021.

Stephanie and I recently caught up by phone. Our conversation leaped from topic to topic, as happens with friends of 30 years. She was excited; the next week, she would officially be on vacation from work. Her doctor had cleared her for a day trip. Her friend was driving to Chicago to take her to Kemil Beach at the Indiana Dunes National Park. She was scared; she faces at least nine more months of cancer treatment. Her mother lives in New Jersey, her brother in Brooklyn, and her sister in upstate New York. She was worried she may never see them again.

During that call, I asked her what kept her going during this time. The parallel between her examples, and those in Jane McGonigal's interviews and Ted Talks struck me. McGonigal identifies four types of resilient behaviors: social, physical, mental, and emotional.

1. Social. Despite Stephanie’s fierce independence, she sought help from others and reinforced connections with others. She organized friends to drive her to and from chemotherapy, bring her meals, and pick up groceries and medications, and go on walks together. She updated her team at work about her medical condition and delegated work projects to them. She started a WhatsApp group called "Blue Butterfly" to update friends and family about her treatment and provide a forum for support. Friends from around the world stepped up, posting images of everything from flowers to pets, providing words of encouragement, sharing links to art experiences, and offering reading suggestions. 

2. Physical. Despite fatigue and nausea from chemotherapy, Stephanie continues to work as much as possible leading her museum’s conservation department. She finds engagement with colleagues and work projects to be essential to her well-being. Stephanie dons her mask and gloves to walk around her neighborhood, consciously absorbing Chicago’s summer sunshine while it lasts, appreciating nature’s beauty, and keeping active. She has also learned to make time to rest during the day when needed. For a driven, active person, learning to rests is a resilient behavior. 

3. Mental. Stephanie is an art conservator, who has focused much of her career on preserving objects from underrepresented populations. For example, she worked in Haiti from 2010 to 2012 to recover cultural heritage after the major earthquake. With the pandemic, deprived of travel and visiting the museums and galleries that usually bring her so much joy, she sought stimulation in reading. In a recent WhatsApp post, she wrote: “Last day of vacation! I’ve been enjoying the essays in Conor Knighton’s book, Leave only Footprints: My Acadia-to-Zion Journey Through Every National Park. I’m inspired to read naturalist John Muir’s writings.” To participate in her community, Stephanie volunteered to assist a neighborhood fashion designer with making face masks, a task she could do while quarantined at home. A rewarding, new friendship has developed.

Stephanie Hornbeck, used with permission
A nature shrine found at Indiana Dunes National Park.
Source: Stephanie Hornbeck, used with permission

4. Emotional. Stephanie consciously seeks opportunities to find joy in simple experiences. She appreciates her pet companions. She describes the oasis she has on her small balcony that enables her to enjoy the “outdoors” without leaving home. She shared images from her recent trip to Indiana Dunes National Park, noting the softness of the sand and the swirls of black and smooth stones and the nature shrines left by other visitors, feathers surrounded by rocks. She celebrates the nutritious meals brought to her by friends by arranging them on colorful dishes and place-settings. She retains her sense of personal expression through her enjoyment of fashion and jewelry.

McGonigal and others argue resilient behavior will enable us to live longer. As a scientist, I am skeptical by nature, and my brain will always seek more data and better studies before being convinced. But what I am sure of is this: when I called Stephanie, I intended to encourage her, but she inspired me. I hope Stephanie's resilient behaviors will lengthen her life — and mine. But even if they do not, practicing resilience will make the time both of us have on this earth better. And I will always be grateful to my dear friend Stephanie for that.

Interested in resilience? Check out the resources on resilience page sponsored by The Lee Kum Sheung Center for Health and Happiness at the Harvard T.H. Chan School of Public Health.