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Accepting Care in a Space of “Unknown and Disruption” by Ina Dixon

Tim Schwantes was interviewed by Ina Dixon in October 2018 for SOHP’s Stories to Save Lives project. He gave his consent for his interview to be archived with the Southern Oral History Project at UNC-Chapel Hill and for Ina to write about his powerful interview. 

I interviewed Tim Schwantes in the fall of 2018, a few years after his wife’s cancer diagnosis. The diagnosis was serious and rare—a neuroendocrine tumor—and Tim and his wife Anna had to face it at a young age with their young son, Sam. But I had always known Tim as an energetic and enthusiastic caregiver; I assumed he could tackle this new obstacle in stride.

Some background about Tim: He lives an especially active lifestyle and takes health seriously in both his professional and personal life. He makes a priority of getting exercise daily and eating healthy foods. His private life is governed by similar commitments to health he practices in his public work. Tim works with Healthy Places By Design—a Chapel Hill based nonprofit that supports communities in improving their health through changes in local policies and the built environment. I met Tim around 2015 while he was working in this role as a consultant in Danville, Virginia, helping to pull together a regional Health Collaborative. In Danville, I got to see firsthand that Tim was good at his job—his energetic and affable nature allowed him to connect and inspire a wide array of people to action for better public health.

I wanted to know how this independent extrovert was dealing with a serious health crisis affecting his young family. Tim agreed to sit down with me for an interview for the Southern Oral History Program’s Stories to Save Lives project, which explores the past and present experience of health and medical care in North Carolina. Tim was open and candid about the burden of Anna’s cancer on their family, his health, and his identity. Some of what he said surprised me.

Health is not an impersonal topic, as Tim’s personal experience of illness shows. Each one of us will experience similar illness, death, and loss at some point in our lives. Yet, too often we rush to conclusions about how to live healthier, longer, better. Since at least the 1940s, North Carolinian medical boards have been calling for “more doctors, more hospitals, more insurance.” (The Good Health of All North Carolina (1945) NCHH-54. North Carolina History of Health Digital Collection: http://archives.hsl.unc.edu/nchh/nchh-54/nchh-54-000.pdf ) The answer has been, to many in the medical field, give people greater access to, and better quality, care and they will be able to fulfill their health and vitality.

Tim’s own work falls in line with similar thinking: give people access to support systems that encourage health—walkable neighborhoods, healthy foods, access to healthcare, and robust community leadership—and these communities will, in turn, be healthier. Yet at an individual level in the United States, perhaps the path to health is not as clear as having access to “more” or “better.” What I learned from Tim is that health is about access, but not just one’s access to services, support and people. Health is also about giving access to these networks of support and people at moments of deep vulnerability.

Throughout Anna’s illness, Tim’s family had the benefit of loving community support. With backgrounds and professional experience in public health, both Anna and Tim could navigate the maze of healthcare and advocate for quality care for Anna. They had health insurance. Yet access to love, care, and financial support were not enough to guarantee health, or ameliorate the physical and psychological toll of this particular illness. Tim had the support of a loving community, but welcoming it meant giving up a part of his identity—and perhaps an illusion—as a self-sufficient provider for his family. In his interview, Tim reflected that though he appreciated all that his friends and family was doing to support him during Anna’s illness, their support was often at a cost to him.

The more people came to help him, the more Tim felt he needed to maintain his image as a self-sufficient and in control caregiver.

Tim wanted to maintain order and calm even as he was helpless against his wife’s vicious cancer. Allowing his in-laws, friends, colleagues, and even his son to access this experience of helplessness would erode his sense of strength and independence. It wouldn’t matter that Tim had access to the networks he needed at this time—there was a part of him that didn’t want them. If he let people access him, by providing meals or helping out with childcare, it would make the reality of his helplessness all the more real.

We have to acknowledge this interior aspect of the experiences of health and medical care. It is not enough to have access to robust systems that encourage health and vitality. The systems we access must be sympathetic to the reality of patients’ vulnerability—a vulnerability that is at odds with what many of us desire to be: independent, in control, and able to provide and care for others. Accepting care often means relinquishing control and being taken care of, rather than caring for. Our medical care, support networks, and providers must acknowledge that illness is a crucible that strips us to our most vulnerable selves. Our health systems and caregivers must be good stewards of that bare human state.

Tim’s crucible changed when Anna died in June of 2019, some months after his interview. Even with this loss, the interview continues to give voice to the weight of vulnerability during times of illness and need. Tim’s openness about his experience offers a lesson to health providers as well as to those of us who will have to, at times of medical crises like these, give support or allow others access to our experience. Tim’s story was one of the interviews that stuck with me in my time with the Southern Oral History Program working on Stories to Save Lives. I will always appreciate his contribution to the archive—a contribution that, I hope, will help deepen a humanist understanding of health and medical care in the South.