"The Reward in Personal Bonds - Mother Marianne Cope and Bearing Witness to Suffering" 3rd

“I am hungry for the work, I am not afraid of any disease, hence it would be my greatest

delight ever to minister to the abandoned lepers.” – Mother Marianne Cope (July 12, 1883)

Since visiting Kalaupapa for the first time last May (2018) with JABSOM’s Partnership for Social

Justice, I have been drawn to Mother Marianne Cope’s story and legacy. Born in Germany and

raised in New York, Mother Marianne was a sister in the Franciscan order in New York since

she was 21 years old. After learning about the dire situation facing patients with Hansen’s

Disease in Hawaii at the age of 45 in 1883, Mother Marianne left her life in New York and came

to Hawaii.

Mother Marianne spent the remainder of her life working in hospital and community health

settings in Kalaupapa (with some time on Oahu), where she helped and entered into the lives of

countless patients with Hansen’s Disease who found themselves in situations of abandonment,

lawlessness, and incurable sickness. She found a profound and divine sense of joy in her work.

In response to reasons why she decided to work with Hansen’s Disease in Hawaii, she stated: “I

am hungry for the work, I am not afraid of any disease, hence it would be my greatest delight

ever to minister to the abandoned lepers.”

At a time when society feared any threat of Mycobacterium leprae, why did Mother Marianne

find such reward in caring for patients with Hansen’s Disease? Mother Marianne’s joy came

from experiencing a personal bond with her patients—patients in isolation whom society had

largely given up hope on. In forming relationships with patients with Hansen’s Disease who

were outcasts from the rest of society, Mother Marianne experienced the gift of friendship

across societal lines. By working and living in Kalaupapa, Mother Marianne embodied a life of

solidarity with people with Hansen’s Disease, seeing those with the disease as equals.

The medical profession presents us with an opportunity to experience the same kind of “delight”

that Mother Marianne experienced in caring for people with Hansen’s Disease more than a

century ago. When we choose to listen to and care for patients who find themselves in

situations of distress, fear, or perhaps outright abandonment, we “minister” to and care for

patients of all backgrounds. There is tremendous beauty in treating people with dignity

regardless of disease, social class, ethnicity, history, and intellectual (dis)ability. When done

right, the reward in medicine is that it presents us with opportunities to see the entirety of the

human condition and to offer peace and dignity to all who enter our care. The reward is found in

bearing witness to suffering—namely, to walk with people as they face disease and make

meaning out of their experiences.

Since the beginning of my journey into medicine, I have been passionate about working with

and learning from patients facing life-threatening and life-limiting disease, particularly in

resource-limited settings. Like Mother Marianne, there is something I find rewarding in helping

people find meaning while facing the challenges of living with an incurable disease. Thus far, my

clinical and research experiences have been predominantly been in HIV/AIDS care. Prior to

medical school, I worked in Delhi, India, with a faith-based HIV clinic that provides inpatient and

outpatient care for the urban poor affected by HIV (many of whom transgender-women) from

2015 to 2017—an experience that has profoundly influenced the way I approach medicine. I

also spent my MD 5 summer in San Francisco with the National Institute of Aging’s Medical

Student Training in Aging Research (MSTAR) program, working on a project examining geriatric

conditions in HIV-Infected Older Adults with cognitive impairment.

My work with the HIV community has taught me much about the purpose of medicine. HIV positive

individuals live in complex realities, and many face comorbid diseases, isolation,

stigma, poverty and mental health challenges. Many people living with HIV have seen sickness,

stigma, and death first-hand. My most impactful experiences in HIV care have been listening to

patients reminisce about loved ones they have lost to AIDS (see Figure 2 below, “2018 AIDS

Walk San Francisco”). I am moved by the spectrum of experiences of people living with HIV:

both isolation and camaraderie, hopelessness and joy, and death and life.