Vital to life as breath is what we think, feel, dream and make. Discovering and expressing what images and ideas appeal to us is a path to our own deeper worlds, and connection to what inspires the human spirit. It is very important to be inspired especially now. (Mary Louise O'Connor, PhD)
The funeral took place in a quaint, almost mythical-looking stone chapel near the ocean's edge in Gloucester, Mass. The clergyman began the service saying, "ML wanted us all to know that when you are born, you are a gift from God; when you die, you are a gift back to God." I remember reflecting during the service on her gifts and the realization that she was one of the most significant patients that I have cared for as an oncology nurse. As a result of our meeting, a program for the creative arts was established at Dana-Farber Cancer Institute that honors the arts not only for their inherent value and integrity and inspiration to humanity but also, and especially, as sources of hope and inspiration for persons facing critical issues of ill health in their lives.
Diagnosed with an aggressive stage IV malignant melanoma, Mary Louise (or ML, as she preferred to be called)was given a life expectancy of 24 months. I met ML as she was researching her disease in the Blum Patient Family Resource Center, where I work as a clinical nurse specialist at Dana-Farber Cancer Institute, in Boston. She approached me about information on clinical trials and phase I possibilities. What did I know about vaccine therapy? Could we set up some time to discuss possibilities? Cancer vaccine trials have contributed to our understanding of how the immune system works. Some vaccine trials have proven advantages over standard therapies. Her hope lay in a vaccine that, in her words, could "paint a target" on her cancer cells and prompt her immune system to fight her cancer.
Her optimism and hope were impressive. Over the next few months, I learned about her personal struggle. She was both a mother and a grandmother. In her 55th year, she had found a suspicious lesion on her back. Her initial surgery showed unclear margins, but without the backup of her insurance company, diagnostic follow-up was a nightmare. This led to a period of many months before she was able to arrange the follow-up care, which brought her to Dana-Farber. She spoke in metaphorical images with dramatic subplots. She shared with me the dark periods she was facing with the advancing disease. When I asked how she was coping, she introduced me briefly to using "art as a healing tool." I learned that she was a gifted poet, artist, dancer, and humorist.
The seeds sown in that conversation would, in time, lead to a new program at Dana-Farber Cancer Institute. ML shared with her medical team that art for her was a healing modality. A turning point for me came when she shared her plan: to secure an internship in creative arts to complete a graduate degree. Enduring the most challenging and uncertain time of her life, she had a vision with a narrow time frame to put it together. ML proceeded to demonstrate to her oncologist, and to me, how she use dart as a personal healing experience. She asked if she could use the backdrop of the patient and family resource center as the space for her internship, in essence, to make art with patients, family members, and their friends.
Creative arts programming in healthcare was relatively new at that time, and I did not know how it would fit into a research-based hospital approach. As a clinical nurse specialist, I felt compelled to become her advocate and preceptor.
In her internship, ML worked with patients and families who visited the resource center. She successfully managed to create a walk-in open art studio. Each day that she came to our learning center, her enthusiasm to draw and paint was evident. Soon, she was venturing into the infusion area of the ambulatory clinic with her art cart, interacting with patients who welcomed her.
She finished her internship under the patient education domain and published a CD of her poetry. Many of the poems captured her experience from diagnosis through treatment. The following year she entered a doctoral program. I continued to supervise her art experiences.
In the final days of her life, she asked the 3 people she called her mentors to be with her. Noted art therapist Shawn McNiff; her trusted master's and doctoral advisor, Marion Nesbit; and I joined members of her family at her bedside in Rockport, Mass. Shawn sat beside her, interviewing her on tape about her last days of life and her experience of art. She asked me to continue her work and build a program for creative arts for the patients at the Dana-Farber Cancer Institute. Four days later, she finished her dissertation.
She died the following Monday, which was Labor Day, peacefully with her children and siblings at her bedside. From her projected life expectancy of 24 months, with miraculous strength and creativity, she had survived 7 years.
In her honor, the Dana-Farber Cancer Institute held a posthumous graduation, and the doctorate of philosophy degree given by Union Institute was awarded to her mother and 6 children. At the time, we also acknowledged the birth of the institute's Creative Arts Program, with ML as the founder. The three of us who had been at her bedside became the founding members of the advisory board.
Today, the Creative Arts Program is a vital part of the Blum Patient Family Resource Center. We now have staff and volunteer artists and musicians. We welcome student internships and have expanded beyond poetry and visual art to include drama, music, creative writing, and a Humor Us Healers clown program. Selected Dana-Farber staff members contribute their artistic talents to the program offerings, as do many faculty and students of Boston's colleges, universities, museums, and art and music schools. An Arts Advisory Board, composed of faculty members of these Boston institutions, provides guidance to the Dana-Farber programming and its enriching activities.