Vision of Life: A Lesson Learned from a 98-Year-Old Artist on World AIDS Day

The HIV epidemic is affecting women in increasing numbers worldwide. Globally, nearly 50% of adults living with HIV are women. ¹ In Sub-Sahara Africa, women constitute 57% of all people infected with HIV, including a striking 76% of the females between the ages of 15 and 24 years. In Russia, at the end of 2003, nearly 38% of adults living with HIV were women compared with 24% in 2001. In the US, the proportion of HIV cases in adult and adolescent women (aged >13 y) increased from 7% in 1985 to 27% in 2003, making women of reproductive age one of the fastest growing groups being diagnosed with HIV. ² Many of these women first become aware of their HIV status during pregnancy. In addition, more HIV-infected women are choosing to become pregnant, based on the knowledge that the use of antiretroviral therapy (ART) during pregnancy significantly reduces mother-to-infant transmission. ³

The Ohio State University (OSU) HIV Pregnancy Program (HPP) collaborates closely with the OSU Department of Obstetrics and Gynecology and Infectious Diseases Service and the Family AIDS Clinic and Educational Services (FACES) at the Columbus Children's Hospital. The HPP has developed resources to address the complex needs of this HIV-affected female population. Since July 2001, the HPP and FACES programs have become a primary referral center in care delivery to pregnant women, infants, children, and families affected by HIV/AIDS in central and southern Ohio.

The Sound, Mind, and Body Institute (SMBI) is a nonprofit organization located in Lewis Center, OH. Its mission is to promote health education and provide financial support to health-related organizations located in central Ohio through fundraising, sponsorships, donations and grants, and event planning and promotion. Late last year, the SMBI recognized the excellent service of this program by organizing a 4-day event titled “Emerging Artist Showcase: Artists for a Cure” in conjunction with World AIDS Day 2004. The theme for World AIDS Day 2004 focused on the HIV/AIDS epidemic among women and girls. I was elated to be involved with the planning process for the event, which was intended to illuminate through the use of art the moral, social, political, and prejudicial issues, in addition to the vulnerability of women, raised by the global HIV pandemic. The event also provided a forum to discuss the updated treatment guidelines, care, and support for HIV-infected individuals provided at OSU.

I was particularly excited about the involvement of Rory Kennedy, a documentary film maker and the daughter of Senator Robert F Kennedy, as I was familiar with her global AIDS advocacy and recent documentary film titled “Pandemic: Facing AIDS.” This film follows the lives of 5 individuals living with AIDS in different regions of the world. I felt that her involvement would help give the event the high visibility it would need to be a success.

The dates were set for the first week in December 2004. The 4-day event was to include a seminar with Kennedy providing the keynote address, a film showcase featuring her documentary, a music showcase, and a live art auction. I had invited many of my closest friends to the kick-off event scheduled for December 2, where Kennedy would deliver the keynote address and present short segments of her documentary film. Among the guests in attendance that night was Rachel Sherman, who had recently celebrated her 98th birthday (Figure 1). I had lived with Rachel in 1986 when I was completing my research training at the Columbus Children's Hospital and OSU. Rachel is well known within the university community both through her own work as an artist and through the work of her late husband Hoyt, who had begun his distinguished career as a professor in the OSU College of the Arts back in 1928 and had remained affiliated with the university until his death in 1981.

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Figure 1.

Rachel Sherman with one of her paintings.

Although she had begun her career as an assistant professor of voice, Rachel had developed an affinity for the visual arts through her many years with Hoyt, and she had since become a respected painter. In the years that we lived together, Rachel and I stayed up late many a night, talking about her life with Hoyt. During this time, Rachel returned to Hoyt's studio and began to paint almost on a daily basis. Each evening, she would ask me to view the work she had completed that day. It was through this interaction that I learned about visual art. Rachel frequently made comments on the importance of “perceptual unity” and seeing the images as a whole, and I always felt I understood the true meaning of the lesson she was trying to teach me.

When she learned about the event SMBI was planning for our clinic, Rachel graciously donated one of her paintings to the art auction and was appointed as the Honorary Chairperson for her gift-in-kind. During the planning stages for the event, I had the opportunity to meet Dr. Karen Bell, dean of the OSU College of the Arts. Dr, Bell elaborated on the importance of integrating art into events promoting health, political, and social issues, whether it be in the form of paintings, music, or films. The integration of art into such events allows the public to view these issues in whole. Again, I nodded my head thinking that I understood exactly what both Rachel and Dr. Bell were trying to convey.

On December 2, I was surrounded by my family, friends, colleagues, and supporters and was looking forward to a successful evening. After several of my colleagues spoke about the various research programs available at the OSU AIDS Clinical Trial Unit, I began my short presentation about our HIV pregnancy program. Near the end of my presentation, the unthinkable happened. Standing behind the podium, I could see that Rachel was in distress. Suddenly, someone was calling for a physician and someone else was calling for an ambulance. Friends were rushing to help Rachel, who seemed to be having trouble breathing. I rushed from the podium to be with her. Rachel said she was having chest pain, and she was breathing with great difficulty. My mind was racing, and it felt as if the ambulance would never arrive. And then, some minutes later, as suddenly as it had appeared, the pain subsided. We determined that Rachel was not in any immediate danger.

Standing there next to Rachel, I made arrangements to get her home, where she could be comfortable and safe. I assumed that she had been frightened by the evening's events and just wanted to put the night behind her. When she was finally able to speak, however, her first words were these: “I'm sorry I ruined your evening. I want to go back and hear Rory speak. Please tell everyone I staged the whole thing.” At the time, I could not believe what I was hearing. I was stunned by her courage and shaken to my core at the thought that I had almost lost her.

That evening, my husband and I dropped by to see Rachel and sit with her for awhile. I was at ease after I had been assured that Rachel's health was indeed stable. When we got home, my husband had a hot bath ready for me. While I was soaking in the water, I lost all emotional inhibition. I sobbed at the thought that I might have actually lost Rachel that night. My memories of Rachel and all of the lessons that she had taught me rushed through me. As I thought about Rachel, I was also profoundly affected by the images of one of the people who had been profiled in the Kennedy film we had seen earlier in the evening. Her name was Lak, a Thai girl who had been disowned by her family after she was raped and forced into prostitution at the age of 12. She had contracted HIV and had returned to her home to see her family one last time before her impending death. Kennedy's images of this young woman and Lak's heart-wrenching reunion with her mother and father, who wanted nothing to do with her, stirred profound emotions of sadness and loss within me. Suddenly, I made a connection that I had never been able to make before. For the first time, I realized what Rachel had tried to convey to me—that artists try to capture images in whole and in perceptual unity.

After experiencing the events of that evening, I finally understood how, through art, we can evoke the innermost emotions of people, expressed as feelings of sadness, despair, anger, happiness, or hope. Unfortunately, as clinicians, researchers, and academicians, these insights are many times lost on us. We are so myopic in our vision of our scientific role in patient treatment that we very often lose sight of the patient and what they truly need from us on a “wholistic level.” Rachel has helped me overcome this nearsighted and shortsighted way of approaching patient care. She has not only taught me about visual art, but she has taught me about a vision for life. She has taught me to see each patient as a whole person, with all of the joy, heartbreak, fear, and hope that we each experience in all of our humanity.

At our HIV High-Risk Pregnancy Clinic, life imitates art in the way it evokes strong emotions among those of us who are responsible for patient care. Some individuals evoke a sense of anger because they are nonadherent to their medications or continually miss their scheduled appointments. Other women evoke a sense of despair because they fail to make it through drug rehab and instead continue their substance abuse throughout their pregnancies. As these women continue to resist our help by falling back into their old patterns, it can be easy to feel a sense of hopelessness about what the future holds for them. But, fortunately, many of our patients also evoke feelings of hope. They adhere to their medications and their prenatal appointments. They succeed in rehab. They deliver infants who are HIV-negative. They overcome odds that often seem truly insurmountable. The purpose of patient care at our clinic is not only to provide optimal medical, obstetrical, and pharmaceutical care, but also to provide hope by seeing each woman in whole and in unity, just as we do in visual art. Rachel has provided me with the most important gift I may ever receive—the vision of life through art. I know that I am a better individual, researcher, academician, and practitioner today than I was prior to the December event.