Art for Recovery Champion Paints Her Past, Present, and Future

I was hired in 1988 by Ernie Rosenbaum, MD. He took me up to the HIV unit at Mount Zion and left me to figure everything out. I remember the elevator door opening and I was a deer in the headlights. There was the smell of disinfectant. And death. Nurses and doctors were running up and down the hallway, no time to stop, their white coats flying behind them. They were searching for the red phone, to call the AIDS hotline to find out where to go after they had a needle stick. But it was the first patients I visited at the bedside. All very young men who had nursed their partners until they died and now found themselves living and dying of AIDS. In many cases their family had disowned them.
 

from the Bay Area Reporter, 1989

I remember one of the first patients I went to see. I was told to wear a mask, gloves and a gown. I was told to disinfect the art supplies. I entered the room, and took off my mask because I couldn't breathe. I took off my latex gloves because I couldn't touch. I introduced myself and asked if I could sit down. I asked the very young man to tell me his story, and I asked him if he was afraid. He started to cry and told me that everyone who walked into his room told him he had to have hope. But in 1988 there was no hope, there was no cure for AIDS. I wanted to do everything I could to show up and be there for that young man and for all the others who were facing death. In that moment I knew this is where I was meant to be, I was "home." My heart was filled with compassion and love. That moment set me on this path. That moment changed my life.

Watercolor above by UCSF patient

I am deeply touched by the people who have continued to believe in me, especially the generosity of donors who allowed Art for Recovery to remain relevant and have sustainability. It was never about the amount they gave, it was that they believed in this work, they understood how their generosity would allow me to grow the program and continue to meet the needs of so many.

Art for Recovery has grown into numerous projects and programs. Though I did not set out to create a program that has breadth and depth across the UCSF campuses, I know in my heart this has happened because so many have believed in Art for Recovery and me.

Mixed media canvas by UCSF patient

Two come to mind. First is the Firefly Project, which is an exchange of letters throughout the school year, and a collaborative art project between our patients living with life-threatening illnesses and UCSF medical students and Bay Area teens. Since I created this project in 1992, I have become close friends with many of the participants. Many of the teens who wrote at the beginning are now adults who still keep in touch.

But most importantly, it is the patients, many whom have died and left their legacy in their letters. I have saved every letter since 1992. I save them because there have been occasions where I was able to send the letters home to the families. For example, when Ruth was 15 she participated in the Firefly Project. When she was 19 she was killed in a car accident. I had all her hand written letters where she spoke about what she wanted to be when she grew up. I sent these letters to her mom, who told me this was everything to her -- to see her daughter's handwriting, to read her letters where she spoke about what she wanted to do with her life, to know that she had been a happy teenager, was a true gift.

There are many stories like this where the letters became a legacy of someone's life in a moment in time. Whether a patient dying of cancer, or a medical student discussing the struggles of becoming a physician, or a teenager who finally has the opportunity to reflect and write about the loss of a parent to a patient pen pal. 

Creating the Art for Recovery Open Art Studio has changed my life. Patients who are living with all stages of cancer attend every week, rain or shine, literally in sickness or in health. They have formed the most beautiful community where nothing is held back, everyone feels safe in expressing their inner most feelings of grief, joy, anger and hope and no longer feel isolated in their experience with cancer. When a patient dies, we continue to celebrate their lives. There are photographs where we remember them, and stories to tell. We looks at a specific chair, in the art room, where a special patient always sat, and we feel her spirit. The Art for Recovery art studio at Mount Zion holds the spirits of all those who have passed through. This community of beautiful people have taught me what it means to be alive and what it means to die.

Painting by UCSF patient

I am deeply grateful for this experience. However, these accomplishments have impacted my life: how I communicate, how I sit with empathy and compassion, how I try to understand the mystery of death, how I live my life. Their impact on my life is beyond what I could possibly imagine. I have given over 50 eulogies during my years here at UCSF, asked by patients and their families before they died. I never wanted to be that person that used numbers to remember how many patients have died; I wanted to remember who they were in life. Many years ago I started keeping obituaries, or if there wasn't one, I would write about the patient. I keep programs from their services as I want to know that they existed in my lifetime.

Painting by UCSF patient

I love going to museums and becoming inspired. I love music too! I take photos and find life-drawing relaxing and valuable. I have painted, illustrated, worked with mixed-media, collage, my whole life and it is a part of who I am. Lately, I have made paintings of some of my patients and I do look forward to having time to process these 32 years and see what comes out on the canvas. I have published 6 books - writing books like "Bedside Manners" and the Art for Recovery Prompt workbooks that respond to the needs of the patients. I also write about my life and this work because of the impact it has on me. I write essays to my kids that I will give them someday about how proud I am of them, a moment that I witness, and I write about my own life -- what I believe and all that I am still trying to figure out. I have always said that I couldn't be more creative than the work I do every day. The 3am wake up is when my ideas strike. As an artist, this work is what inspires me.

Canvases by Cindy Perlis

Although I have been filled with grief at the idea of leaving work that I created, I am excited about what lies ahead. I have six grandkids who deserve my attention, they are the loves of my life. I want to have time with my husband, who is an atmospheric scientist and also on the glide path to retirement. Time to travel, and time to not worry about work on Sunday night. I will be coming back to UCSF two days a week to work on special projects for the Cancer Center including a coffee table book of the PCMB art work. In addition, I will continue with a few of the Art for Recovery Projects. I may find a continuation of the work I love in Marin through Hospice by the Bay and Marin Health. I now have an art studio in the ICB building in Sausalito, which I am very excited about -- I just hope I have time to go there. For now, I would love time to process the past 32 years.

Mixed media canvas by UCSF patient