Artist Statement

When I was thirteen years old, my doctor put me in a neck brace and said it would not last long. Eleven years later, I am still navigating extreme oscillations of health while feeling stigmatized and misunderstood. I was diagnosed with Ankylosing Spondylitis (AS) on 11/11/11. Although Ankylosing Spondylitis is a common disease, it remains unseen and unknown by both the public and medical practitioners. My art is how I make my story visible.

My paintings employ layers of text and image to capture the multifaceted identities we have as patients. Patients living with chronic, incurable diseases rarely fit into healthy-sick binaries. With illnesses often invisible and oscillating in symptoms and magnitude, patients find themselves in limbo, betwixt and between sick and healthy. By creating a third box, an “other,” I aim to make this complex identity visible.

In my photography, I show the intersection between the finite and the infinite nature of chronic disease. These body scans are dissected into disconnected body parts: my brain, my spine, my heart, my vertebra. As a patient, I have often felt that my body parts are seen as fragments to be analyzed in separate glass boxes. However, in sum, my boxes represent the connections between my body and mind.

Biography 

Sal Marx is a multimedia artist who works to illuminate human experiences with chronic disease and advocate for patient-centered change. Living with Ankylosing Spondylitis, an invisible, underrepresented disease, she uses her personal story as a visual data point in the context of a much broader healthcare crisis. Marx studied Public Policy, Psychology, and Media Studies at Pomona College. She is based in Brooklyn, NY.

On December 5th, at a live storytelling event hosted by Health Story Collaborative and WBUR CitySpace, we heard stories from three courageous women parenting in the face of life-threatening illness. You can watch the video of the event here. 

Lila, 45, is a psychotherapist by training and the mother of two daughters, ages 8 and 11. She has stage 4 lung cancer and each day she is practicing the difference between “choosing to live rather than trying not to die.”

Caroline, 35, is a writer and the mother of two sons, ages 4 and 7. She is living with glioblastoma—the most aggressive form of brain cancer—and was given a life expectancy of one year when she was diagnosed in 2017. She used to only write cookbooks but just published a children’s book with her sons in mind. Her message: “Whether or not Mommy’s body survives, my love is permanent and will shape them forever.”

Betsy, 42, a chemistry professor, lost her husband Chris to glioblastoma - the same cancer that Caroline has - in January 2019. She has not only been grieving his loss, but forging ahead as a now single parent 

What questions have they been grappling with? How do they care for themselves and their children? What lessons have they learned?  Their wisdom transcends illness and parenting and is relevant to all of us as human beings.