Data artist and TED Fellow Salvatore Iaconesi has given us a manifesto—he has been diagnosed with brain cancer [glioma, a tumor] and is seeking a cure. But not necessarily a traditional cure. Iaconesi is calling for cures not only for the body, but also for the spirit and for personal transformation. Unlike the highly guarded HIPAA* compliant medical records that US patients themselves often have difficulty gaining access to, Iaconesi decided to crack his own files and create an open format that anyone who wants to read them can. CT scans, MRIs, laboratory notes, and his diagnosis of glioma are available on a website, La Cura, created by Iaconesi. His intention is that we use these records in whatever way we want to and creatively. But in particular, his “Open Source Cure” invites us to offer something of value to an individual who is confronted with the ultimate existential situation, one that most of us would prefer to ignore.
Iaconesi’s request intrigues me because it simultaneously embraces all forms of healing arts, in addition to medical advice. He suggests that we can “create a video, an artwork, a map, a text, a poem, a game, or try to find a solution to my health problem. Artists, designers, hackers, scientists, doctors, videomakers, musicians, writers.” By going beyond the walls of hospitals and physicians’ offices, Iaconesi challenges each of us to use his medical information plus imagination to create something of meaning in response to his diagnosis.
This was a tall order for me as an art therapist. Glioma is a serious condition and having worked with medical patients faced with brain cancers, I know some of what he is up against. But I also believe that although a medical cure may not always be possible, there is another version of a “cure” that is. As I described in a recent post, we can re-author the dominant narrative of illness, within ourselves and with the help of others, and in turn remain whole despite illness. It’s about living life on our own terms and with grace, gratitude and a sense of peace. But La Cura is not only about the possibility for wholeness as a person with cancer, it is also about the transformative potential we can find through opening ourselves to another’s challenges, trauma or loss. As I emailed a copy of artwork I created in response to Iaconesi’s Open Source Cure tonight, I also gratefully discovered a little of that cure within myself.
Cathy Malchiodi, PhD, LPAT, LPCC, ATR-BC
*HIPAA stands for Health Insurance Portability and Accountability Act that provides rules and regulations for protection of patient medical records.
**About the image: "Referral for Your Beautiful Brain: Archive 1," paint and mixed media on photo print of a brain scan; inspired by the work of Elizabeth Jamieson who uses neuroimaging technologies to create art in response to her medical condition and her changing brain. See http://thebeautifulbrain.com/2011/04/gallery-elizabeth-jameson-spring-2011/