In Recovery
Open AccessIn Recovery (2022) is a MFA Social Practice thesis project documenting my experience receiving a preventative double mastectomy and exploring how community care networks function in place of the medical industrial complex. At age 15, I tested positive for the BRCA 1 genetic mutation, which gives carriers, on average, an 87% lifetime risk of developing breast cancer and a 63% risk of developing ovarian cancer. The test result was not a shock, both my mom and grandma were BRCA positive and had died of ovarian cancer. In my extended family, across generations, there were many women who had developed breast cancer. Soon after I began diagnostic testing at age 25, I learned that I have highly “dense” breast tissue. Diagnostic scans showed unidentifiable masses in my breasts, leading to additional tests and biopsies to ensure these “densities'' were not cancerous. Because my insurance did not cover the high cost of these tests, the emotional stress, and the high cancer risk, I decided that a prophylactic double mastectomy was the route I wanted to pursue.Many people with BRCA 1 and other similarly dangerous genetic mutations are navigating their own health care in the context of traumatic childhood experiences with illness and caretaking of a close loved one, often a parent. As a caretaker to my mom, I was responsible for tracking her doctors’ appointments, managing her medications, and was often alone at home while she was hospitalized. Despite and because of the presence of illness in our home, my mom taught me to live fully, create joy and pursue my dreams regardless of circumstances, however difficult. When the time came to face my own dangerous health condition, I chronicled my experiences through writing, photographs, sculptures, and conversations.
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RubensteinEdberg_gwu_0075M_16144.pdf | 2022-10-04 | Open Access |
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