Wednesday, June 13, 2012

My Three Names

Last night, one of my BRCA sisters sent me this link to a TEDMED 2012 talk by Dr. Ivan Oransky, executive editor of Reuters Health.  In it, he criticizes this country’s broken healthcare system and doctors who diagnose such conditions as “pre-diabetes,” “pre-hypertension” and “pre-acne” because they are incentivized to order tests, perform procedures and prescribe drugs.  Not quite six minutes into the 10-minute video, Dr. Oransky describes “previvors” as what a “particular cancer advocacy group would like everyone who just has a risk factor, but hasn’t actually had that cancer to call themselves.”  He then suggests a “Previvor” reality television show in which participants who develop a particular disease are voted off the island.

His remarks demonstrate a deplorable lack of knowledge about cancer genetics, outrageous insensitivity to individuals and families affected by BRCA gene mutations, and a horribly distasteful and dismissive attitude toward those in the hereditary breast and ovarian cancer (HBOC) community.

Dr. Oransky’s comments bring to mind this Jewish teaching:
Every person has three names:
One her father and mother gave her,
one others call her,
and one she acquires herself.
Given the opportunity, here’s what I’d tell Dr. Oransky about my three names:

My father and mother named me Jane Ellen.  My name in Hebrew is Yehudit bat Reuven v'Dina.

Others call me many things:  Jane, Jane-O, Hane, JanetheWriter, daughter, sister, niece, colleague, friend.  

Among the numerous names I’ve acquired for myself, one is “previvor.”  Unlike “New Yorker,” “graduate student” or “writer,” though, it’s one I didn’t want, one I wouldn’t wish on my worst enemy, and one that has caused me deep physical and emotional scars.  At the same time, I’m lucky to have discovered my status as a “previvor,” grateful for the science and technology that make “previving” possible, and satisfied with the tough choices I’ve made to remain a “previvor.” 

Most of all, though, I’m incredibly proud to belong to a community of caring, giving, supportive women and men who—regardless of what, if anything, we individually or collectively choose to call ourselves—bring to bear outstanding knowledge and information, strong self-advocacy, cutting-edge research, and thoughtful, calculated decisions about medical and surgical interventions, all of which we use to save our own lives.