Brave? Did Berni just call me brave? Our phone conversation had drifted from neighborhood news to weather to my latest ‘constellation of health issues’ as my primary physician had named them. I want to swap topics. Instead of delving into the mysterious realm of things beyond my control let’s talk more about writing. Despite the setbacks, I’m still on track for completing Smiling Is Not Resilience by year’s end. I’m looking forward to doing a book reading at Intermedia Arts in December. I’m grateful for the writing grant that brings me a step closer to completing this eight year work-in-progress.
Berni presses on though, inquiring if physicians at University of Minnesota Clinics know more than the endless stream of rheumatologists, dermatologists, cardiovascular specialists, renal specialists, pulmonary specialists, and hematologists at Allina Hospitals and Clinics. I take a deep breath and give a matter-of-fact recount of the upheaval my nonspecific and undiagnosed autoimmune disease has added to the months past and days ahead. I tell of invasive medical tests, medication trials and their harrowing side effects, frustrations coordinating care and getting to appointments, swimming to lessen my ever faithful companion pain, wonderful but limited support from family and friends, and my DO NOT RESUSCITATE status as I struggle through full time work that daily brings me face to face with hurting people with more challenges and less resources than I have.
“You’re so brave.” Berni says again. I tense up, bite my tongue. I want to chastise her for leaning on that patronizing language where being alive is brave, human kindness heroic, any non fatality—no matter how damaging—a miracle.
Brave. I’m not brave. If talking makes me brave, then nights when I lay crying and moaning and wishing for death makes me a coward.
I’m neither a coward nor am I brave. I’m…just…here.