Patient as Monster

If every illness is a monster, every patient carries that monster inside him. When I was diagnosed with a rare blood disease over 30 years ago, I was told the median age from diagnosis to death was less than ten years. So I’m going to talk about how living with my monster, in a marriage of sorts, has changed my relationship to the future, my body, and how I see myself in my doctor’s eyes. What do my doctors see when they look at us? More importantly, what are we hoping that they don’t see? And given my long relationship with my monster, why would we risk our fragile equilibrium by traveling to places like Mogadishu, Lebanon, Syria, Iraq, Libya, Jordan, and Kenya to write about refugees?