Remembering the late 1990s:
I was transferred from a local hospital to a Philadelphia-based teaching hospital, which had a specialist that I would need to consult. I had hoped to go via ambulance - I had so many fears - but instead went with my parents. I remembering driving up and seeing the immense, slow-moving revolving door. It was terrifying - slow, unceasing, and mindless. It seemed a metaphor for my condition. Slowly unraveling and slowly unfolding and seemingly without reason despite my wishes otherwise.
My diagnosis was given by a young, ace neurosurgeon. As he explained my condition, he was flanked by two other young people in lab coats, who were probably exhausted medical school students. The trio stood silently watching me as I took in the information. They were still. I don’t remember if I cried. I wanted one of them to say something kind or human. They didn’t.
How could just a few sentences be all they could say? Nothing more? Wasn’t this the most monumental set of sentences someone had ever said to me? Not wanting the most monumental conversation of my life to also be the briefest, I asked questions. Not because I wanted to know anything else but because I wanted the thread connecting me to the people that were going to help me to be strong. I asked not monumental questions, just any question I could think of to keep the conversation going, hoping to feel some human connection.
I was hoping to hearing something like “This is a surprise. To be young and have your health status suddenly change.” or “We have experts here to answer your questions as they arise.” or “Your are in the hospital, where we can begin to sort this out.” Something simple. No need for a commitment. No need for drama. No need to say anything lawsuit-worthy, such as thou shalt be cured. No, just something kind.