And then it did.
Over the past year or so, Barbara’s ability to walk, talk and think has diminished, albeit intermittently. I say “intermittently” because at times she is lucid. There are moments when she is very self-aware and seems like her former self. But there are other times when she gets lost, standing in her own living room, and asks my father-in-law, “Where am I?”
Then, just to complicate matters, we embarked on a big family trip to Sicily. When I look back, the decision seems rather, well, insane. But we had our reasons. It was my father-in-law’s 70th birthday. It was his dream to bicycle in Italy, and this man, who has been such a selfless caregiver for over a decade, deserved a dream come true more than any other human being I know. My mother, in a touching act of generosity, arranged the whole thing. It was like a screwball comedy, set in a lovely seaside villa. The cast included me, my parents, my wife, our teenage kids and my in-laws. The first night, we had dinner on the patio, by the pool. That’s when everything started to go haywire.
That night, Barbara seemed more disoriented than ever. Her vision became so bad that she could neither walk nor see well enough to read. My wife, who is a doctor, became convinced that Barbara would need brain surgery upon her return to the United States to drain the excess fluid in her brain. “Maybe so,” I told her, “but why don’t you and your dad take a bicycle ride this morning? I mean, we’re here in Sicily.”
Reluctantly, my wife agreed. I promised to sit on the couch with Barbara and keep her company. We started chatting about bananas. For some reason, that morning, Barbara was obsessing about bananas. She does this from time to time: focus relentlessly on a single, rather mundane subject.
I eventually asked Barbara if she still had interest in writing about her life and the functions of her own brain. Barbara told me that with her impaired vision, she couldn’t really see a computer screen. So writing was very difficult. On a whim, I asked her if she would like me to interview her. We could, in effect, re-enact the event that we’d done at the Rubin Museum, only there would be no audience. Just us. Barbara seemed delighted by the idea. I whipped out my phone, hit record and started asking questions.
