I found Joy’s spontaneity very endearing, but I, like many others, was a little afraid of her nose. Radio journalist Alix Spiegel met Joy several years ago for an NPR story. Alzheimer’s, which Joy can detect, runs in Spiegel’s family. “If she smelled it, could I tell?” asked Spiegel in its report. “How good was her poker face?” It’s Joy’s policy not to reveal odors of illness to people she meets, and she politely avoided Spiegel’s questions. For whatever reason, she was more direct with me. One morning in her living room, she casually commented on my “strong masculine scent.”
I was stunned. “I wasn’t going to mention that,” I said.
“No, no, it’s not like that,” Joy assured me. “It’s a normal male smell, almost like salt and some chemicals. And it’s sharp, but deep. When it gets to that creamy smell and loses that sharpness, I start thinking, Oh, what’s going on?’
It was a relief to receive a clean bill of health. (Given Joy’s usual no-disclosure policy, I wondered if she might be telling me a white lie, but ultimately concluded that she wouldn’t have offered one unprompted.) On the other hand, it was embarrassing to know that she was smelling me at all. Our perceptions of privacy are calibrated to the sensory capacities of the average other person. We learn to live with the reality that if someone is just a foot away, they can see the tiny pimple on our chin or smell our breath or maybe hear our saliva. But we suppose that at a slightly greater distance we are safe, that these narrow embarrassments will pass unnoticed. I’m happy to say that I’m not a stinky person, or so I’m told, but it was hard not to worry about what else, other than my ‘man smell’, might be accessible to Joey’s nose. Nor is it always simple for Chara. She smells disease everywhere, without looking for it: at the checkout at Marks & Spencer, on the street, on her friends and neighbors.
When we met, Joy informed me that Les’s mother was not the only other family member diagnosed with Parkinson’s. So, eventually, he found out that he was Les’ maternal grandfather, his maternal uncle, his distant younger brother. It was apparently an inherited form of the disease and, given its frequency in Les’s family, almost certainly an autosomal dominant form, i.e. a form that would most likely be passed on to his children. In all likelihood, at least one of his and Joy’s three sons would have inherited the gene.
Joy refused to discuss any genetic testing her sons may have had, and although she promised several times to put me in touch with them, she never did. I saw no decent reason to press the matter further. In the abstract, however, I can just as easily imagine them—the fathers themselves—choosing to remain ignorant of their heritage and possible fate as they are choosing to learn it. “Some of us like to feel the wind of providence in our faces, and others like things planned,” write legal scholars Herring and Foster. “Every person should be able to choose how they approach their future.” Joy, of course, will have no such choice. The wind of providence always blows. Her nose can’t help but pick out whatever tragedies might be floating about. Whatever her own desire is, she will be made to learn.
