I found Joy's pure excitement endearing, but like many others, I was a little intimidated by her nose. Radio journalist Alix Spiegel met Joy a few years ago while working on an NPR story. Joy can detect Alzheimer's, but Spiegel has a family history of the disease. “If she could smell it, would I know?” Spiegel wondered in her report. “How well would she keep a poker face?” Joy, who has a policy of not revealing her disease's smell to anyone she meets, politely dodged Spiegel's question. Whatever the reason, she was more direct with me. One morning in her living room, she commented, unsolicited, on my “strong masculine smell.”
I was stunned. “I never meant to bring this up,” I said.
“No, not at all,” Joy assured me. “It's a normal guy's smell, like salt and a few chemicals, and it's sharp but has depth. And then when it gets creamy and the sharpness goes away, I start to think, 'Oh my God, what's wrong?'”
I was relieved when the medical check came back clean. (Joy has always been secretive, so I worried she was telling me white lies, but I eventually concluded that she couldn't possibly be lying on purpose.) On the other hand, it was unsettling to know that she had been smelling me. Our concept of privacy is calibrated to the sensory capabilities of the average stranger. We learn to live with the reality that if someone stands just a foot away, they might see a tiny pimple on your chin, smell your breath, or hear the sound of your saliva running. But we think that a little distance away would be safe, that these private embarrassments would go unnoticed. I'm not a smelly person, I've been told, but I couldn't help but worry that there was something other than my “man smell” that was reaching Joy's nose. It's not always easy for Joy. She smells disease everywhere – at the tills at Marks & Spencer, on the street, on friends and neighbors – but she doesn't go out of her way to seek it out.
When we met, Joy told me that Les' mother wasn't the only person in his family to be diagnosed with Parkinson's. Joy had researched it, and found that Les' maternal grandfather, maternal uncle, and estranged brother had also been diagnosed with the disease. His Parkinson's is clearly hereditary, and the high incidence in Les' family means it is almost certainly autosomal dominant, meaning that his children are more likely to develop it. It's likely that at least one of his and Joy's three sons will have inherited the gene.
Joy refused to discuss any genetic testing her sons might have had, promising on multiple occasions to put me in touch with them but never did. I saw no justification for pursuing the issue any further. But in the abstract, it is easy to imagine fathers choosing to remain ignorant about their heritage and their likely destinies as much as they choosing to know. “Some of us want to feel the wind of divine will on our faces; others prefer that everything go according to plan,” write legal scholars Herring and Foster. “Each person should be able to choose how to approach his or her own future.” Of course, Joy has no such choice. The winds of divine will are always blowing. Her nose is always on the alert for any tragedies that drift along on them. Whatever her own wishes, she will know.