The woman who smelled Parkinson's

I found Joy's naive quiver intensely endearing, but I, like many others, was a little terrified of her nose. Radio journalist Alix Spiegel met Joy several years ago for an article on NPR. Alzheimer's, which Joy can detect, runs in Spiegel's family. “If she smelled it, would I be able to tell?” Spiegel wondered in her report. “How good was her poker face?” It is Joy's policy not to reveal disease odors to people she meets, and she kindly evaded Spiegel's questions. Whatever the reason, she was more direct with me. One morning, in her living room, she commented, offhand, about my “strong masculine scent.”

I was horrified. “I didn't mean to bring this up,” I said.

“No, no, it's not like that,” Joy assured me. “It's a normal male odor, almost like salt and some chemicals. And it's sharp, but profound. It's when it gets to that creamy smell and loses that spiciness that I start to think, “Oh, what's wrong?”

It was a relief to receive a clean bill of health. (Given Joy's usual policy of nondisclosure, I wondered if she was telling a lie for good reasons, but ultimately concluded that she wouldn't tell me one without prompting.) On the other hand, it was disconcerting to know that she had been smelling me completely. Our notions of privacy are calibrated to the sensory capabilities of the average other person. We learn to live with the reality that, if someone is just a few feet away, they might be able to see the little pimple on our chin, or smell our breath, or perhaps hear the swash of our saliva. But we assume that at a slightly greater distance we are safe, that these intimate embarrassments will go unnoticed. I'm happy to say that I'm not a smelly person, or so I've been told, but it was hard not to worry about what else besides my “man smell” might be accessible to Joy's nose. Nor is it always simple for Joy. She smells the disease everywhere, without looking for it: at the checkout of Marks & Spencer, on the street, on her friends and neighbors.

When we met, Joy informed me that Les' mother was not the only other family member who had been diagnosed with Parkinson's. So, she eventually discovered, there was also Les's maternal grandfather, her maternal uncle, her estranged younger brother. It was evidently a hereditary form of the disease and, given its incidence in Les's family, almost certainly an autosomal dominant form, i.e. a form that would most likely have manifested itself in her children. In all likelihood, at least one of her and Joy's three children would have inherited the gene.

Joy refused to discuss any genetic testing her children may have undergone, and although she promised several times to get in touch with them, she never did. I saw no dignified reason to press the matter any further. In the abstract, however, I can easily imagine them – the fathers themselves – choosing to remain in the dark about their heritage and their likely fate, as they choose to learn it. “Some of us like to feel the wind of providence in our faces, others like everything that is planned,” write jurists Herring and Foster. “Every person should have the opportunity to choose how to face their future.” Joy, of course, will have no such choice. The wind of providence always blows; his nose can't help but make out whatever tragedy may be floating on it. Whatever her wishes are, she will be made aware of them.

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