Tuesday, July 23, 2024

The Woman Who Could Smell Parkinson’s

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I found Joy’s ingenuous thrill to be strongly endearing, but I, like many others, was also a bit terrified of her nose. The radio journalist Alix Spiegel met Joy several years ago for a story on NPR. Alzheimer’s, which Joy can detect, runs in Spiegel’s family. “If she did smell 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 disclose disease odors to the people she meets, and she politely evaded Spiegel’s questions. For whatever reason, she was more direct with me. One morning in her living room, she commented, unbidden, upon my “strong male scent.”

I was aghast. “I wasn’t going to bring this up,” I said.

“No, no, it isn’t like that,” Joy assured me. “It’s a normal male smell, almost like salt and a few chemicals. And it’s sharp, but deep. It’s when it gets to that creamy smell, and loses that sharpness, that I begin to think, Oh, what’s wrong?”

It was relieving to receive a clean bill of health. (Given Joy’s usual nondisclosure policy, I did wonder if she might be telling me a white lie, but I concluded, eventually, that she would not have offered one unprompted.) On the other hand, it was discomfiting to know that she had been smelling me at all. 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 foot away, he or she may be able to see the tiny 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 pass undetected. I am pleased to say that I am not a smelly person, or so I am told, but it was hard not to fret about what else, beyond my “male smell,” might be accessible to Joy’s nose. Nor is it always straightforward for Joy. She smells disease everywhere, without seeking it out: in 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 member of the family to be diagnosed with Parkinson’s. So too, she eventually discovered, were Les’s maternal grandfather, his maternal uncle, his estranged younger brother. His was evidently a hereditary form of the disease and, given its incidence in Les’s family, almost certainly an autosomal dominant form, which is to say a form that would be quite likely to manifest in his children. In all probability, at least one of his and Joy’s three sons would have inherited the gene.

Joy declined to discuss any genetic testing her sons may have undergone, and though she promised several times to put me in contact with them, she never did. I saw no dignified reason to press the matter any further. In the abstract, however, I can just as easily imagine them — fathers themselves — choosing to remain ignorant of their inheritance, and of their likely fate, as choosing to learn it. “Some of us like to feel the wind of providence in our faces, and others like everything planned,” write the legal scholars Herring and Foster. “Each person should be allowed to choose how to approach his or her future.” Joy, of course, will have no such choice. The wind of providence is always blowing; her nose cannot help making out whatever tragedies may float upon it. Whatever her own wishes, she will be made to know.



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