Polly Murray, in the 1960s and ’70s, was a mother of four with an old house on several acres in Lyme, Connecticut. In the summer, her kids built forts in the woods; they ice-skated on frozen cow ponds in the winter. The Murrays had an idyllic life in the country. They also had enormous rashes, strange joint swellings, and recurrent fevers.
[…]
Soon, though, Murray started to hear other stories like hers. Her area, it appeared, had a cluster of juvenile-rheumatoid-arthritis cases. She called the state’s health department and met with Dr. Allen Steere, a rheumatologist doing a fellowship at Yale. He pored over her pages of notes. On the car ride home, Murray wept with joy: Steere didn’t have any answers, but he had listened. He wanted to find out what was wrong. By 1976, the condition Murray had observed had become known as Lyme disease.
“Lyme disease was a disease born of advocacy,” Dr. Paul Auwaerter told me. Auwaerter, whose lab focuses on Lyme and other tick-borne diseases, is the clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine. Back in the ’70s, Murray and her fellow Connecticut mothers had to fight for attention. Their experience left behind a powerful legacy, Auwaerter said, a sense that perhaps “the medical establishment didn’t really listen initially or were trying to be dismissive.”
Decades after Polly Murray kept her diary of symptoms, the spirit of advocacy associated with Lyme disease endures. But while Murray’s efforts were ultimately vindicated by medical science, a new fight — for the recognition of something known as “chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite — has grown into a phenomenon often untethered from scientific method or peer review. The chronic-Lyme community has a new agenda, one that was visible at last fall’s Global Lyme Alliance Gala in New York, where supporters gathered at Cipriani heard a speech from Real Housewife of Beverly Hills Yolanda Hadid.
[From https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html]
—
Longform
journalistic piece are, as their name suggests, long. The ones I am talking
about take at least half an hour to read and are often crafted non-linearly,
requiring the reader to pay attention, actually exert him or herself, as
opposed to needing only a cursory browse the way a news story or a short
opinion piece might. Writers, for their part, can spend months, even years,
researching, reporting, and writing these pieces.
Because the
topics are generally out of the public view, the title may not be immediately
motiving to a reader. So the onus on the writer to keep the reader engaged, to
have them read from start to finish with the attention such a piece requires,
becomes crucial within the first several paragraphs in a way that makes it
unique from other forms of journalism.
One of my
favorite articles from this summer is by Molly Fischer. The article is called
“Maybe It’s Lyme. What happens when illness becomes an identity?” The article
was sent to me by a friend, so despite knowing nothing about the topic, I
decided to start it anyway. I think it does a phenomenal job of introduction by
suffusing it with motive—with what makes the topic at hand interesting, with
why the reader should continue reading.
Immediately
we are taken with an idyll and its strange, pathological underbelly, a mystery
that needs an answer. And even where one is given at the end of the second
paragraph cited, we find that that answer is itself the starting point that has
since burgeoned into many more questions. By giving the history of the
discovery of Lyme disease, the author is able to not only define her most
central term but to contextualize it especially as its definition is repeatedly
challenged and complicated. In this way, Fischer is able to use her key term to
further motivate her article, carefully and seamlessly integrating her
instantiations of the two lexicon terms.
— Tess Solomon ’21
