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kottke.org posts about Laura Hillenbrand

Meet the Long-Haulers, Whose Covid-19 Symptoms Last For Months

posted by Jason Kottke   Aug 20, 2020

In the Atlantic, Ed Yong checks back in with the long-haulers, people who are still experiencing Covid-19 symptoms months after their initial infection. (Read his previous article from early June.)

Lauren Nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.

As Yong says in a thread about the article: “The pandemic is going to create a large wave of chronically disabled people.” Once again for the people in the back: this is not just the flu. The flu does not incapacitate otherwise healthy people like this. I know at least two long-haulers personally and am astounded on a daily basis by how casually some Americans continue to regard Covid-19.

More than 90 percent of long-haulers whom Putrino has worked with also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.

You can read Seabiscuit author Laura Hillenbrand’s excellent article on her chronic fatigue syndrome diagnosis and how difficult it is for people with chronic conditions like this to get the right diagnosis and to get family and friends to believe what’s going on.

Also, Yong should win all the awards this year for his pandemic coverage. It has been simply outstanding.

The unbreakable Laura Hillenbrand

posted by Jason Kottke   Dec 31, 2014

Wonderful piece on Laura Hillenbrand, author of Seabiscuit and Unbroken. Hillenbrand has suffered from chronic fatigue syndrome for more than 25 years and can barely leave her own house, but she has turned her illness into an advantage in some ways.

Somehow, through the dizziness and disorientation, Hillenbrand has managed to produce two of the most critically and commercially successful nonfiction books in recent decades. “Seabiscuit” and “Unbroken” have together sold more than 10 million copies, and the hardcover edition of “Unbroken” remained on The Times’s best-seller list for 185 continuous weeks, which by some accounts is the fourth-longest reign of all time. In fact, the hardcover was so successful that Hillenbrand’s publisher, Random House, waited nearly four years before releasing a paperback edition this summer; since then, the paperback has held the top position on The Times’s list every week except one. Sallye Leventhal, the book buyer for history and politics at Barnes & Noble, told me that Hillenbrand’s commercial success is unparalleled. “There are other phenomenal best sellers, but not this phenomenal,” she said. “Not with this velocity, year after year after year.”

What’s startling to consider is that Hillenbrand has done this with little access to the outside world. She is cut off not only from basic tools of reporting, like going places and seeing things, but also from all the promotional machinery of modern book selling. Because of the illness, she is forced to remain as secluded from the public as the great hermetic novelists. She cannot attend literary festivals, deliver bookstore readings or give library talks and signings. Even the physical act of writing can occasionally stymie her, as the room spins and her brain swims to find words in a cognitive haze. There have been weeks and months — indeed, sometimes years — when the mere effort to lift her hands and write has been all that she can muster. “In the middle of working on ‘Unbroken,’” she told me, “I went just off a cliff and became very suddenly totally bedridden — I didn’t get out of the house for two years.” To function as an author, Hillenbrand has been forced to develop a unique creative process. Everything in her working life is organized around the illness: the way she reads, the way she thinks about language, even the way she describes familiar places. When Hillenbrand writes about the “rough, rasping tremor” of the Pacific and the “smoky brown oval” of Pimlico, her readers feel closer to the ocean and the racetrack than Hillenbrand is ever likely to be again.

After you read that, check out Hillenbrand’s piece on her illness written for the New Yorker in 2003.