In last week’s Reading List, I wrote about Eula Biss and her new book, On Immunity: An Inoculation. It is a meditation on the United States, disease, race and motherhood, using vaccination as a metaphor/catalyst. With that on my mind, this week’s list is about diseases—four essays about Ebola, Parkinson’s and more.
1. “My Mother, Parkinson’s and Our Struggle to Understand Disease.” (N. Michelle AuBuchon, Buzzfeed, July 2014)
In a combination of memoir and science writing, from her father’s careful logs to the books she reads to her ailing mother, AuBuchon comes to realize “we come from people who listen and people who believe in stories, because stories are the only thing getting them from one moment to the next.”
2. “One of a Kind.” (Seth Mnookin, The New Yorker, July 2014)
Bertrand’s family felt alone in the universe, until his father’s blog post went viral and united families from around the world suffering from a super-rare disease. This piece and #3 pair well together, as they both discussed the power of the internet and diagnoses, the screening of exomes, the unfortunate and bureaucratic world of research and publication in the scientific community and the hope of a new database that will allow the public to find their fellow diagnosees.
3. “DIY Diagnosis: How an Extreme Athlete Uncovered Her Genetic Flaw.” (Ed Yong, New Statesman, August 2014)
With time, dedication, and a few months of med school 30 years behind her, Kim Goodsell uncovered the link between her two diseases. Then, she needed to convince her doctors.
4. “Nature’s Most Perfect Killing Machine.” (Leigh Cowart, Hazlitt, July 2014)
No word conjures gore and fear quite like Ebola: “What we do know is that of the six known ebolaviruses, five can cause disease in humans. We know that the disease is transmitted by contact with the blood or bodily fluids of an infected animal … Oh, and my favourite fact: we know that you can kill it with soap.”
5. “Little Man and the Pursuit of Happiness.” (Jessica Lipscomb, Naples Daily News, August 2014)
“Anaplastic astrocytoma,” he’d say, annoyed. “Pronounce the word, people. It’s not that hard.” Ethan Arbelo, 12, has a rare malignant brain tumor, and his mom, Maria Maldonado, is his commander-in-chief, best friend and biggest advocate. This piece documents a mother’s valiant attempt to fit in the joys of adulthood before her “little man’s” time to “transition.” Ethan is not the idealized cancer victim–he’s a boy on the edge of puberty trapped in a tragic situation. And Maria, caring for her son alone, is a former Marine with a penchant for all the military metaphors scientists avoid. I’ve yet to read reporting that breaks down the stereotyping of the cancer narrative like Lipscomb’s. It still made me cry.
Photo of Ebola Particles: NIAID