This Really Isn’t About You by Jean Hannah Edelstein
This was the book I wanted Places I Stopped on the Way Home to be: a wry, bittersweet look at the unpredictability of life as an idealistic young woman in the world’s major cities. Edelstein’s memoir also fits into several of my favorite subgenres: it’s a family memoir, a medical memoir and a bereavement memoir all at once. The story opens in Brooklyn in February 2014 as Edelstein, age 32, is trying to build an adult life back in America after 14 years in London and Berlin. Two years earlier her father had told her via Skype from Baltimore that he had lung cancer, and she returned to the States to be closer to help. But when the moment came, she was still unprepared: “if someone had said to me: What would you like to be doing when your father dies? I would not have said, I would like to be looking for love on OKCupid. But I did not have the luxury to make that decision. Who does?”
Her father never smoked yet died of lung cancer; his mother had colon cancer and died at 42. Both had Lynch syndrome, a genetic disease that predisposes people to various cancers. Six months after her father’s death, Edelstein took a genetic test, as he had wanted her to, and learned that she was positive for the Lynch syndrome mutation. The book’s structure (“Between” – “Before” – “After”) plunges readers right into the middle of the family mess, then pulls back to survey her earlier life, everything from childhood holidays in her mother’s native Scotland to being a secretary to a London literary agent who hated her, before returning to the turning point of that diagnosis. How is she going to live with this knowledge hanging over her? Doctors want her to have a prophylactic hysterectomy, but how can she rule out children when she doesn’t yet have a partner in her life?
So many aspects of this book resonated for me, especially moving between countries and having a genetic disease in the family. Beyond those major themes, there were tiny moments that felt uncannily familiar to me, like when she’s helping her mother prepare for an online auction of the contents of the family home in Maryland, or comparing the average cleanliness and comfort of rental properties in England and the States. There are so many little memorable scenes in this memoir: having an allergic reaction to shellfish two days after her arrival in the States, getting locked out of her sublet and having to call an Uzbek/Israeli locksmith at 3 a.m., and subsisting on oatmeal three times a day in London versus going on all-expenses-paid trips to Estonia and Mauritius for a conference travel magazine.
This is a clear-eyed look at life in all its irony (such as the fact that she’s claustrophobic and dreads getting MRI tests when it was her own father, a nuclear physicist, who built the world’s first full-body MRI scanner at Aberdeen) and disappointment. I’m prizing this as a prime example of life writing that’s not comprehensive or strictly chronological yet gives a clear sense of the self in the context of a family and in the face of an uncertain future.
My rating:
Readalikes:
The Family Gene by Joselin Linder
My Salinger Year by Joanna Rakoff
Mrs Gaskell & Me by Nell Stevens
Favorite lines:
“when I was in London, … I wondered if the problem of having my whole life ahead of me, free and clear and open for anything, was that having an unlimited number of options made the chance of choosing the wrong thing so high.”
“I was not yet old enough to realize that I’d never really know, that there would never be a time when I could think: I am here. This is me, without becoming uncertain again a moment later.”
“When I lived in England I drank a lot of tea, many cups a day, even though I didn’t like it. I learned quite fast after I arrived in London that drinking tea was an important way to connect with people: when I went over to their homes, or if we worked together in an office. Being offered a cup of tea meant that you were being offered an entry to something, and accepting it was important.”
This Really Isn’t About You was published by Picador on August 23rd. My thanks to the publisher for the free copy for review.
Medical Mysteries: Joselin Linder’s The Family Gene
Yes, another memoir on a medical theme! I really do read a lot of them. My eye was drawn to The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future by Joselin Linder because of the medical mystery aspect: 14 members of Linder’s Ashkenazi Jewish family are the only known exemplars of their particular genetic disease, so rare it doesn’t have a name or surefire treatment protocol, but now at least has a location on a chromosome.
Linder’s awareness of her family’s peculiar medical problems began when her father, William, himself a doctor near their home in Columbus, Ohio, started having a persistent build-up of lymph (also known as chyle) in his abdomen – usually a sign of heart or liver failure. At one point doctors tapped four liters of the stuff from his lungs. Her father’s illness threw Linder, then a junior in college, for a loop; drugs and music started to replace academics. After he died, aged 49, in September 1996, she became a nomad, moving from Prague to San Francisco to Brooklyn and dabbling in different careers.
Only gradually did they all realize that the same thing had happened to William’s uncle, Nathan, in the 1960s and his grandmother, Mae, before that. While Mae lived to age 54, Nathan died at 34, even after treatment at NIH. Along with the lymphedema, a heart murmur was a common factor. William’s brother, Norman; Linder and her older sister, Hilary; and various cousins of their generation were diagnosed in this way. The author’s own symptoms were initially easily to ignore – swollen ankles and a low platelet count – but escalated in her thirties: a blocked vein in her liver meant she was in danger of bleeding out if she vomited.
It’s rare to be able to trace a genetic disease from its founder through to the present. In Linder’s case, her great-great-grandmother, Ester Bloom, is the first known sufferer. Researchers eventually isolated their family’s gene on the X chromosome, near the location for asthma. This explained why, historically, female family members had a better prognosis than males – they have one normal X chromosome and one diseased one; men only get the defective X chromosome – and why asthma medication helped to an extent.
There are a couple of chapters here on the basics of genetics that felt a little condescending to me; for anyone with a high school or A level biology qualification, the simplistic metaphors explaining the workings of DNA may seem superfluous. I also had trouble relating to Linder’s immediate reaction to her father’s death. Although he’d been severely ill for years by then, her attitude still seems a little heartless. Of the decision to take him off dialysis, she writes, “I was on board. It was time to call it a day.” When the family went around expressing opinions, she said, “I think it’s time, Dad. You’ve been through so much,” to which he replied “F— you”! An ex-boyfriend’s suicide a couple years later affected her much more than her own father’s death. Grief affects people in strange and unpredictable ways, I guess.
What I most appreciated was how the book sensitively reveals the ways a genetic condition complicates life, especially in America: Linder had to do without health insurance for 10 years, having been denied it in Ohio on the grounds of a pre-existing condition. In addition, she and her sister faced a quandary common to those who carry genetic diseases: should they have children? While Hilary underwent pre-implantation genetic diagnosis, a form of IVF, to bear healthy twins, Linder ultimately decided against having children.
I enjoyed the earlier part of this genetic quest narrative a bit more than the later material about Linder’s symptoms. Still, I can recommend this to viewers of House and readers of Susannah Cahalan’s Brain on Fire and the like.
The Family Gene is released by Ecco today. With thanks to Beth Parker and James Faccinto for the electronic review copy via Edelweiss.
My rating: