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.
The Family Gene by Joselin Linder
My Salinger Year by Joanna Rakoff
Mrs Gaskell & Me by Nell Stevens
“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.
My 2018 Wellcome Book Prize Wish List
Tomorrow the longlist for the 2018 Wellcome Book Prize will be announced. This year’s judging panel is chaired by Edmund de Waal, author of The Hare with Amber Eyes. I hope to once again shadow the shortlist along with a few fellow book bloggers. I don’t feel like I’ve read all that many books that are eligible (i.e., released in the UK in 2017, and on a medical theme), but here are some that I would love to see make the list. I link to all those I’ve already featured here, and give review extracts for the books I haven’t already mentioned.
- I Found My Tribe by Ruth Fitzmaurice
- In Pursuit of Memory: The Fight against Alzheimer’s by Joseph Jebelli
- Goodbye, Vitamin by Rachel Khong
- In Every Moment We Are Still Alive by Tom Malmquist
- Admissions: A Life in Brain Surgery by Henry Marsh
- I Am, I Am, I Am: Seventeen Brushes with Death by Maggie O’Farrell: O’Farrell captures fragments of her life through essays on life-threatening illnesses and other narrow escapes she’s experienced. The pieces aren’t in chronological order and aren’t intended to be comprehensive. Instead, they crystallize the fear and pain of particular moments in time, and are rendered with the detail you’d expect from her novels. She’s been mugged at machete point, nearly drowned several times, had a risky first labor, and was almost the victim of a serial killer. (My life feels awfully uneventful by comparison!) But the best section of the book is its final quarter: an essay about her childhood encephalitis and its lasting effects, followed by another about her daughter’s extreme allergies.
- The Smell of Fresh Rain: A Journey into the Sense of Smell by Barney Shaw
- Fragile Lives: A Heart Surgeon’s Stories of Life and Death on the Operating Table by Stephen Westaby
It’s also possible that we could see these make the longlist:
- History of Wolves by Emily Fridlund: Fridlund’s Minnesota-set debut novel is haunted by a dead child. From the second page readers know four-year-old Paul is dead; a trial is also mentioned early on, but not until halfway does Madeline Furston divulge how her charge died. This becomes a familiar narrative pattern: careful withholding followed by tossed-off revelations that muddy the question of complicity. The novel’s simplicity is deceptive; it’s not merely a slow-building coming-of-age story with Paul’s untimely death at its climax. For after a first part entitled “Science”, there’s still half the book to go – a second section of equal length, somewhat ironically labeled “Health”. (Reviewed for the TLS.)
- Hair Everywhere by Tea Tulić
- Modern Death: How Medicine Changed the End of Life by Haider Warraich: A learned but engaging book that intersperses science, history, medicine and personal stories. The first half is about death as a medical reality, while the second focuses on social aspects of death: religious beliefs, the burden on families and other caregivers, the debate over euthanasia and physician-assisted suicide, and the pros and cons of using social media to share one’s journey towards death. (See my full Nudge review.)
Of 2017’s medical titles that I haven’t read, I would have especially liked to have gotten to:
- Sound: A Story of Hearing Lost and Found by Bella Bathurst
- This Is Going to Hurt: Secret Diaries of a Junior Doctor by Adam Kay
- With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix [I have this one on my Kindle from NetGalley]
- Into the Grey Zone: A Neuroscientist Explores the Border between Life and Death by Adrian Owen
- Patient H69: The Story of My Second Sight by Vanessa Potter
We are also likely to see a repeat appearance from the winner of the 2017 Royal Society Science Book Prize, Testosterone Rex: Myths of Sex, Science, and Society by Cordelia Fine.
Other relevant books I read last year that have not (yet?) been released in the UK:
- The Education of a Coroner: Lessons in Investigating Death by John Bateson
- The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future by Joselin Linder
- Last Things: A Graphic Memoir of Loss and Love by Marissa Moss
- Love and Laughter in the Time of Chemotherapy by Manjusha Pawagi
- No Apparent Distress: A Doctor’s Coming-of-Age on the Front Lines of American Medicine by Rachel Pearson: Pearson describes her Texas upbringing and the many different hands-on stages involved in her training: a prison hospital, gynecology, general surgery, rural family medicine, neurology, dermatology. Each comes with memorable stories, but it’s her experience at St. Vincent’s Student-Run Free Clinic on Galveston Island that stands out most. Pearson speaks out boldly about the divide between rich and poor Americans (often mirrored by the racial gap) in terms of what medical care they can get. A clear-eyed insider’s glimpse into American health care.
- The Bright Hour: A Memoir of Living and Dying by Nina Riggs
- The Tincture of Time: A Memoir of (Medical) Uncertainty by Elizabeth L. Silver: At the age of six weeks, Silver’s daughter suffered a massive brain bleed for no reason that doctors could ever determine. Thanks to the brain’s plasticity, especially in infants, the bleed was reabsorbed and Abby has developed normally, although the worry never goes away. Alongside the narrative of Abby’s baffling medical crisis, Silver tells of other health experiences in her family. An interesting exploration of the things we can’t control and how we get beyond notions of guilt and blame to accept that time may be the only healer.
Do you follow the Wellcome Book Prize? Have you read any books that might be eligible?
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.
Making Plans for March
How is it March already?! The last weekend of February flew by with a trip to Exeter to visit friends. Between Saturday and Sunday we spotted: a humpback whale off the Devon coast at Slapton (occasioning many cries of “Thar she blows!”), a giant pug painted on an underpass, a mighty fine cream tea, and far too many secondhand books at Book-Cycle.
For me the month of March holds an alarming number of deadlines for book reviews: 15, to be precise. Yipes! Luckily I’ve already managed to submit two of these reviews, and I plan to write a third this afternoon. Most of those are as part of my paid work, but I’ll also be participating in two blog tours for nonfiction books on adoption and foxes, respectively, and contributing a review of Here Comes the Sun by Nicole Dennis-Benn to Shiny New Books.
As to other planned blog posts for the month…
- Thanks to your comments I’ve started The Tenant of Wildfell Hall as my monthly classic (27 pages in and I’m loving it already).
- I’m doing some thematic reading for World Kidney Day on the 9th.
- I’m thinking of getting my first Haruki Murakami book, The Wind-Up Bird Chronicle, out from the library as my doorstopper of the month.
- I’ll be reviewing Narcissism for Beginners by Martine McDonagh (terrific) and The Family Gene by Joselin Linder (haven’t started yet).
- A couple more books may turn up from publishers if I’m lucky.
Some other themed reading challenges are underway but will probably roll over to future months.
Today I’m picking up three library holds: The Good People by Hannah Kent, The Best of Adam Sharp by Graeme Simsion and Days Without End by Sebastian Barry (this one’s for a BookBrowse review due in April). All are likely to be requested after me, so somehow I have to fit them in during the next three weeks. I do hope they’re quick reads!