January Releases, Part III: Taylor Harris, Cathy Rentzenbrink & Tanya Shadrick
Rounding off my three-part look at some of the month’s new releases with two memoirs plus a memoir-writer’s self-help guide today. (Can you tell I’m a memoir junkie?) Topics range from medical mysteries and covert racism to a reclaiming of life after a near-death experience, but these three nonfiction works by women are linked by the determination to overcome self-doubt.
This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown by Taylor Harris
One morning, Taylor Harris and her husband (an African American family based in Charlottesville, Virginia) found their 22-month-old son Christopher, nicknamed “Tophs,” awake but unresponsive in his crib. In the years that followed, she and his doctors looked for answers as to why his body couldn’t regulate his blood sugar levels, sometimes leading to seizures, and to why his speech and mental processing remained delayed. All their tests and theories have never amounted to a conclusive diagnosis. This was a book that repeatedly surprised me. I’d assumed it would be exclusively about the medical mystery of Tophs’s physical and intellectual disability. But Harris elegantly weaves in a lot of other themes, too: mental illness, her own physical concerns (a BRCA2 mutation), racism, faith, and advocating for her children’s health and education. (Full review at BookBrowse.)
Write It All Down: How to put your life on the page by Cathy Rentzenbrink
Cathy Rentzenbrink is a lovely human being, and I’ve always appreciated her enthusiastic support of books. I’ve read all of her work even though I’ve been disappointed with her last few releases. There are so many writing guides out there – including several on memoir-writing specifically – that the first question to ask about one is, does it offer anything new? For me, this one doesn’t. In fact, it’s more of a therapy session than a practical writing guide.
The undemanding prose slides right down, but 60 pages in (at the end of Part One, “Preparation”) I realized all we’d had thus far was enumerating and countering the hang-ups of unconfident, procrastinating would-be writers. The rest of the book does then get into the nitty-gritty of producing a first draft (“Excavation”) of a life story and editing it into a more polished form. Rentzenbrink peppers in little tricks to keep oneself at the desk, like setting a timer or micro-goals, writing a section in the form of a letter, and dredging up sensory details. Most of the mini chapters are just a couple of pages. Several end with a series of prompts. I’m notorious for skipping the application questions in self-help books, but I’d be interested to hear if other readers have actually gone through these exercises and found them helpful.
I’m so familiar with the author’s own story from her three autobiographical works that I was less than patient about encountering certain incidents again here – though I was intrigued to learn that she gave up alcohol in the recent past after realizing that she was a problem drinker. I’ve also read most of the material in her Further Reading list; all told, I didn’t feel this book offered me much, as a lay reader or a maybe-some-day memoirist. But it seems to have been enormously popular among critics and readers (its average Goodreads rating is 4.38), so clearly a lot of people have been finding Rentzenbrink’s down-to-earth approach reassuring.
With thanks to Emma Finnigan PR and Bluebird for the proof copy for review.
The Cure for Sleep: Memoir of a Late-Waking Life by Tanya Shadrick
From my Most Anticipated list. Shadrick hangs around the fringes of nature writing cliques on Twitter, so I expected this to have more of a nature/travel element. Instead, it bears a fairy tale ambience, of a little girl lost in the woods and craving freedom; of a sleepwalking woman deciding to live more deliberately. It opens with a near-death experience: Shadrick, new mother to a son conceived after infertility treatment, suffered a severe haemorrhage after the placenta tore an artery and was rushed to hospital for emergency surgery.
From this point she returns to the beginning of her life and proceeds chronologically, pausing at joyful or traumatic moments. Her childhood feels like the key to understanding everything else: her father left when she was a baby; her mother, all too aware of being of lower class, was driven to improve herself. Shadrick wanted her mother all to herself, at the same time as she felt trapped by her. She injured herself jumping off an outhouse roof in protest at her mother’s new boyfriend, who became her stepfather. At university she reacted against her upbringing in predictable ways, failing her first year and having an abortion. Even once happily married, she kept unconsciously searching for surrogate father (older male) figures.
After the postnatal operation, she felt a need to escape – by suicide if necessary – yet forced herself to stay, make connections in her town and be present for her children. But she remained a free spirit, swimming and writing a mile-long scroll as public performance art. Her work with hospice patients, recording their memories, qualified her to edit Lynne Roper’s wild swimming diaries into a Wainwright Prize-longlisted book.
Awakening versus sleep is the figurative framework for the memoir, with a feminist insistence on freedom and self-fulfilment at the same time as being a mother. This is an unusual book – at times overwritten and too deliberately moulded into tropes as a rebuttal to randomness, even though, looking back, I can’t decipher a coherent plot to the events – that reminded me most of Free Woman by Lara Feigel and I Am, I Am, I Am by Maggie O’Farrell.
With thanks to W&N for the free copy for review.
Does one of these books appeal to you?
Some Early Recommendations for 2020
I haven’t done much dipping into 2020 releases yet, but I do have two that I would highly recommend to pretty much anyone, plus some more that are also worth highlighting.
My top recommendations (so far) for 2020:
American Dirt by Jeanine Cummins
[Coming on January 21st from Tinder Press (UK) / Flatiron Books (USA)]
You’ve most likely already heard of this novel about the plight of migrants crossing the U.S. border in search of a better life. What’s interesting is that the main characters are not your typical border crossers: Lydia was a middle-class Acapulco bookshop owner whose journalist husband was murdered for his pieces exposing the local drug cartel. She and her eight-year-old son, Luca, know that the cartel is after them, too, and its informers are everywhere. They join Central American migrants in hopping onto La Bestia, a dangerous freight train network running the length of Mexico. Their fellow travelers’ histories reveal the traumatic situations migrants leave and the hazards they face along the way. Cummins alternates between the compelling perspectives of Lydia and Luca, and the suspense is unrelenting. It feels current and crucial. (My full review will be in Issue 491 of Stylist magazine, so if you are in London or another city that hands it out and can pick up a copy, keep an eye out!)
The Lost Family: How DNA Testing Is Upending Who We Are by Libby Copeland
[Coming on March 3rd from Abrams Press (USA)]
A terrific follow-up to one of my runners-up from last year, Inheritance by Dani Shapiro. I learned that “non-paternity events” such as Shapiro experienced are not as uncommon as you might think. Copeland spoke to scientists, DNA testing companies, and some 400 ordinary people who sent off saliva samples to get their DNA profile and, in many cases, received results they were never expecting. There are stories of secret second families, of people who didn’t find out they were adopted until midlife, and of babies switched at birth. We’ve come a long way since the days when people interested in family history had to trawl through reams of microfilm and wait months or years to learn anything new; nowadays a DNA test can turn up missing relatives within a matter of days. But there are a lot of troubling aspects to this new industry, including privacy concerns, notions of racial identity, and criminal databases. It’s a timely and thought-provoking book, written with all the verve and suspense of fiction.
Also of note (in release date order):
Half Broke: A Memoir by Ginger Gaffney: Horse trainer Gaffney has volunteered at the Delancey Street Foundation’s New Mexico ranch, an alternative prison for drug offenders, for six years. She chronicles how feral horses and humans can help each other heal. Great for fans of Cheryl Strayed. (February 4, W.W. Norton)
Survival Is a Style: Poems by Christian Wiman: Wiman examines Christian faith in the shadow of cancer. This is the third of his books that I’ve read; I’m consistently impressed by how he makes room for doubt, bitterness and irony, yet a flame of faith remains. Really interesting phrasing and vocabulary here. (February 4, Farrar, Straus and Giroux)
Pain Studies by Lisa Olstein: Another in a growing number of hard-hitting books about female pain. Specifically, Olstein has chronic migraines. In these essays she ranges from ancient philosophy to recent television in her references, and from lists of symptoms to poetic descriptions in her format. A little rambly, but stylish nonetheless. (March 4, Bellevue Literary Press)
My Wild Garden: Notes from a Writer’s Eden by Meir Shalev: The Israeli novelist tells of how he took a derelict garden in the Jezreel Valley and made it thrive. He blends botanical knowledge with Jewish folklore. I particularly enjoyed his good-natured feud against his local mole rats. Gentle and charming. (March 31, Shocken)
The Alekizou and His Terrible Library Plot! by Nancy Turgeon: The Alekizou can’t read! Jealous of the fun he sees children having at the library, he breaks in and steals all the vowels. Without them, books and speech don’t make sense. Luckily, the children know sign language and use it to create replacement letters. A fun picture book with rhymes reminiscent of Dr. Seuss, this also teaches children vowels and basic signing. (April 6, CrissCross AppleSauce)
With thanks to the publisher for the free PDF copy for review.
Why We Swim by Bonnie Tsui: A personal history with swimming, but also a wide-ranging study of humans’ relationship with the water – as a source of food, exercise, healing, competition and enjoyment. Tsui meets scientists, coaches, Olympians and record holders, and recounts some hard-to-believe survival tales. (April 14, Algonquin Books)
Will you look out for one or more of these?
Any other 2020 reads you can recommend?
Four Recent Review Books: Butler, Hunt, Paralkar and Vestre
Four February–April releases: A quiet novel about the clash of religion and reason; a birdwatching odyssey in London; a folktale-inspired story of the undead descending on an Indian medical clinic; and a layman’s introduction to fetal development – you can’t say I don’t read a wide variety of books! See if any of these tempt you.
Little Faith by Nickolas Butler
Butler follows in Kent Haruf’s footsteps with this quiet story of ordinary Midwesterners facing a series of small crises. Lyle Hovde works at a local Wisconsin orchard but is more interested in spending time with Isaac, his five-year-old grandson. Lyle has been an atheist since he and Peg lost a child in infancy, making it all the more ironic that their adopted daughter, Shiloh, has recently turned extremely religious. She attends a large non-denominational church that meets in an old movie theatre and is engaged to Pastor Steven*, whose hardline opinions are at odds with his hipster persona.
Steven and Shiloh believe Isaac has a healing gift – perhaps he can even help Lyle’s old pal, Hoot, who’s just been diagnosed with advanced cancer? The main story line reminded me most of Emily Fridlund’s History of Wolves (health and superstition collide) and Carolyn Parkhurst’s Harmony (the dangers of a charismatic leader). It’s all well and good to have faith in supernatural healing, but not if it means rejecting traditional medicine.
This is the epitome of a slow burner, though: things don’t really heat up until the final 35 pages, and there were a few chapters that could have been cut altogether. The female characters struck me as underdeveloped, but I did have a genuine warm feeling for Lyle. There are some memorable scenes, like Lyle’s heroic effort to save the orchard from an ice storm – a symbolic act that’s more about his desperation to save his grandson from toxic religion. But mostly this is a book to appreciate for the slow, predictable rhythms of a small-town life lived by the seasons.
[*So funny because that’s my brother-in-law’s name! I’ve also visited a Maryland church that meets in a former movie theatre. I was a part of somewhat extreme churches and youth groups in my growing-up years, but luckily nowhere that would have advocated foregoing traditional medicine in favor of faith healing. There were a few false notes here that told me Butler was writing about a world he wasn’t familiar with.]
A favorite passage:
“‘Silent Night’ in a darkened country chapel was, to Lyle, more powerful than any atomic bomb. He was incapable of singing it without feeling his eyes go misty, without feeling that his voice was but one link in a chain of voices connected over the generations and centuries, that line we sometimes call family. Or memory itself.”
With thanks to Faber & Faber for the free copy for review.
The Parakeeting of London: An Adventure in Gonzo Ornithology by Nick Hunt
Rose-ringed parakeets were first recorded in London in the 1890s, but only in the last couple of decades have they started to seem ubiquitous. I remember seeing them clustered in treetops and flying overhead in various Surrey, Kent and Berkshire suburbs we’ve lived in. They’re even more noticeable in London’s parks and cemeteries. “When did they become as established as beards and artisan coffee?” Nick Hunt wonders about his home in Hackney. He and photographer Tim Mitchell set out to canvass public opinion about London’s parakeets and look into conspiracy theories about how they escaped (Henry VIII and Jimi Hendrix are rumored to have released them; the set of The African Queen is another purported origin) and became so successful an invasive species.
A surprising cross section of the population is aware of the birds, and opinionated about them. Language of “immigrants” versus “natives” comes up frequently in the interviews, providing an uncomfortable parallel to xenophobic reactions towards human movement – “people had a tendency to conflate the avian with the human, turning the ornithological into the political. Invading, colonizing, taking over.” This is a pleasant little book any Londoner or British birdwatcher in general would appreciate.
With thanks to Paradise Road for the free copy for review.
Night Theatre by Vikram Paralkar
This short novel has an irresistible (cover and) setup: late one evening a surgeon in a rural Indian clinic gets a visit from a family of three: a teacher, his pregnant wife and their eight-year-old son. But there’s something different about this trio: they’re dead. They each bear hideous stab wounds from being set upon by bandits while walking home late from a fair. In the afterlife, an angel reluctantly granted them a second chance at life. If the surgeon can repair their gashes before daybreak, and as long as they stay within the village boundaries, their bodies will be revivified at dawn.
Paralkar draws on dreams, folktales and superstition, and the descriptions of medical procedures are vivid, as you would expect given the author’s work as a research physician at the University of Pennsylvania. The double meaning of the word “theatre” in the title encompasses the operating theatre and the dramatic spectacle that is taking place in this clinic. But somehow I never got invested in any of these characters and what might happen to them; the précis is more exciting than the narrative as a whole.
A favorite passage:
“Apart from the whispering of the dead in the corridor, the silence was almost deliberate – as if the crickets had been bribed and the dogs strangled. The village at the base of the hillock was perfectly still, its houses like polyps erupting from the soil. The rising moon had dusted them all with white talc. They appeared to have receded in the hours after sunset, abandoning the clinic to its unnatural deeds.”
With thanks to Serpent’s Tail for the free copy for review.
The Making of You: A Journey from Cell to Human by Katharina Vestre
A sprightly layman’s guide to genetics and embryology, written by Doctoral Research Fellow at the University of Oslo Department of Biosciences. Addressed in the second person, as the title suggests, the book traces your development from the sperm Leeuwenhoek studied under a microscope up to labor and delivery. Vestre looks at all the major organs and the five senses and discusses what can go wrong along with the normal quirks of the body.
I learned all kinds of bizarre facts. For instance, did you know that sperm have a sense of smell? And that until the 1960s pregnancy tests involved the death of a mouse or rabbit? Who knew that babies can remember flavors and sounds experienced in utero?
Vestre compares human development with other creatures’, including fruit flies (with whom we share half of our DNA), fish and alligators (which have various ways of determining gender), and other primates (why is it that they stay covered in fur and we don’t?). The charming style is aimed at the curious reader; I rarely felt that things were being dumbed down. Most chapters open with a fetal illustration by the author’s sister. I’m passing this on to a pregnant friend who will enjoy marveling at everything that’s happening inside her.
A representative passage:
“This may not sound terribly impressive; I promised you dramatic changes, and all that’s happened is that a round plate has become a triple-decker cell sandwich. But you’re already infinitely more interesting than the raspberry you were a short while ago. These cells are no longer confused, needy newcomers with no idea where they are or what they’re supposed to do. They have completed a rough division of labour. The cells on the top layer will form, among other things, skin, hair, nails, eye lenses, nerves and your brain. From the bottom layer you’ll get intestines, liver, trachea and lungs. And the middle layer will become your bones, muscles, heart and blood vessels.”
With thanks to Wellcome Collection/Profile Books for the free copy for review.
Would you be interested in reading one or more of these?
Final Wellcome Book Prize Shortlist Review: The Vaccine Race by Meredith Wadman
I had hoped this would be a comparable read to Rebecca Skloot’s The Immortal Life of Henrietta Lacks and Siddhartha Mukherjee’s The Emperor of All Maladies, which are two of my absolute favorite books and were also among the first to turn me on to medical-themed literature. Instead, I found myself skimming through the book’s dense scientific and historical information: like Mukherjee’s other book, The Gene, which made last year’s Wellcome shortlist, The Vaccine Race is overstuffed with a mixture of the familiar (for me, at least – genetics), the seemingly irrelevant (cell culture techniques and scientific nomenclature), and the truly interesting (questions of medical ethics).
The unlikely protagonist of this story is Leonard Hayflick, a single-minded and resourceful researcher who is still alive in his late eighties and assented to dozens of interviews and many more e-mails as Wadman put this book together. While in high school Hayflick made a chemistry lab in his basement, and in college he built his father a dental lab: that tells you how driven he was. After graduating from the University of Pennsylvania, he worked at the Wistar Institute on its campus. He chiefly investigated whether viruses cause cancer and whether a cell line will be immortal or subject to the normal rules of aging – the Hayflick limit, named after him, is the number of cell divisions possible before a cell line dies out.
Hayflick experimented on his third child’s placenta, but also on aborted fetuses from the university hospital. Replacement fetal cell lines sourced from the Karolinska Institute in Stockholm, Sweden were used to produce the polio, rubella and rabies vaccines. In particular, he relied on the WI-38 line he developed from fetal cells taken from the Swedish “Mrs. X,” who – like Henrietta Lacks’s family – was never compensated; she did not want to be interviewed for or mentioned by name in this book. In the 1970s, with Roe v. Wade in the pipeline, the controversy over using aborted fetal tissue in research heated up*, and Hayflick was somewhat disgraced in the course of a 1976 lawsuit about his right to profit from WI-38.
But that’s not the only dubious ethical situation associated with the development of the twentieth century’s major vaccines: Hayflick’s bosses and associates had also tested early vaccines on intellectually disabled child “volunteers,” while a celebrated cancer researcher had injected cells into dying hospital patients and healthy prisoners in the name of science. Wadman writes, “by the mid-1960s, ordinary people were becoming less willing to give scientists carte blanche to tinker with human beings on a ‘Trust me, I know what’s best for you’ basis.” The question is whether these morally suspect strategies were worth it, given the alternative: rubella in pregnancy causes severe birth defects including blindness, while polio can be crippling and untreated rabies can lead to a slow and painful death.
These ethical questions are certainly worth thinking about, though the abortion history in particular is probably of much more interest to American readers. Here in Europe, abortion is a non-issue, so I don’t expect anyone to get fired up about the history of fetal tissue research. Wadman is certainly a thorough researcher and capable storyteller who doesn’t talk down when explaining science. That said, she might have scaled back on the science a bit to ensure that her work holds broader appeal for lay readers of popular science and medical history.
*More recently, Debi Vinnedge’s Children of God for Life nonprofit has opposed stem cell research despite a Vatican ruling that vaccines developed from fetal tissue are acceptable to use as long as there is no alternative.
My rating:
See what the rest of the shadow panel has to say about this book:
Annabel’s blog tour review: “The thrillerish feel to big pharma’s politics, and Hayflick’s continual battles for recognition and against anyone who wanted to take his cells away from him made for fascinating reading and added the much-needed human aspect.”
Clare’s review: “The Vaccine Race is a very dense read and some of the lengthier descriptions of things like the finer points of the biotechnology industry went a bit over my head in places. … However, the ethical debates are fascinating and clearly presented.”
Laura’s review: “Wadman writes clearly and compellingly, and given how much material she’s handling, managing to structure the book sensibly is a feat in itself. But I felt that The Vaccine Race was often not one thing or the other.”
Paul’s review: “It is a very important story that Wadman is telling … especially given that we may well be on the dawn of a new era in medicine with the rise of immunity against antibiotics.”
(Also, be sure to stop by Paul’s site today for an exclusive extract from The Vaccine Race as part of the ongoing blog tour.)
My gut feeling: This is the most science-y of the six books on the shortlist. For me that actually works against the broadness and public-facing nature of the prize, as expressed in its brief: “At some point, medicine touches all our lives. Books that find stories in those brushes with medicine are ones that add new meaning to what it means to be human. The subjects these books grapple with might include birth and beginnings, illness and loss, pain, memory, and identity. In keeping with its vision and goals, the Wellcome Book Prize aims to excite public interest and encourage debate around these topics.”
Shortlist strategy:
- Tomorrow I’ll quickly recap my thoughts about the two shortlisted books I read before the shortlist announcement, With the End in Mind and The Butchering Art.
- On Saturday morning I’ll announce our shadow panel winner. That day Clare and I are attending an event featuring five of the shortlisted authors in conversation at the Wellcome Collection in London. I’ll report back about it on Sunday.
- Monday is the awards ceremony, which I’ll be attending for the second year in a row. Expect my write-up of the experience on Tuesday. (In between you get a break from Wellcome Prize stuff with Library Checkout plus some recommendations for May!)
Wellcome Prize Shortlist, Pt. 3: The Gene, Siddhartha Mukherjee
Siddhartha Mukherjee is an assistant professor of medicine at Columbia University, where his lab specializes in stem cells and blood cancers. His book The Emperor of All Maladies, which won a Pulitzer Prize in 2011, is among my most memorable reads of the past decade. Along with Rebecca Skloot’s The Immortal Life of Henrietta Lacks, it was one of the first books to turn me on to health-themed reading.
So it was a disappointment to find that I could never really engage with his second full-length work, The Gene: An Intimate History. There’s no denying this book’s impressive scope: it’s a comprehensive survey of the past 150 years of genetics research, but it also stretches back to antiquity to see the different ways people have imagined that heredity works. It’s a no-holds-barred science and social history text, both chronological and thematic in approach, and it also surprises with its breadth of literary reference (as in the epigraphs from 1Q84 and The Importance of Being Earnest). However, my favorite snippets were those that constitute a mini family memoir of the schizophrenia that runs through the author’s India-based family.
Part of the problem was that a lot of the early material concerning Gregor Mendel and Charles Darwin is very familiar to me. High school genetics material has stayed fresh in my mind even though so many other subjects have faded, and I’ve done a lot of reading on Darwin for my Victorian Literature MA and on my own time. Darwin’s cousin, Francis Galton, then provides a segue into the dark side of genetics: eugenics. A lot of space is given to Nazism, but Mukherjee also hits closer to home with the case of Carrie Buck, a “feeble-minded” woman whose enforced sterilization the U.S. Supreme Court affirmed in 1927.
Other important figures in the history of genetics include Dutch botanist Hugo de Vries, Hermann Muller, Oswald Avery, Linus Pauling, and the famous English team that discovered the structure of DNA, Watson, Crick & Franklin. Parts Three and Four, which chronicle the advances in genetics that fell between the 1970s and early 2000s, struck me as particularly dull, whereas Part Five held my interest much more strongly in that it brings things up to date with the developments of the last 15 years, including epigenetics, genetic testing for breast cancer and schizophrenia, stem cell therapy and the search for a “gay gene.”
The book did leave me with a strong sense that our knowledge of genes – the least divisible unit of information about life – affects our understanding of the human identity and future:
In the early decades of the twenty-first century, we are learning to speak yet another language of cause and effect, and constructing a new epidemiology of self: we are beginning to describe illness, identity, affinity, temperament, preferences—and, ultimately, fate and choice—in terms of genes and genomes. This is not to make the absurd claim that genes are the only lenses through which fundamental aspects of our nature and destiny can be viewed. But it is to propose and to give serious consideration to one of the most provocative ideas about our history and future: that the influence of genes on our lives and beings is richer, deeper, and more unnerving than we had imagined. This idea becomes even more provocative and destabilizing as we learn to interpret, alter, and manipulate the genome intentionally, thereby acquiring the ability to alter future fates and choices.
However, at nearly 500 very dense, small-print pages, this book will, I fear, struggle to find a broad readership. Is it for science majors and graduate students? They’re likely to have their own university-approved textbooks. Is it an introduction for the general layman? Without a keen interest in science and a determination to learn the last word about genetics, readers are unlikely to persist with such a tome. I have a greater than average interest in genetic diseases, yet couldn’t manage more than a desultory skim. Unlike The Emperor of All Maladies, I can’t see this becoming a modern classic of popular science writing. For me it’s this year’s Citizen Kane: an achievement I can objectively admire but not personally warm to.
My rating:
My gut feeling: This was also shortlisted for the 2016 Royal Society Insight Investment Science Book Prize. I think it was better suited to that prize’s aims than to the Wellcome Prize’s. Keeping in mind that “the Wellcome Book Prize aims to excite public interest and encourage debate around these topics [birth and beginnings, illness and loss, pain, memory, and identity],” I unfortunately can’t see Mukherjee having the necessary universal appeal.
More reviews:
Paul’s at Nudge; he’s also on the Wellcome Book Prize blog tour for this title on Wednesday.
Shortlist strategy: I’m reviewing Ed Yong’s I Contain Multitudes for the Wellcome Book Prize blog tour on Friday. The last hurdle is David France’s How to Survive a Plague, another doorstopper I’m having to skim to get through. I plan to review it here on Saturday and on Sunday we will announce our shadow panel winner.
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: