Tag: bereavement memoirs

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:

Grief in Literature: Michel Faber and Cathy Rentzenbrink

On Tuesday night I had the chance to see Michel Faber in conversation with Cathy Rentzenbrink at Foyles bookstore in London. The topic was grief in literature, and specifically Faber’s book of poems in honor of his late wife, Undying: A Love Story (which I reviewed here in July). Faber had always written occasional poems, he said, “sort of kind of clever” stuff that he would have taken little note of if he encountered it from another author; the only really good ones, he thought, were about illness, based on his time as a nurse. So when there came this huge uprising of poems about Eva’s last illness, he felt they were a more appropriate way of commemorating her life than a novelistic narrative.

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A six-floor bookshop: heaven for book lovers.

Rentzenbrink mentioned two things that particularly struck her: how Eva emerges in the fullness of her personality in the course of these poems, and the fact that the book is not angry. Faber explained that Eva herself was not angry. She did not think of multiple myeloma as her enemy and had no illusions about ‘beating’ cancer; instead, she just tried to achieve the best quality of life and the longest lifespan possible. In fact, she found cancer interesting, Faber recalled: she researched it as much as she could and followed its course with a certain curiosity. He contrasted her experience with that of an acquaintance in the Scottish Highlands who had the same disease and wanted to know nothing about it, leaving it all in the hands of her doctors. Faber believes this ignorance shortened their friend’s life unnecessarily.

Making sure that Eva came through as a real person in the poems was a struggle, Faber confessed. To start with his editors at Canongate, many of whom knew Eva, were frustrated that Undying was mercilessly medical, describing the process and aftermath of cancer treatment. A few poems, then, he wrote as a direct response to that criticism, almost as if ‘on commission’, he said, to infuse the book with more of Eva’s personality.

Only two of the poems were written while Eva was still alive, Faber noted. One was “Nipples,” written at her bedside just 10 days before her death. Eva had dealt with the pain and indignity of her illness admirably, but plasmacytomas – big purple welts all over her skin – truly broke her spirit, he revealed. His poem is a strangely erotic take on these blemishes: “Excited peaks of plasma. … Your flesh is riotous with the pleasure / of predatory cells.”

Cathy Rentzenbrink and Michel Faber
Cathy Rentzenbrink and Michel Faber

There’s irony there, and a certain dark humor in many of the rest. “There are so many absurdities when a body is breaking down spectacularly,” Faber said. And yet the last two years of Eva’s life were “incredibly intimate and tender,” as a fiercely independent woman ended up very frail and completely dependent on him as her carer. Likewise, Faber had to shift from creativity to practicality to cope with household tasks plus caregiving.

Cathy Rentzenbrink was the perfect person to interview Faber. She is the author of a bereavement memoir, The Last Act of Love, about her brother’s death after eight years in a vegetative state. Moreover, her mother survived a bout with cancer at the same age as Eva; she was heavily involved with that process through accompanying her to chemotherapy appointments. I was a bit disappointed that Rentzenbrink didn’t get to speak more about her own grief and the experience of crafting a narrative out of it. Faber said he too had envisioned more of a dialogue, but that Rentzenbrink thought it would be inappropriate for her to talk about herself and generously kept the focus on his work instead.

I also would have appreciated more context about grief literature in general, and poetry in particular. Faber did mention that there are many kinds of grief poetry. For instance, Thomas Hardy was still writing poems about his first wife decades after her death. Faber consciously avoided writing elegant, well-formed poetry like some that he’s read; instead he wanted his poems to be raw, direct, even shocking. Contrast that with the rainbows and heavenly visions of much of what’s out there. This came home to me a few weeks ago at my husband’s uncle’s funeral. Three poems were recited in the course of the ceremony, all of them heavily clichéd and unfailingly rhymed. This meant that the speakers ended up using singsong voices. In Faber’s poems, though, end rhymes are rare. I noticed them more, along with the sibilance and internal rhymes, through the emphasis he lent when reading aloud.

img_0503Rentzenbrink insisted there is still life to be lived for the grieving. As if to reinforce her point, Faber openly admitted to his relationship with a fellow writer who also lost a longtime partner, Louisa Young, whom he met the year after Eva’s death. He’s aware that this poses a marketing problem: he’s no longer the disconsolate soul in rumpled clothing, barely surviving without his spouse. (Indeed, he looked well put together and hip in his blue leather jacket and bright orange shoes, and his blond mop makes him appear much younger than he is.) Thinking also of a widower friend, Rentzenbrink said that her feeling was “he looked after her for so many years; he can have a little fun now!”

As to Faber’s professional future, he reiterated that he does not plan to write any more novels for adults. All of his fiction is about characters desperate to transcend, he said, and now it’s time for him to do that in his own life. He’s pondered a couple of nonfiction projects about aesthetics and music, but for now his next goal is a YA adventure novel. Whenever plaintive readers beg him for future novels, he cheekily asks whether they’ve read his whole back catalogue – including two collections of short stories, always a hard sell for novel readers. I have six more of Faber’s books to get to myself, so that’s plenty to fuel me in the years ahead. I came away from this event with a greater appreciation for the poems in Undying and a deep respect for a man aware of the seasons of his life, writing and caregiving among them.