Tag Archives: genetic disease

The Still Point (of the Turning World & Sanctuary)

Amy Sackville’s debut novel, The Still Point, had been on my radar ever since I read her follow-up, Orkney. I finally put it on my wish list and got a copy for Christmas. In the meantime, I’d also acquired a copy of Emily Rapp’s memoir The Still Point of the Turning World as part of a big secondhand book haul at the start of the first lockdown.

Both books take their title from the eminently quotable T.S. Eliot*, specifically his poem “Burnt Norton.” I couldn’t resist the urge to review them together (along with Rapp’s recent sequel) – although, unlike with my dual review of two books titled Ex Libris, I won’t pit them against each other because they’re such different books.

That said, they do share a dreamlike quality and the search for people and places that might serve as refuges in a shattered life. All:

 

The Still Point by Amy Sackville (2010)

no

I am not heroic, I prefer

not to conquer

polar regions, my

gardens in July

serve for me.

~from “emperor’s walk” by G.F. Dutton

A sweltering summer versus an encasing of ice; an ordinary day versus decades of futile waiting. Sackville explores these contradictions only to deflate them, collapsing time such that a polar explorer’s wife and her great-great-niece can inhabit the same literal and emotional space despite being separated by more than a century. When Edward Mackley went off on his expedition in the early 1900s, he left behind Emily, his devoted, hopeful new bride. She was to live out the rest of her days in the Mackley family home with her brother-in-law and his growing family; Edward never returned. Now Julia and her husband Simon reside in that same Victorian house, serving as custodians of memories and artifacts from her ancestors’ travels and naturalist observations. From one early morning until the next, we peer into this average marriage with its sadness and silences. On this day, Julia discovers a family secret, and late on reveals another of her own, that subtly change how we see her and Emily.

This is a highly fluid and sensual novel, but somehow so sinuous as to be hard to grasp. I took in its interlocking story lines just a few pages at a time; floating on the gorgeous prose, basking in the alternating heat and chill. Sackville’s greatest stylistic debt must be to Virginia Woolf, but I was also reminded of Lucy Wood’s Weathering and Evie Wyld’s The Bass Rock – two similarly beautiful books in which a house and its ghosts are major characters – and of how some of Sarah Moss’s work braids the past into the everyday. I suspect this won’t be for every reader, but if you can find the right moment and mood, you might just be entranced.

 

One of Sackville’s research sources was Arctic Dreams by Barry Lopez, a work I recently skimmed for a winter post. Two passages that stood out to me apply equally well to Rapp’s books:

“The literature of nineteenth-century arctic exploration is full of coincidence and drama—last-minute rescues, a desperate rifle shot to secure food for starving men, secret letters written to painfully missed loved ones. There are moments of surreal stillness, as in Parry’s journal when he writes of the sound of the human voice in the land. And of tender ministration and quiet forbearance in the face of inevitable death.

“The continuous work of the imagination, I thought, to bring what is actual together with what is dreamed is an expression of human evolution. The conscious desire is to achieve a state, even momentarily, that like light is unbounded, nurturing, suffused with wisdom and creation, a state in which one has absorbed that very darkness which before was the perpetual sign of defeat.

 

The Still Point of the Turning World by Emily Rapp (2013)

In 2011 Rapp’s baby son Ronan was diagnosed with Tay-Sachs disease, a degenerative nerve condition that causes blindness, deafness, seizures, paralysis and, ultimately, death. Tay-Sachs is usually seen in Ashkenazi Jews, so it came as a surprise: Rapp and her husband Rick both had to be carriers, whereas only he was Jewish; they never thought to get tested.

This memoir was written while Ronan was still alive, and the rapid, in-the-thick-of-it composition is evident: it rides the same rollercoaster of feelings over and over again, even repeating some of the same facts. I put this down to the brain fog of anticipatory grief. “The constant push-pull: here but not for long. What will come next?” Rapp quotes extensively from other writers who have grappled with bereavement, especially poets, as if building an inner library to bolster herself against what is to come (“it wasn’t consolation I needed or desired, but the tools to walk through this fire without being consumed by it”).

Rapp puts her son’s life into context through memories of growing up disabled (she had a rare condition that necessitated the amputation of a leg as a child, and wore a prosthesis) in the conservative Midwest, contrasting the Christian theology she grew up in and studied at college with the Eastern and New Age spiritualities that prevail in Santa Fe, where she and Rick then lived with Ronan. She ponders the worth of a life that will be marked by no traditional achievements.

In The Art of Memoir, Mary Karr advises seven years between the events and the writing about them, but Rapp explains her strategy of instant reaction thus:

grief, this extreme experience, forces a writer to draw on her deepest resources, and such a dive demands so much work that what comes up must be heaved onto the page almost immediately; otherwise it might eat the thinker alive, drown them … Or at least that’s how I felt. You can eat fire for only so long, and then you’ve got to spit it out in another form or risk the burn.

She felt that “rendering loss was a way of honoring life,” which even with this death sentence hanging over the family had its times of pure joy: “there existed inside this helpless, frantic sadness exquisite moments of pristine happiness and an almost-perfect peace.” The title perfectly captures the necessity of finding this calmness of soul amidst a tumultuous life.

 

Sanctuary by Emily Rapp Black (2021)

Things got worse before they got better. As is common for couples who lose a child, Rapp and her first husband separated, soon after she completed her book. In the six months leading up to Ronan’s death in February 2013, his condition deteriorated rapidly and he needed hospice caretakers. Rapp came close to suicide. But in those desperate months, she also threw herself into a new relationship with Kent, a 20-years-older man who was there for her as Ronan was dying and would become her second husband and the father of her daughter, Charlotte (“Charlie”). The acrimonious split from Rick and the astonishment of a new life with Kent – starting in the literal sanctuary of his converted New Mexico chapel, and then moving to California – were two sides of a coin. So were missing Ronan and loving Charlie.

Sanctuary is a similarly allusive text, with each chapter prefaced by a poem, and it is again full of flashbacks, threading all the seemingly disparate parts of a life into a chaotic tapestry. Rapp Black questions the sorts of words that she and her experience got branded with: “brave,” “tragic,” “resilient” – “I unwittingly became the poster child,” she wryly reports. In the same way that she’d been praised for “overcoming disability,” she saw that she was now being trotted out as an example of coping with unimaginable loss. But she didn’t want to be someone’s model; she just wanted the chance to live her life and be happy again. Her wisdom isn’t what makes it onto inspirational stickers, but it’s genuine and hard-won:

“It has little or nothing to do with bravery. Nobody is charging into warfare here. No gold stars are given because none are earned. I am no warrior of love or anything else.”

“Time doesn’t heal anything; it just changes things—reshapes and reorients them.”

“resilience is not always a function of the desire to survive. Either you survive, or you don’t. There’s no fault, no moral judgment, assigned to either outcome.”

“Isn’t it true that what doesn’t kill you makes you stronger? No. What doesn’t kill you changes you, and those who chose to love you. That is what it means to bear witness, a unique and salvific form of resilience.”

Although I was glad to have read both, to have experienced both the in-the-moment and the after-the-fact, I think Sanctuary could easily function as a standalone memoir because of how much of Ronan’s illness it relives. For being that bit more measured and wrought, I think it’s the better book by a hair’s breadth. It tames the fire and just radiates the light and warmth.

I read an advanced e-copy via NetGalley. Thanks to John Murray Press for the approval.

 

*Other Eliot-sourced titles I have reviewed: Teach Us to Sit Still by Tim Parks and The Stillness The Dancing by Wendy Perriam.

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.