Tag Archives: multiple sclerosis

The Inevitable: Dispatches on the Right to Die by Katie Engelhart

Why, she wanted to know, was I so interested in the subject?

“Why isn’t everyone?” I asked.

The fact that I read a lot more books about death than the average person is something I attribute not to some morbid curiosity, but to pragmatism. As the title of Canadian reporter and documentary filmmaker Katie Engelhart’s book makes clear, this is the one subject none of us can avoid indefinitely, so why not learn about and understand it as much as possible? The Inevitable focuses on the controversial matter of assisted dying, also known as assisted suicide, euthanasia, or physician-assisted death. It’s a topic that’s already come up in my reading a couple of times this year: in the Dutch context of That One Patient by Ellen de Visser, and as a key part of the narrative in Darke Matter by Rick Gekoski.

Engelhart spends time with doctors and patients who are caught up in the assisted dying argument, chiefly in Western Europe and the United States. Ten states plus Washington, D.C. have assisted dying laws, sparked by Oregon’s Death with Dignity Act in 1994. In California, the author follows Dr. Lonny Shavelson for a month, observing all the meticulous regulations surrounded a physician-assisted death: patients with a terminal diagnosis and less than six months to live have to complete multiple forms, give many signatures, deliver oral testimony, and be able to drink the fatal concoction by themselves (whereas in other countries doctors can administer lethal injections). And if, when the time comes, a patient is too far gone to give spoken consent, the procedure is cancelled.

Other chapters consider specific cases that are not generally covered by current legislation but can drive people to seek assisted suicide: the ravages of old age, chronic degenerative illnesses, dementia, and severe mental illness. Each of these is given its own long chapter, like an extended magazine profile.

  • Meet Avril Henry, a former Exeter University professor in her eighties, now living alone with a failing body but no specific diagnosis that would qualify her for AD. Pain has long since outweighed pleasure in her life, so she illegally imports Nembutal from a veterinary supplier in Mexico and makes a careful plan for what will happen with her body, home, and possessions after she takes the drug in the bathtub.
  • Meet Maia Calloway, a 39-year-old former filmmaker confined to a wheelchair by multiple sclerosis. Her medicines cost $65,000 a year, not all covered by Medicare, and she can no longer rely on the patience of her boyfriend, who acts as her carer. She decides to raise the money to travel from Taos to a Swiss assisted dying clinic.
  • Meet Debra, a 65-year-old widow so rapidly declining with dementia that she knows she has to make her arrangements at once. She contacts the Final Exit Network, which gives advice and equipment (e.g. a nitrogen tank) that can make a death look unexplained or like a standard suicide.
  • Meet Adam, a 27-year-old in daily distress from OCD, anxiety, and depersonalization disorder. Though he’s lobbied for the inclusion of mental illness, he doesn’t qualify for AD under Canada’s laws. In 2017 he starts a Facebook livestream from a hotel room, intending to take poison off-screen. He loses his nerve this time, but is determined to try again.

These stories are so wrenching, but so compassionately told. Engelhart explores the nuances of each situation, crafting expert portraits of suffering people and the medical professionals who seek to help them, and adding much in the way of valuable context. Hers is a voice of reason and empathy. She mostly stays in the background, as befits a journalist, but occasionally emotional responses or skepticism come through – Exit International’s Philip Nitschke, vilified as a “Dr. Death” like Jack Kevorkian, is too much of a maverick for her.

And while her sympathy for the AD cause is evident, she also presents opposing arguments: from hospice doctors, from those afraid that the disabled will be pushed into assisted suicide to free up resources, from the family members of her subjects, and from those who have witnessed abuses of the system. There are those who frame this as a question of rights, and others who recognize a rare privilege; some who scorn the notion of escape, and others who speak of dignity and the kindness one would show a dying pet. The book is a vital contribution to an ongoing debate, with human stories at its heart.


With thanks to Atlantic Books for the free copy for review. The Inevitable was published in the UK on March 11th and is available from St. Martin’s Press in the USA.

Introducing the Barbellion Prize & A Review of Sanatorium by Abi Palmer

New this year, the Barbellion Prize will be awarded annually “to an author whose work has best represented the experience of chronic illness and/or disability.” It’s named after W.N.P. Barbellion (the pen name of Bruce Frederick Cummings), the English author of The Journal of a Disappointed Man, which he started writing at 13. A self-taught naturalist, he specialized in lice when he worked for the British Museum’s department of natural history in London. He was rejected for war service in 1915 after a doctor found him to have multiple sclerosis. At that time, the diagnosis was like a death sentence; indeed, Cummings died at age 30 in 1919, though by then he had managed to produce two volumes of memoirs as well as a daughter.

Here’s some more information on the prize criteria from the website: “Eligibility for the prize is predicated on the author’s presentation of life with a long-term chronic illness or disability, whether that be in the form of blindness, MS, cystic fibrosis, dwarfism, or another comparable condition that may substantially define one’s life. Authors – such as those in a carer’s capacity – who themselves are not ill may be considered for the prize if their work is truly exceptional as an articulation of life with illness, but authors who themselves deal personally with illness or disability will take priority in any selection for the prize.”

Especially in the absence of the Wellcome Book Prize, which has been on hiatus since the announcement of the 2019 winner, I’m delighted that there is a new prize with a health slant, particularly one that will lead to greater visibility for disabled writers and their stories. From a longlist of eight, in January the Barbellion Prize judges chose a shortlist of four titles: three memoirs and a work of autofiction. The publishers kindly agreed to send me the shortlist for review. Two have arrived so far (there have been postal delays in the UK, as in many places).

I have already read one of the nominees and will do my best to review the rest before the £1000 prize is awarded on the 12th. The others are:

  • Golem Girl by Riva Lehrer – An illustrated memoir by a visual artist born with spina bifida.
  • The Fragments of My Father by Sam Mills – A memoir of being a carer for her father, who has paranoid schizophrenia; also includes musings on Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives. I’m currently reading this one.
  • Kika & Me by Amit Patel – Patel was a trauma doctor and lost his sight within 36 hours due to a rare condition. He was paired with his guide dog, Kika, in 2015.

 

 

Sanatorium by Abi Palmer (2020)

Water is a source of comfort and delight for Abi, the narrator of Sanatorium (whose experiences may or may not be those of the author; always tricky to tell with autofiction). Floating is like dreaming for her – an intermediate state between the solid world where she’s in pain and the prospect of vanishing into the air. In 2017 she spends a few weeks at a sanatorium in Budapest for water therapy; when she returns to London she buys a big inflatable plastic bathtub to keep up the exercises as she tries to wean herself off of opiates.

Abi feels fragile due to a whole host of body issues, some in her past but most continuing into the present: an autoimmune connective tissue disorder, psoriatic arthritis, Crohn’s disease, and sexual assaults. Her knee is most immediately problematic, leading her to use a mobility scooter. As her health waxes and wanes, other people – unable to appreciate any internal or incremental changes – judge her by whether or not she is able to walk well.

The book is in snippets, often of just a paragraph or even one sentence, and cycles through its several strands: Abi’s time in Budapest and how she captures it in an audio diary; ongoing therapy at her London flat, custom-designed for disabled tenants (except “I was the only cripple who could afford it”); the haunted house she grew up in in Surrey; and notes on plus prayers to St. Teresa of Ávila, accompanied by diagrams of a female figure in yoga poses.

Locations are given in small letters in the top corner of the page, apart from for the more dreamlike segments that can’t be pinned down to any one place. For instance, I was reminded of a George Saunders story by the surreal interlude in which Abi imagines Van Gogh’s Starry Night reproduced in the hair on a detached pair of legs mounted on a wall as a work of art.

The different formats and short chunks of prose generally keep the voice from becoming monotonous, though I did wonder if occasional use of the third person (and some more second person) could have been effective, too. Far from a straightforward memoir, the book incorporates passages that are closer to fantasy and poetry, and the visual elements and fertile imagery attest to Palmer’s background as a mixed-media artist.

Sanatorium is a fascinating work – matter-of-fact, playful and sensual – that vividly conveys the reality of life with a chronic illness. It was already on my wish list, but I’m so glad that this shortlisting gave me a chance to read it. Though I haven’t read the other nominees yet, the passages below are proof that this would be a deserving Barbellion Prize winner.

You go through life as a chronically ill person with so many different people who have so many different opinions about how your treatment should be. They’re not always useful or right. You have to build your own narrative and your own sense of what feels appropriate. You have to learn to trust your body to tell you what’s working. But that’s hard too, when your body keeps changing the rules.

I am one of the more privileged ones and still I’m screaming. God, it would be so nice just to dissolve into nothing and wash up onto a lonely beach.

I wonder if what I’ve learned about chronic illness, more than anything, is that it’s a constant cycle. You fall apart, then you try your best to rebuild again. I wonder what would happen if I stopped trying.

Readalikes I have also reviewed:


With thanks to Penned in the Margins for the free copy for review.

The 2019 Wellcome Book Prize: Shadow Panel and Wish List

On Tuesday the longlist for the 2019 Wellcome Book Prize will be announced. For the third year in a row I’m running a shadow panel, and it’s composed of the same four wonderful book bloggers who joined me last year: Paul Cheney of Halfman, Halfbook, Annabel Gaskell of Annabookbel, Clare Rowland of A Little Blog of Books, and Dr. Laura Tisdall.

This year we’re going to do things slightly differently: we plan to split up the longlist, taking two to three titles each, so that between us we will have read them all and can announce our own preferred shortlist before the official shortlist is announced in March. At that point we’ll catch up by (re)reading the six shortlisted books, each reviewing the ones we haven’t already. Essentially, I’m adding an extra stage of shadow panel judging, simply because I can. I hope it will be fun – and also less onerous, in that we should get a leg-up on the shortlist and not have to read all six books in March‒April, which has proved to be a challenge in the past.

My Wellcome Prize hopefuls are all the fiction or nonfiction titles I’ve read on a medical theme that were published in the UK in calendar year 2018. I have put asterisks beside the 12 books in this post that I predict for the longlist. (The combination of wishful thinking and likelihood means that these are not exclusively my personal favorites.)

 

Below is a list of the books I’ve already featured on the blog in some way, with links to my coverage and a few-word summary of their relevance.

 

Nonfiction

Gross Anatomy by Mara Altman: Female body woes

*Beneath the Skin: Great Writers on the Body: Essays on organs

*All that Remains by Sue Black: Forensic anthropology

Everything Happens for a Reason by Kate Bowler: Living with advanced cancer

Heal Me by Julia Buckley: Tackling chronic pain

*The Unmapped Mind by Christian Donlan: Adjusting to life with MS

From Here to Eternity by Caitlin Doughty: Funerary rites around the world

This Really Isn’t About You by Jean Hannah Edelstein: A genetic disease in the family

Natural Causes by Barbara Ehrenreich: Questioning the wellness culture

On Smaller Dogs and Larger Life Questions by Kate Figes: Pondering breast cancer

Shapeshifters by Gavin Francis: Instances of bodily change

The Reading Cure by Laura Freeman: Healing from an eating disorder

Nine Pints by Rose George: The story of blood

Waiting for the Last Bus by Richard Holloway: Ageing and death

*Heart: A History by Sandeep Jauhar: Heart disease and treatments

Sick by Porochista Khakpour: Chronic Lyme disease

Human Errors by Nathan Lents: Flawed bodies; evolutionary adaptations

Skybound by Rebecca Loncraine: Breast cancer; flying lessons

Amateur by Thomas Page McBee: Memoir of F2M transformation

*Face to Face by Jim McCaul: Tales of facial surgery

*Somebody I Used to Know by Wendy Mitchell: A firsthand account of early Alzheimer’s

*That Was When People Started to Worry by Nancy Tucker: Mental illness from the inside

*The Language of Kindness by Christie Watson: Nursing as a vocation

 

Fiction

Little by Edward Carey: Anatomical models in wax (thanks to Clare for the reminder!)

Orchid & the Wasp by Caoilinn Hughes: Non-epileptic seizures

*The Winter Soldier by Daniel Mason: Neurology, surgery during WWI

The Way of All Flesh by Ambrose Parry: Medicine in 1840s Edinburgh

 

 

Other eligible books that I have read but not happened to mention on the blog:

 

In Shock by Rana Awdish: The doctor became the patient when Awdish, seven months pregnant, was rushed into emergency surgery with excruciating pain due to severe hemorrhaging into the space around her liver, later explained by a ruptured tumor. Having experienced brusque, cursory treatment, even from colleagues at her Detroit-area hospital, she was convinced that doctors needed to do better. This memoir is a gripping story of her own medical journey and a fervent plea for compassion from medical professionals. 

 

Doctor by Andrew Bomback: Part of the Bloomsbury Object Lessons series, this is a wide-ranging look at what it’s like to be a doctor. Bomback is a kidney specialist; his wife is also a doctor, and his father, fast approaching retirement, is the kind of old-fashioned, reassuring pediatrician who knows everything. Even the author’s young daughter likes playing with a stethoscope and deciding what’s wrong with her dolls. In a sense, then, Bomback uses fragments of family memoir to compare the past, present and likely future of medicine. 

 

A Moment of Grace by Patrick Dillon [skimmed]: A touching short memoir of the last year of his wife Nicola Thorold’s life, in which she battled acute myeloid leukemia. Dillon doesn’t shy away from the pain and difficulties, but is also able to summon up some gratitude. 

 

Get Well Soon: Adventures in Alternative Healthcare by Nick Duerden: British journalist Nick Duerden had severe post-viral fatigue after a run-in with possible avian flu in 2009 and was falsely diagnosed with ME / CFS. He spent a year wholeheartedly investigating alternative therapies, including yoga, massage, mindfulness and meditation, visualization, talk therapy and more. He never comes across as bitter or sorry for himself. Instead, he considered fatigue a fact of his new life and asked what he could do about it. So this ends up being quite a pleasant amble through the options, some of them more bizarre than others. 

 

*Sight by Jessie Greengrass [skimmed]: I wanted to enjoy this, but ended up frustrated. As a set of themes (losing a parent, choosing motherhood, the ways in which medical science has learned to look into human bodies and minds), it’s appealing; as a novel, it’s off-putting. Had this been presented as a set of autobiographical essays, perhaps I would have loved it. But instead it’s in the coy autofiction mold where you know the author has pulled some observations straight from life, gussied up others, and then, in this case, thrown in a bunch of irrelevant medical material dredged up during research at the Wellcome Library. 

 

*Brainstorm: Detective Stories From the World of Neurology by Suzanne O’Sullivan: Epilepsy affects 600,000 people in the UK and 50 million worldwide, so it’s an important condition to know about. It is fascinating to see the range of behaviors seizures can be associated with. The guesswork is in determining precisely what is going wrong in the brain, and where, as well as how medicines or surgery could address the fault. “There are still far more unknowns than knowns where the brain is concerned,” O’Sullivan writes; “The brain has a mind of its own,” she wryly adds later on. (O’Sullivan won the Prize in 2016 for It’s All in Your Head.) 

 

 

I’m also currently reading and enjoying two witty medical books, The Mystery of the Exploding Teeth and Other Curiosities from the History of Medicine by Thomas Morris, and Chicken Unga Fever by Phil Whitaker, his collected New Statesman columns on being a GP.

 


Four additional books I have not read but think might have a chance of making the longlist:

Primate Change: How the World We Made Is Remaking Us by Vybarr Cregan-Reid

The Beautiful Cure: Harnessing Your Body’s Natural Defences by Daniel M. Davis

Because I Come from a Crazy Family: The Making of a Psychiatrist by Edward M. Hallowell

*She Has Her Mother’s Laugh: The Powers, Perversions, and Potential of Heredity by Carl Zimmer

 


Look out for the announcement of the longlist on Tuesday afternoon! I’ll report back, perhaps on Wednesday, with some reactions and the shadow panel’s reviewing strategy.

 

Have you read, or are you interested in, any of these books?

Can you think of other 2018 releases that might be eligible for the Wellcome Book Prize?

Best Nonfiction Books of 2018

Below I’ve chosen my 12 favorite nonfiction books published in 2018. You’ll be unsurprised to learn that half of them have a medical theme. Many have already featured on my blog in some way over the course of the year. To keep things simple, as I’ve done in previous years, I’m limiting myself to two sentences per title: a potted summary plus why you should read it. Let the countdown begin!

 

12. The Line Becomes a River by Francisco Cantú: Francisco Cantú was a U.S. Border Patrol agent for four years in Arizona and Texas. Impressionistic rather than journalistic, his book is a loosely thematic scrapbook that, in giving faces to an abstract struggle, argues passionately that people should not be divided by walls but united in common humanity.

 

11. Bookworm by Lucy Mangan: Mangan takes us along on a nostalgic chronological tour through the books she loved most as a child and adolescent. No matter how much or how little of your early reading overlaps with hers, you’ll appreciate her picture of the intensity of children’s relationship with books – they can completely shut out the world and devour their favorite stories over and over, almost living inside them, they love and believe in them so much – and her tongue-in-cheek responses to them upon rereading them decades later.

 

10. Everything Happens for a Reason: And Other Lies I’ve Loved by Kate Bowler: An assistant professor at Duke Divinity School, Bowler was fascinated by the idea that you can claim God’s blessings, financial and otherwise, as a reward for righteous behavior and generosity to the church (“the prosperity gospel”), but if she’d been tempted to set store by this notion, that certainty was permanently fractured when she was diagnosed with stage IV colon cancer in her mid-thirties. Bowler writes tenderly about suffering and surrender, about living in the moment with her husband and son while being uncertain of the future.

 

9. Gross Anatomy by Mara Altman: Through a snappy blend of personal anecdotes and intensive research, Altman exposes the cultural expectations that make us dislike our bodies, suggesting that a better knowledge of anatomy might help us feel normal. It’s funny, it’s feminist, and it’s a cracking good read.

 

8. The Unmapped Mind by Christian Donlan: Donlan, a Brighton-area video games journalist, was diagnosed with (relapsing, remitting) multiple sclerosis in 2014; he approaches his disease with good humor and curiosity, using metaphors of maps to depict himself as an explorer into uncharted territory. This is some of the best medical writing from a layman’s perspective I’ve ever read.

 

7. Skybound by Rebecca Loncraine: For Rebecca Loncraine, after treatment for breast cancer in her early thirties, taking flying lessons in an unpowered glider (everywhere from Wales to Nepal) was a way of rediscovering joy and experiencing freedom by facing her fears in the sky. Each year seems to bring one exquisite posthumous memoir about facing death with dignity; this is a worthwhile successor to When Breath Becomes Air et al.

 

6. Face to Face by Jim McCaul: Eighty percent of a facial surgeon’s work is the removal of face, mouth and neck tumors in surgeries lasting eight hours or more; McCaul also restores patients’ appearance as much as possible after disfiguring accidents. This is a book that inspires wonder at all that modern medicine can achieve.

 

5. That Was When People Started to Worry by Nancy Tucker: Tucker interviewed 70 women aged 16 to 25 for a total of more than 100 hours and chose to anonymize their stories by creating seven composite characters who represent various mental illnesses: depression, bipolar disorder, self-harm, anxiety, eating disorders, PTSD and borderline personality disorder. Reading this has helped me to understand friends’ and acquaintances’ behavior; I’ll keep it on the shelf as an invaluable reference book in the years to come.

 

4. Free Woman by Lara Feigel: A familiarity with the works of Doris Lessing is not a prerequisite to enjoying this richly satisfying hybrid of biography, literary criticism and memoir. Lessing’s The Golden Notebook is about the ways in which women compartmentalize their lives and the struggle to bring various strands into harmony; that’s what Free Woman is all about as well.

 

3. Implosion by Elizabeth W. Garber: The author endured sexual and psychological abuse while growing up in a glass house designed by her father, Modernist architect Woodie Garber – a fascinating, flawed figure – outside Cincinnati in the 1960s to 1970s. This is definitely not a boring tome just for architecture buffs; it’s a masterful memoir for everyone.

 

2. Educated by Tara Westover: Westover writes with calm authority, channeling the style of the scriptures and history books that were formative in her upbringing and education as she tells of a young woman’s off-grid upbringing in Idaho and the hard work that took her from almost complete ignorance to a Cambridge PhD. This is one of the most powerful and well-written memoirs I’ve ever read.

 

 

It was a real toss-up between Westover and this one, but since Educated has already gotten a ton of attention this year, I’ve awarded the title of nonfiction book of the year to:

 

1. Under the Rock by Benjamin Myers: A spell-bindingly lyrical book that ranges from literature and geology to true crime but has an underlying autobiographical vein. Its every sentence is well-crafted and memorable; this isn’t old-style nature writing in search of unspoiled places, but part of a growing interest in the ‘edgelands’ where human impact is undeniable but nature is creeping back in.

 

My 2018 nonfiction books of the year (the ones I own in print, anyway).

What were some of your top nonfiction reads of the year?

 

Upcoming posts:

27th: Best fiction of the year

28th: Runners-up

29th: Best backlist reads

30th: Other superlatives and some early 2019 recommendations

31st: Library Checkout & Final statistics on my 2018 reading