The best books about epilepsy

This is the book that made me want to write a historical romance. The protagonist, Miss Jane Fairfield, is outlandishly rich. But she can’t get married and leave her younger sister, who has epilepsy, to the well-meaning but cruel treatments recommended by their uncle, who is also their guardian. Since her money makes her an appealing target for many an impoverished rake, Jane has to work extra to become unappealing while still seeming like she’s trying to attract a man. She wears obnoxiously bright clothing, insults people with the kindest tone, and—in one desperate attempt to make a man be mean to her—takes the food right off his plate. This is a book about people trying to put you in your place and keep you small. And let me give you a hint: it’s a romance, so there’s definitely a Happily Ever After, and that includes small-minded people getting their… show more.

Claire is an irreverent delight in person, but you won’t see much of that persona in her stories – this book is heavy with gooey and bizarre body horror that always has a deeply personal context for her characters.

She’s admitted that writing is a vehicle for talking about her epilepsy, but you don’t need to share that with her to relate to the strange changes that take place on her pages.

This is just her first collection, an opening salvo across the bow of Australian horror, so it will be interesting indeed to see how her work evolves and metamorphosises over time – to meet the creature that crawls, slime-slicked and hungry, from the casing of her next books.

Corkin, a research psychologist, presents a fascinating case study of her patient, Henry Molaison, a man with no memory. Molaison—or H.M., as he was known in the scientific literature until his death in 2008—was a 27-year-old with severe epilepsy when he underwent radical brain surgery in 1953 to cure his intractable seizures.

Though Molaison’s seizures largely abated after the operation, he developed an even bigger problem, which manifested almost immediately after his surgery. Daily events vanished from his mind almost as soon as they had occurred.

Like most patients living with dementia, he could form no new long-term memories. With no new memories, he lived in a perpetual present, disconnected from his past (or at least the past after his surgery) and his future.

When sixteen-year-old Leilani and her father traveled to O’ahu from Hilo to try a promising but experimental treatment for her epilepsy, they never expected to be stranded in the middle of a worldwide geomagnetic storm. With tsunamis striking randomly, all modern technology broken, and facing food shortages under martial law, Leilani and her father have to fight their way home. Along the way, Leilani discovers that the one thing that makes her different may be the one thing that saves us all. It’s an apocalyptic page-turner centered on Hawaii’s ecology and traditional cultural solutions.

I have chosen this book because of the idea behind it.

After recovering from a blackout, author Torbjørn Ekelund was told he had developed epilepsy and would not be allowed to drive. As a consequence, Ekelund decided not to be held back by this and instead began to walk everywhere – through urban areas and countryside – looking for any path however obvious or hidden.

In the book that resulted from this new approach to life, Ekelund has not only written about his own experiences but tied them in to a wider meditation on pathways, from the physical to the metaphorical to the spiritual. 

A mix of history, philosophy and travelogue, what I liked about all this is the author’s choice to turn the trauma of an epileptic fit into an opportunity to walk, think, observe and feel more than ever.

Love it or hate it, this is a truly unique book. Slater presents herself as the ultimate unreliable narrator, describing her life-long struggles with epilepsy, only to reveal that her diagnosis is a lie. (Or is it? Apparently, even she is not sure.) Which makes the experience of reading Lying a slippery head trip. One becomes easily absorbed in Slater’s evocative prose and haunting descriptions, only to be reminded a sentence later that it may all be complete BS. 

Some readers might be turned off by what is, admittedly, a bit of a mind fuck. Me, I’m fascinated by it. Lying offers the opportunity to vicariously inhabit a mind not quite tethered to truth… thus forcing readers to contemplate our own relationship to Truth.

The Spiral Staircase is the book I’ve read the most number of times as an adult. It is the autobiography of Karen Armstrong who was a Catholic nun for six years in the 1960s in the UK. The book picks up after she leaves her convent and is studying English literature at Oxford University. She is also suffering from mysterious episodes of fainting and memory loss, and so we are taken into her struggles with both academia and the psychiatry of the 1970s. She then spirals through other careers and eventually returns to God – not now as a person of faith but as a writer about religion – its beauty and its tension.

This is perhaps the most honest book I’ve read, as it unflinchingly describes the experience of making terrible mistakes – as we almost all do – without blame or self-flagellation. Karen Armstrong learns, in the end,… show more.

With Pete Greig’s How to Pray, the subtitle says it all: A Simple Guide for Normal People. Greig is a worldwide authority on prayer, but as a self-described “scruffy Brit,” he writes in a way that makes prayer both appealing and accessible. With disarming humor and candor, Greig addresses questions we’ve all asked, from why God heals some people but not others (Greig’s wife, for example, suffers severe epilepsy) to whether or not it’s okay to pray for a parking space. (Spoiler alert:  Greig says yes to parking place prayers, since doing so equips us to live life with greater gratitude. Love that.) I have more than two dozen well-loved books about prayer on my shelf, but How to Pray might be my favorite. It is, to borrow a word from the Brits, “brilliant.”

Because You’ll Never Meet Me is a YA novel that takes quirky friendships to a different level. Ollie is allergic to electricity and Moritz suffers from a rare heart condition. He was also born without eyes. Because of their medical issues, Ollie and Moritz can never meet. Ollie’s mom and doctor urge him to befriend someone like him and he and Moritz become long-distance pen pals. Their friendship is brought to life through the heartfelt letters they write to each other. There’s also a dark secret about their past and where they came from. 

I really liked this book because beautiful, blonde, former model Saidman Yee (wife of the popular yoga teacher Rodney Yee) seems so perfect on the outside that one couldn’t imagine she’d ever have had a notable problem—let alone a seizure disorder or substance abuse issues. Growing up in Indiana, one of seven kids, the author ended up posing for glamour shots and making a name for herself in the fashion world. But inside she experienced anxiety and fear of failure. Saidman Yee’s vulnerability and authenticity shine in this candid story of how yoga helped her go within and honor her true self. Wonderful yoga sequences designed by Saidman Yee are included.

They say the law is perpetually at least five years behind new developments in technology.

Nowhere is it more important to reverse this phenomenon than in neurotechnology. We may not understand the brain, but that hasn’t stopped neurotech startups and big tech companies from trying to eavesdrop on and interpret its bioelectric signals.

Farahany, a bioethics professor at Duke University, says that this market is expected to reach $21 billion by 2026 largely because it will be a boon for surveillance capitalism. The devices don’t even have to actually tell you what a person is thinking or feeling for the information to be used that way by companies and governments.

People become credulous when AI tells them something, whether it’s a policing or recidivism algorithms. Wearable says you are about to commit a crime or have an affair? 

Farahany makes an impassioned argument to build the legal framework that will… show more.