Not many non-fiction books could be described as "unputdownable". This one is. A very, very moving account of one man's struggle to lead a fulfilling life despite severe epilepsy. And an indictment of the poor quality of some doctors and specialists. ( )

I found this book to be impossible to put down. The author is very talented at writing, and his memoir is honest and compelling.

Then I read lots of the reviews. They represent a BINGO card of language that able-bodied people use about disability narratives: inspirational, brave, courageous!

And I thought about how folks without the privileges of the author are navigating their experiences with epilepsy, and how we as a society are failing them. And while the author brought that question up once or twice, it was not really dwelled upon. I'm not faulting the author for that: he certainly has enough on his shoulders without having to hoist up the rest of the world. But it's hard to ignore. ( )

Rating: 3.5
Note: Possible spoilers

Kurt Eichenwald was diagnosed with epilepsy in the late 1970s, when he was a freshman at Swarthmore, the prestigious private liberal arts college in Pennsylvania. The first signs of the disease were short episodes of staring. To friends, Kurt would appear to be lost in a world of his own: dazed and absent. He had earlier been ill with paratyphoid fever (with delirium) and had also suffered a concussion. Whether either of these conditions predisposed him to the seizure disorder is uncertain. What is abundantly clear, however, is that he received dangerously substandard medical care for several years. There were serious health consequences as a result.

The poor treatment Kurt received was largely owing to the interference of his overbearing, autocratic father, a renowned pediatric infectious disease researcher. When his adult son’s first symptoms presented, Dr. Heinz Eichenwald, who had a thing against “for-profit” doctors and hospitals, insisted that Kurt see a pediatric neurologist colleague, who was not even a clinician but a research scientist. “Dr. Nicholson” had neither the knowledge nor the experience to prescribe anticonvulsants. He also failed to monitor Kurt’s blood for signs of drug toxicity. Dr. Nicholson led Kurt to believe that epilepsy was a shameful disease that would seriously restrict the young man’s life. An independent life and a stimulating profession? Forget it! Nicholson also cautioned Kurt against informing anyone of his condition and told him that if pressed, he should refer to his condition as a “seizure disorder”—as if it were some discrete neurological condition other than epilepsy. (In fact, the terms seizure disorder and epilepsy are used interchangeably.) Another so-called “neurologist”, “Dr. Craddock”—who, in fact, had no credentials in the specialty and was actually a psychiatrist—kept upping Kurt’s medication dose. When the patient reported disabling side effects, the physician dismissed them offhandedly. He’d never heard of those kinds of drug reactions, he said. A third neurologist (at Northwestern University Hospital), “Dr. Strauss”, determined that Kurt didn’t have epilepsy at all because his EEG (which had been inappropriately administered) was normal. Epileptics can, in fact, have perfectly normal or inconclusive electroencephalograms. According to Strauss, Kurt had a classic conversion disorder—hysteria due to psychiatric problems.

Eichenwald eventually found a good neurologist in Dallas, his hometown, but his problems weren’t over. Although he gained greater control of his condition with the drug Dilantin, the seizures never went away completely. At the center of his personal narrative is a fairly lengthy account of his shocking experience of discrimination at Swarthmore. College officials, particularly the clinical psychologist Leighton Whitaker, fabricated lies about Kurt’s academic performance, social integration, and mental health in order to push him out of the school. Whitaker even bizarrely alleged that Kurt had a brain tumour, claiming that the young man’s Dallas neurologist had failed to diagnosis it. (Clinical psychologists, by the way, are not in the business of diagnosing brain lesions.) In reality—and in violation of federal law—the college’s administration pushed Kurt out because his epilepsy was an inconvenience and the school didn’t want to accommodate him. Eichenwald fought Swarthmore tooth and nail and in the end graduated with his friends..

The remainder of the book documents the author’s entry into the world of newspaper journalism. It covers the many barriers and ordeals along the way. Gaining health insurance was a particular trial and source of anxiety. At least one struggling organization didn’t want to employ Eichenwald because signing him onto the group health insurance plan would make the plan financially prohibitive for all. During this time, it was not uncommon for Eichenwald to have seizures on city streets, only to wake up later in hospital having to face huge bills. During one seizure episode, he was brutally sexually assaulted.

The author has fairly significant memory impairment because of the havoc poorly controlled epilepsy wreaked on his brain over the years. In writing his memoir, he acknowledges that he relied on contemporaneous notes and audiotapes he’d made about his symptoms and experiences, as well as the recollections of friends and family. Some of these recollections by people close to him are included in the text. Eichenwald uses pseudonyms for the “medical professionals whose inattentiveness and poor judgment caused so much unnecessary damage.” He writes that he considered filing a suit against these physicians, but, recognizing that his father might actually side with them and that the legal case could drag on for months or even years, he chose to forgo litigation and get on with his life instead.

I learned a lot from reading this book, but I believe it could have been quite a bit shorter without losing any power. Eichenwald—a longtime investigative reporter for The New York Times, best-selling author of nonfiction, and currently a senior writer at Newsweek—has written a courageous and illuminating book about a brave and determined life. ( )