A Mind Unraveled

Kurt Eichenwald. A Mind Unraveled. New York: Ballantine Books; 2018 (416 pp). ISBN-10: 9780399593628

In his memoir, “A Mind Unraveled,” Kurt Eichenwald, a journalist known for his work as a senior writer at the New York Times, Vanity Fair, and Newsweek, describes his personal experience with epilepsy, which was diagnosed while he was a student at the Swarthmore College in the early 1980s. Mr. Eichenwald chronicles how poorly controlled seizures and misguided medical care wreaked havoc in his life for decades, but ultimately became a powerful motivating force for his career in journalism and advocacy. As a pediatric neurology resident interested in epilepsy, I ordered a copy immediately. And after a rare free weekend spent feverishly devouring the book, I sat back and realized that this book should be required reading for any medical professional who participates in the care of people with epilepsy.

The book's structure is largely chronological. Recognizing his memory difficulties, Mr. Eichenwald kept extensive audio diaries and letters and periodically inserts short excerpts of interviews or letters from his family, physicians, and friends that take us forward and backward in the narrative. In 1979, Mr. Eichenwald, then a high school student, reports numerous disquieting staring spells when he loses track of conversations and picks at his clothes. His parents, a school nurse and a physician, do not yet pick up on the implications. Then shortly after starting his freshman year at Swarthmore, Mr. Eichenwald wakes up on the floor with his muscles aching and no memory of how he got there. He and his family seek medical care and so begins Mr. Eichenwald's Odyssey through the medical system, a journey populated with heroes, such as his primary neurologist Dr. Alan Naarden to whom the book is dedicated, but also villains and sirens who tout their expertise undeservedly either through incompetence or ulterior motives; these include the deans, psychologists, and physicians who tried to force him to withdraw from college. Through these trials, Mr. Eichenwald develops a “commitment to expose people who abused power” and the investigative and negotiation skills needed to advocate on behalf of victims of discrimination. Despite his own fear of exposure and stigma, he comes to realize how much his voice has to offer others affected by epilepsy. He publishes a landmark article in New York Times Magazine in 1987 describing his experiences and eventually this memoir.

“A Mind Unraveled” is a prime example of the genre of narrative medical writing, an evolving tradition of documenting stories of illness from a multitude of perspectives—patient, family, physician, nurse, etc.—that attempts to honor, humanize, and heal the emotional suffering of an illness. At first pass, the answer should be obvious, but the question is worth asking: what does this memoir offer to doctors, and specifically to doctors in training? Mr. Eichenwald's book highlights the frail nature of the patient—physician relationship, the challenge of the transition from pediatric to adult care, and the fear of discrimination that any person with a chronic health condition faces in the modern world. While his tone is often strident, and at times the physician–reader will wince at the “difficult patient” in the room, the writing is gripping and suspenseful and Mr. Eichenwald's passion makes him an irresistible protagonist.

When we first meet Mr. Eichenwald, he is frightened and easily acquiesces to the worst sort of paternalism from Dr. Charles Nicholson (pseudonym), a prominent academic physician. “What happens if I miss (the medication)?” Mr. Eichenwald asks. “Just don't miss it,” is Dr. Nicholson's unhelpful reply. A few months later, we find Mr. Eichenwald huddled in a remote phone booth on the far side of campus desperately calling Dr. Nicholson as his seizures continue to rage. Dr. Nicholson berates him and Eichenwald seethes in resentment, but laments, “I had no choice. There was no else who might end my terror of losing control.” Eventually this experience and others lead to a powerful rejection of the infallibility and benevolence of the medical profession.

Mr. Eichenwald becomes increasingly autonomous with his medical decisions. After he convulses at home with his father watching on passively, Mr. Eichenwald decides that his father was not able to manage his medical care and he independently finds a new doctor close to college. Having achieved this critical developmental milestone, Mr. Eichenwald then becomes the “sole arbiter” of his health care decisions. For any young adult this is a difficult transition; however, for Mr. Eichenwald, as with other children and adolescents with epilepsy, it is particularly challenging when the normal trajectory of maturation is interrupted by the emergence and diagnosis of a chronic medical condition. The adolescent-to-adult health care transition is increasingly addressed formally in pediatric and primary care practice, but how should we as pediatric neurologists specifically counsel our often-complex patients about navigating the medical system without the help of their parents? Potential topics that should be explicitly addressed may include remembering medication schedules, refilling prescriptions, medical alert bracelets, advance directives, scheduling appointments, and obtaining health insurance.

We also need to address the social and professional consequences of such a diagnosis with our patients, even if it has been years since first presentation, as they will be newly independent in confronting the consequences. What will their epilepsy mean for friendships and romantic relationships? Eventually, Mr. Eichenwald comes to trust and rely on his wife, herself a physician, and accepts potentially destabilizing medication changes to achieve better control of his seizures. When is it appropriate to reveal or conceal a diagnosis of a disorder like epilepsy that may present with a potential emergency in a public setting as when Mr. Eichenwald has seizures on the newsroom floor? What recourse do our patients have when they find themselves victims of discrimination because of their diagnosis? At first Mr. Eichenwald is counseled to keep his epilepsy a secret and his efforts to maintain that fiction lead to dangerous delays in his medical care and an undue burden on his friends and roommates. However, Mr. Eichenwald also suffers considerable professional discrimination when he does reveal his diagnosis, followed by attempts to expel him from college or several employment positions.

While we may assume that the situation has improved in the past 40 years, substantial challenges remain that make Eichenwald's writing all the more relevant. Access to health insurance for people with pre-existing conditions appears tenuous and subject to the vagaries of the current political climate. The internet provides our pediatric patients and families with both useful and controversial information and remedies, with opportunities for support and connection, but also with risks for bullying and harassment. If “A Mind Unraveled” reads like a call to arms, it is because one is sorely needed and the physicians and health care providers reading it should make their own commitments on behalf of our patients and their families against the abuse of power within our own profession and in society at large.