As a physician who took care of people with debilitating chronic illnesses, I was often inspired by their determination to not let their illness define their lives. I think that’s why this book resonates with me. Although it was painful to read his story, Kurt Eichenwald’s experience of being diagnosed with epilepsy in his late teens, living with the disorder, and finding appropriate treatment has much to teach health care providers about what patients need and want as they navigate life with a chronic illness.
Eichenwald was determined to live his life, on his own terms, despite frequent medical setbacks. His account is unflinching in how his chronic illness affected him and his relationships with those around him. Although I read it while wearing my “doctor hat”, the book has much to say to all of us about chronic illness, the health care system, friends, family, forgiveness, and even what makes a meaningful life.
The opening quote of the book, from Maya Angelou, distills what Eichenwald wants other patients to get from reading it. “You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” The book is his explanation of “the secret of how to find happiness, how to recapture control, how to build a life worth living, even in the wake of significant trauma.” (p. 7)
When he was about 19 years old, the seizures became more frequent and severe and Kurt was referred to an academic neurologist by his father, a physician. That doctor diagnosed him but didn’t explain the illness or the follow up needed or answer any of the patient’s questions. Kurt, as a young man, did not have the language to insist on better communication, or to explain how severely his life was affected by what was happening to him. This combination of factors led to medical complications and hospitalization. Kurt almost died before he got the care he needed.
After about 2 years, Eichenwald’s mother found him an excellent clinical neurologist, Dr. Naarden, who finally treated Kurt as a whole person. When Dr. Naarden, explained that he wanted to put Kurt in the hospital for a complete work-up and initiate appropriate anti-seizure medications, he admitted that it may be trial and error to get the right treatment with the least side effects. “But I won’t quit on you… For the first time, a doctor was admitting the truth about the elegant complexities of the brain…that there weren’t always simple answers…that this amazing organ guiding our central nervous system required respect and awe before treating problems with its functioning.”
This book demonstrates what it feels like to be diagnosed with a serious chronic illness and how the patient’s own understanding and ability to participate in his care evolves over time. Kurt admits that his youth and stubbornness at times interfered with his care but is equally clear about when his physicians confused him, neglected him, dismissed his concerns and endangered his health.
Eichenwald also highlights the practical issues of being a patient. He was ill before the Affordable Care Act went into effect and feared being unable to obtain health insurance, which was tied at that time to employment and often exempted pre-existing conditions. His seizures created memory loss, especially right after a seizure, and he often had to rely on witnesses to describe what had happened to him and to communicate with the health care team.
Dr. Naarden demonstrated what it means for a doctor to take care of a patient with a severe chronic illness: mutual trust, awareness of the patient’s vulnerability, communicating expectations and caring, educating the patient, learning the patient’s priorities for his/her life, and walking the journey together. As doctors, we often want to cure patients, which is not always possible. But we can listen and try to make their lives better.