Book Review by Joseph I. Sirven, M.D.
In medical offices across the globe the first question that a physician or healthcare worker will ask their patient with epilepsy is when was the last time you had a seizure? Natural questions that follow include how many seizures have you had since the last visit and has there been anything unusual or different in your life that has occurred since your last visit or since your last seizure. The answer to these questions will often guide the neurologist to change medication, offer new treatment, or continue with current therapy. Sadly, these questions can transform an individual into a pile of seizure statistics especially for the busy neurologist. Oftentimes, the story behind those numbers is lost to the physician.
In Terry Tracy’s compellingly poignant novel she conveys an honest and sometimes brutal picture of epilepsy through the eyes of a young professional woman. This novel that is told in the format of 27 different short stories, each entitled with a location by where a seizure had occurred in the central character’s life, so we get to see what happens, not in terms of counting the different seizures that Mischa Dunn has had, but we experience all of the situations and circumstances that make up her life surrounding her seizures.
The central character in this novel is a young, bright professional woman who emigrates to the United States with her parents after escaping a repressive dictatorship in Chile, and ultimately settling in the Northeast US. Through the 27 short stories that all interweave around Mischa’s life and her epilepsy, we get to see the picture of what happens when that individual or patient goes home. The story takes us to life under a brutal, repressive regime in Chile to the ivy-covered hallways of New Haven, to Georgetown and the diplomatic corps with stops in Guatemala, Cambridge, and world capitals. Between each of the tales we see Mischa’s upbringing, her relationships, and the various ways in which her epilepsy seems to shape her life, and in other ways in which her life shapes her perception of epilepsy.
In one of the most important passages, which occurs in the latter portion of the book, she states, “I don’t really know what it’s like not having epilepsy. I had my first seizure when I was 14. That’s when everyone changes anyway. My change just included epilepsy. I guess it’s something of a presence in my life. It’s strange. It sometimes it’s like a stalker, a predator, a presence in my life. Other times I feel it’s as if it’s more of a companion, even a mentor. It’s part of me. With that said I don’t like being called epileptic. I have epilepsy but it’s not what I am. I am more than that. It’s like being disabled. Some people would refer to my epilepsy as a disability but I’ve never wanted to call it that. It’s limiting. I hate the word disability. I associate that prefix with words like disrespect or disservice or disemboweled.” The passage in essence captures the central tenet of the character’s arc throughout this page-turner of a novel.
The story can be appreciated from multiple vantage points. For some readers, the narrative can be construed as an indictment on the inadequacies of the current medical system for dealing with epilepsy. Yet the author also shows how individual choices can have consequences that are not always appreciated by the person with epilepsy. From a caretaker’s standpoint, one empathizes with the agony of watching someone else in pain. To the individual with epilepsy the book provides a voice to convey the realities of dealing with a condition that is often misunderstood and stigmatizing. Unexpected educational tidbits are sprinkled throughout the short stories, ranging from historical perspectives on epilepsy to modern day management of seizures that even the most knowledgeable would find surprising.
When all 27 stories are considered in their sum totality, one appreciates the rhythms, the cycles, the fundamental realities of what it is like to live a life with epilepsy. For that matter it provides an important perspective, regardless of whether you have epilepsy or any appreciable disability. Throughout the 27 chapters and their different settings, the main character’s voice provides, in essence, a glimpse of what happens between those seizures; what’s really behind the seizure count numbers provided to physicians. Although there is an ironic twist at the end, the story completes and delivers its mission, in that when you finish this novel, you will be left with a sense that you been educated. More importantly you will also have been afforded an opportunity to view the world through the eyes of someone with epilepsy if only to glimpse the truth of what that means and share if only for a few hours the basic bonds of what it means to be human; with or what epilepsy.
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Joseph I. Sirven, MD
Last Reviewed: 3/15/12