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As we get into the summer season, there is nothing better than settling down with a good book to read either on vacation or at home to pass the time. This summer greets us with two excellent books where epilepsy serves as either the main character or the main driving force propelling the narrative: the fictional novel Dings by Lance Fogan, a clinical professor of neurology from the David Geffen School of Medicine at UCLA, and Thomas McGranahan's autobiographical story Under Siege: Living Successfully with Epilepsy. Each book is a quick and easy read (I managed to complete reading both on a recent transcontinental flight). When read in succession, these books provide two bookends yielding a compelling journey in appreciating what a life with epilepsy means.
In Lance Fogan's novel Dings, the story of Connor Golden unfolds, an eight-year-old, third grade student who is failing school and his family and teachers and the educational bureaucracy just can't understand why. Told in a realistic but page-turning manner, the book plays out as a medical mystery that finally reveals itself towards the end. By that time, the reader is left with the impression of how difficult it is for someone to be diagnosed with epilepsy and take on the role of having to educate everyone around you when you are struggling as a parent and patient to grasp the situation.
Thomas McGranahan's biography is another fascinating study and one could view it as a sequel to Dings if one were to follow the lead character from Dings and make him a married father of two. In this book, we see the same issues that we see in Dings surrounding the diagnosis, the physicians, the hospitals, but in this true story, replace the educational bureaucracy with any company's human resource department like those in Under Siege and one fully gets a true glimpse of the lonely fights and battles that one has to deal with on the employment front when epilepsy is diagnosed and all manners of rational thought and humanity are lost.
Both books emphasize strikingly similar themes; particularly how the word "epilepsy" seems to serve as an imaginary dividing line in the lives of all of the characters. Once that word is uttered as a diagnosis, patients and families are left to grapple with the enormity of the situation so much so that one's life can be divided between BE (before epilepsy) and AE (after epilepsy). We also observe the endless social barriers that provide a hint of how difficult it is to accept this condition which is necessary in order for transformative healing to occur.
Both works can be best summarized by a quote from Connor Golden's mother, an English major, recalling her college Faulkner seminar. "She always remembered what Faulkner stood for, his works emphasized, his philosophy about the human spirit: that it was undaunted and tough. Man would outlast all degradation and strife. Man would always endure. His novels were full of those themes." Reading these novels back-to-back clearly reflect Faulknerian themes of endurance, perseverance and the importance of hanging on to hope when all things seem so dark and misunderstood.
Both stories also capture the idiosyncratic nature that is epilepsy, differentiating it from other medical and neurological conditions. These books remind us about epilepsy's uniqueness. It was wonderful to root for Mr. McGranahan when he managed to pull himself up by the bootstraps and start his own painting business simply because self employment was the only way to hold down a job when employers are so misinformed about epilepsy. One couldn't help but wonder if that's the fate awaiting the young protagonist of Dings. After assuming that I understood the plight of individuals with epilepsy, reading these books reminded me that perhaps I didn't know as much as I once thought I did.
You can find both books on our Amazon.com store
by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com