Navigating Epilepsy: The Road Ahead

Epilepsy book recommendations for summer reading at the beach and pool

books-164x164Summer is a great time to catch up with our reading of fine literature.  An excellent use of that time can be to read books and novels that feature epilepsy and persons with epilepsy as characters.  These are just a sampling of fantastic novels and books on epilepsy.  Most have been written by persons with epilepsy or neurologists who specialize in treating epilepsy and seizures.

Adult epilepsy novels:

Don’t be turned off by the name: The Idiot by Fyodor Dostoyevsky (famed Russian author who had epilepsy).  This is considered one of his best novels and in it the main character and hero has epilepsy.  It shows how society at that time in Russia looks down on him due to his epilepsy and depicts some powerful interpersonal struggles. Descriptions of auras and seizures are incredible.

The Spirit Catches You and You Fall Down by Anne Fadiman explores the clash between a small county hospital in California and a refugee family from Laos over the care of a child diagnosed with severe epilepsy. A beautiful and tragic book.

Parent reading on epilepsy:

DINGS is a book by Dr. Lance Fogan (neurologist) shows how a military family struggles to understand what is happening with their third grade son who is failing in school.  Initially they think this the result of stress because the father is away in Iraq. But then a neurologist comes in and diagnoses the “blanking out episodes” as epilepsy.  The family’s struggle to adjust to this news is depicted very nicely.

Epilepsy books for children and teens:

Orchestra in our Brain by Cynthia Fabian (a New Jersey local who had epilepsy as a child) is a lovely book for kids that explains seizures in a way that children can understand.  It is recommended not just for children who have epilepsy but for other children.  The author donates part of the earnings to the Epilepsy Foundation of New Jersey.

Rain at Midnight by Kelly Pretz (another New Jersey local who has epilepsy) has written a delightful novel that is a love story and features the heroine’s struggle with her epilepsy and the family’s mandate to keep it secret.  The author donates part of the earnings to the Epilepsy Foundation of New Jersey.

Self-education on epilepsy:

Dr. Marcelo Lancman and his colleagues have written What You Need to Know if Epilepsy Has Touched Your Life: a Guide in Plain English.  The book explains the most up-to-date methods used to diagnose and treat epilepsy and seizures in clear language and also covers important quality of life considerations. The authors donate all on-line earnings to the Epilepsy Free Foundation to support college and summer camp scholarships for persons with epilepsy. 

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