Blog #51: DINGS, My Epilepsy Novel, Came to Life and Touched a Family

(This blog was originally posted on October 26, 2014)

 

 

          I was recently invited to a local restaurant by a woman who lives in my city. The restaurant had displayed copies of DINGS, as a novel written by a local author and she purchased a copy. The woman wrote:

Hi Dr. Fogan,

I just finished your book. If I didn't know any better I'd say that story was about my mother and I.  I am now 46, so for me I'm going back about 40 years. It took different doctors to figure out that it was Epilepsy. Then there were the drugs, Dilantin, Phenobarbital and Tegretol.  No drug ever stopped them, perhaps slowed them down, I had "dings" with the funny feeling in my stomach and the fear of another one coming on -throughout the day, everyday.  Left temporal lobe epilepsy.

 

It must have been the late 80's early 90's when my mother and I walked into our Dr's office for a routine visit.  The doctor told my mother that I would be a perfect candidate for this new procedure they we're doing at UCLA and that we should look into it.... I was 23. My surgery occurred in 1993.

The change over wasn't easy though, the seizures had been my life. But today, I have been married for almost 10 years and we have 2 beautiful children. So thank you for your story.

            Our breakfast meeting was made so that her mother, who was visiting from out of town, could also meet me. When I entered tears filled the younger woman’s eyes as she rose to greet me. Her speech occasionally halted and her eyes moistened as both women related their lives and the daughter’s difficult epilepsy stories during our two and one-half hour visit. I was deeply moved. Our meeting was a valuable and touching experience for me.

            The narrative in my novel tells a mother’s story as she tries to account for her bright 8-year-old failing third grade. His learning problems were due to unrecognized complex partial seizure confusion blank outs. As the e-mail above states, my fictional characters’ experiences in DINGS were so very close to the actual life experiences of both of these women. My new friend’s complex partial seizures similarly were not recognized in school. A teacher even struck her during one of her blank out-confusion spells thinking she was on drugs. Her student-friend came over to restrain the teacher, saying, “Stop! She has epilepsy.” Hallucinating foul odors were commonly experienced by the protagonist in my novel but these were not part of her complex partial seizures. But, both the fictional character and my new friend experienced confusing, difficult to explain rising abdominal sensations and fears. She fidgeted her hands. These are classical symptoms of the complex partial seizure form of epilepsy.

            Her mother described how her daughter’s situation was continuously on her mind; she never knew when she’d get a frantic call concerning her daughter’s very frequent seizures while she ran an active business enterprise. The older woman said that she also had to be extremely alert when her daughter took baths or showers at home, and she would never take her eyes off of her daughter for a second when they visited the beach.

            DINGS highlights that successful life can be achieved while living with epilepsy. My new friend is able to drive and she has a happy family life caring for her lovely family.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel. It is a mother’s dramatic story that teaches epilepsy.