During my freshman year at college, I made a list of general life goals. At the time, I thought I could accomplish them all before I hit 30 (which seemed a world away at the time)! Reduce suffering in the world. Become a mom. Visit every continent, including Antarctica. Live in another culture. Watch a sea turtle nest hatch. Grow my own garden. Publish a book. Now that 30 is just around the corner, my time frame must expand. However, this week I can check off one surprising goal. I became a published author of a children’s book, Karen’s Epilepsy.
As a second year medical student, publishing a book was not the first thing on my mind. However, I had already written the story with black and white illustrations as a combined high school project for an art class and my Girl Scout Gold Award. As a child with epilepsy (which I discussed in a previous blog entry here), I had noticed the lack of children’s books about seizures. I also noted whenever epilepsy was mentioned, it usually was in the context of generalized seizures (somebody falling and shaking). I had complex partial seizures, which are more common but less recognized. Thus, the idea for an educational and entertaining children’s book emerged.
As a high school student, I got a small grant from Parke Davis drug company to fund a limited self-publication. My “self-publication” consisted of photo-copying pages on thick white paper and binding them in a plastic coil! In hindsight, I do feel a bit mixed for allowing the owners of several brand name epilepsy drugs to sponsor my book. Yet I am still grateful, and hope my feelings will not lead me to become a biased physician in the future.
I distributed my plastic-bound “ghetto” version of Karen’s Epilepsy to local schools and libraries in my town. Still, my dream was to make it available to children with epilepsy through the Epilepsy Foundation of America’s bookstore. I hoped that it would be inspiring for children to know that somebody with epilepsy wrote a book from their own experiences. Additionally, I felt the shame and stigma associated with epilepsy in our culture, and I wanted to help promote the idea that people with seizures often are normal.
Now, skip ahead 10 years. Several children’s books have been published recently about epilepsy, but to my knowledge none are about complex partial seizures, or written by a person with epilepsy. Through personal connections I got an e-mail from WriteLife, a non-profit publisher, about my book project. Perhaps it was still not too late to make Karen’s Epilepsy a real book.
I met with Cindy, the managing director, last May, and was surprised by the friendly encouragement she provided from WriteLife. This would be their first full-color children’s book, and as a mother herself, she thought it would be great. She was understanding of my being in medical school, and was willing to work on the project without giving me any deadlines. All I needed to do was change the illustrations to color, which was a task that ended up taking me until November! When I sent the drawings at last, I thought it would still take AT LEAST half a year to become published, and probably more. So, you can imagine my surprise when I got the proofs in January!
Since then, I’ve been e-mailing back and forth with WriteLife to edit the layout, which included a long internal debate about whether to add that I was a medical student to my biography (my dad convinced me to do it in the end). While nothing is perfect, especially looking back on a book I made when I was 17, I am thrilled that I can hold the story – now a real and charming little book- in my hands. I hope this will not be my only publication, nor my greatest publication for that matter. But, I am excited to imagine my book in the hands of another child who can relate to Karen’s emotions.
The story itself is a bit autobiographical. Karen is unhappy when her family moves to a new town until something unexpected happens at school. My family moved many times, and it was always hard to move to a new place where nobody would be familiar with my epilepsy. Despite the challenges, there were many interesting coincidences. I learned that my first grade teacher had epilepsy, and a middle school classmate who made fun of me later had a seizure himself at school!
Karen’s Epilepsy is available on Amazon, Barnes & Nobles, and the Epilepsy Foundation of America‘s online bookstore. I’m not sure how this book will influence my medical training, but there is an obvious medical connection in the story, and I hope it will be a positive asset.
Posted by Liz 
