Dear Mr. Ferris,

As you may already be aware, your new book The Unnamed is the new “it” book in the book blogsphere. After reading countless glowing reviews of your book, I decided last night to pick up my ARC copy (one that I got while at Book Expo America last May) and started reading it. I’ve found your story to be extremely interesting and cannot wait to finish it and discuss it with other readers when I write my review. Today though I’m just going to ask a favor. Before I do so I need to give you a bit of background information.

The last couple years of my life have been a whirlwind of triumphs and sadness. I traveled halfway around the world to adopt my youngest child, who at the time was a beautiful nine month old girl who had spent the first couple months of her life in a Chinese orphanage and then foster care. Not even a year later my Mom became ill and passed away from cancer. Two weeks later, a lump was found in my breast and I was diagnosed and treated for breast cancer. As you can see, it’s been a crazy couple of years. But none of this compares to the emotions and lack of control I feel when I watch my seven year old daughter have a seizure.

My daughter has Epilepsy. She was diagnosed a few years ago with this disorder that affects the electrical activity of her brain. It has been our hope that since her brain is still developing that she will grow out of having seizures, but after every seizure we ask ourselves is this something that she will have to live with the rest of her life? How will it affect her as a teenager? What will having Epilepsy do to her self esteem? And this is the reason I am writing to you, and any authors out there who decide to write, even just a few sentences as you did, about Epilepsy in their books. I worry that one day my daughter will read sentences like the ones I found in The Unnamed and not know how to react: 

 ”He knew the sensation as an epileptic knows an aura. As an epileptic feels the dread of an oncoming seizure, he was crestfallen, broken-hearted, instantly depressed by what was now foretold.” *

According the www.epilepsyclassroom.com, the current, more appropriate term when describing someone who has this disorder is “person or child with Epilepsy” not Epileptic. You see, I don’t want my daughter to feel that her self worth is tied up with this scary disorder she has to deal with.  I spend time reading her picture books about children with Epilepsy. We talk about what a seizure is and how it doesn’t define her. I want her to know that she is so much more than a person with Epilepsy.She is a skiier, a swimmer, someone who can draw and play with her friends, a wonderful daughter and good girl, who just happens to have Epilepsy. She is not an Epileptic.

I know that obviously I am sensitive when it comes to this and don’t want you to think I’m picking on you. I am just trying to make it easier for my daughter, as she grows older, to know she doesn’t have to define herself by her medical condition and hope that I help to encourage people to change their mindset and terminology when it comes to Epilepsy.

So I just ask that you and any other author who reads this would just reconsider your terminology the next time (if in fact there is a next time) you write about Epilepsy.

Thank you.

Stephanie

* Please note that I read these sentences in an ARC copy of The Unnamed. I am unsure whether or not they are in the final copy of the book.

My daughter, the skiier!