Everyone’s Got Something: My First Year with Celiac Disease, Authors’ Interview, Part 2

Interview with the authors of
Everyone’s Got Something:  My First Year With Celiac Disease!

High-schoolers Hallie and Rayna, along with their mom Lori, answer questions about Everyone’s Got Something: My First Year with Celiac Disease, a fictional story about a girl diagnosed with Celiac Disease. In addition to the story, there are extras:  “what to look for on ingredient labels, ‘BIG’ word definitions, questions to ask at a restaurant, the best brownie recipe ever, insight from a mom, and the chance to start your own journal!” Check out the book on Amazon and Barnes and Noble.com. Portions of the proceeds will be donated to the Celiac Disease Foundation.

NG:  How old were you when you were diagnosed with Celiac Disease? What grade?
H&R:  We just turned 13 years old, and in 7th grade. 
NG:  How did you feel when you found out?
R:  Shocked, confused and determined to deal with it in the best way I could.
NG:  How did you explain it to your friends?
R:  We told our friends we had a huge announcement, to which they replied, “Oh my gosh, we’ll be the bridesmaids!” which was comic relief that we didn’t know we needed. When we told them we had celiac disease we didn’t even fully know how to explain. A couple of our friends assumed they knew what gluten was (incorrectly) and at the time we didn’t know how to correct them, which is now something we have since learned and mastered how to do.
NG:  What was the biggest change you had to make?
H:  The most drastic change was converting our entire kitchen into a 100% gluten free space. This required getting rid of many kitchen items and running many loads of other items in the dishwasher. The most difficult change was eating outside of our house. It was hard to find restaurants that could prepare food safely. A lot of restaurants offer gluten free options, but they do not all prepare the food safely and without cross contamination. Another change involved having to bring food with us when we went out to eat or eat something before.
NG:  Why did you decide to write the book?
H:  The idea for the book started after we began writing down our thoughts and experiences as a way to process the changes that were occurring. We decided that it might actually benefit others to read it so we thought about how to organize our thoughts, our feelings and our experiences into a book format. When we were diagnosed, we looked for books on celiac disease for tween/ teenagers and we mostly found picture books for younger kids and heavy research, scientific books more geared for adults. We wanted to create a book that suited the tween/teen age group.
NG:  Did you want the book to be fiction, non-fiction, or both?
R:  We wanted it to be a bit of both! We created a fictional character to tell about many of our real life experiences. The main character is a mix of both of us with a few fictional aspects, but her experiences are completely based off of ours.
L:  Our goal was to create a relatable character that inspires hope and optimism in the face of a major life change.
NG:  How long did it take you to write the book?
L:  The [girls] were diagnosed in spring 2014. The initial draft was completed by the summer/fall 2015. However, we went on to more than double the book the following year or so. We started the publishing process the summer of 2018 and it finally became available for purchase this past March. It is available on Amazon and Barnes and Noble websites in paperback and it will be available as an e-book by May (for Celiac Awareness Month). People can start their own journal at the end of the book which lends itself more to the paperback version, but a lot of people enjoy e-books, so we wanted to make sure it would have that option as well. 
NG:  How did you two and your mom collaborate?
R:  We wrote a lot of it together, but also some separately. We each read every section to ensure we were happy with the end result and that the voice of Lexi stayed consistent throughout the book! Writing it was all teamwork! 
NG:  Did you work with an editor?
L:  Yes, we worked with a local editor from Westfield, Lillian Duggan. She was referred to us by Eva Natiello. Eva spoke with us in the very beginning of the publishing process to give us a guideline and some suggestions of how to proceed. Lillian was meticulous in her editing and really helped ensure there was consistency in the character’s voice as well as making sure it was grammatically correct, yet vibrant and true to how a 13-year-old might speak and write in her own journal.We worked with the staff at Jera Publishing who helped with all things publishing: formatting, the cover design and interior images that are throughout the book. There are a couple of original drawings by Rayna and Hallie that are in the book.
NG:  Did you have to do a lot of research?
L:  We did research to back up any facts that were included and particularly the “big” words that were used. We include a glossary in the back of the book called Big Word Definitions to explain the more complicated words associated with celiac disease. For example, cross contamination, endoscopy and villi are defined in the book. It was important to us to use the accurate vocabulary to describe celiac disease, but also break the “big” words down to increase understanding for readers of all ages. 
NG:  Are you planning on writing any other books?
R:  Who knows?! We’re not opposed to it and would be willing to sometime in the future. We might already have some ideas in the works :). For now our hope is to be able to get this book into the hands of people who could really benefit from it. 
NG:  Any other comments you’d like to add?
H&R:  Celiac disease is something that is part of us, but does not define us. We are grateful that we were diagnosed when we were, that we now know what is healthy for our bodies and that we have had to opportunity to meet really good people that we otherwise would have likely never met. 
Also, the title seems to strike a chord with a lot of people whether they have celiac disease or not – we did feel that it is true that “Everyone’s Got Something” – sometimes you can see it, sometimes you can’t, and sometimes you have more than one thing – we hope the book serves as a resource to both empower and reassure people that they can do this!  

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