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Novelist Elyse Bruce Helps Readers Understand MG through the Eyes of a Child

Novelist Elyse Bruce Helps Readers Understand MG through the Eyes of a Child

By Kate Stober

Elyse Bruce is a prolific writer, artist, and musician. She has written dozens of books, including Fantastic Things, a novel that addresses myasthenia gravis. Fantastic Things is the first middle-grade reader chapter book that explains what MG is in easy terms that children, teens, and adults can understand. Her own personal connection to MG – both her brother and son have been diagnosed – inspired her to create awareness about this rare disease through her creative work.


She shares more about her book and her “why” in this interview.

 

Tell us more about Fantastic Things.

Fantastic Things is about nine-year-old Missy Barrett deciding she's old enough to ask her 15-year-old brother, Josh, about myasthenia gravis (he was diagnosed as a child) so she can figure out what to do when her brother is having difficulties because of his MG. The book begins with Missy sitting on the front step of her house with her two brothers, who are playing a one-on-one game of driveway basketball, and Missy is doing her best at being a color commentator. When the game concludes, Missy suggests that she and Josh head over to Icy Delights (a fictional ice cream store) because she wants to get the downlow on what MG is and how it affects her brother as well as how to help him when he needs help.

 

What inspired you to write it?

My late brother was diagnosed with myasthenia gravis as a young teen back in the 1970s. When he first exhibited symptoms, my parents would ask him point blank if he was experimenting with drugs (he wasn't). Finally, they took him to see a neurologist who diagnosed him with MG. He had a thymectomy, and immediately after healing from the surgery, his MG went into remission. He was fortunate in that, as my son also had a thymectomy, but unfortunately didn’t go into remission.

 

My son was diagnosed with myasthenia gravis when he was 12 years old after exhibiting symptoms consistent with MG. Because my son was diagnosed with autism as a toddler, for years medical professionals chalked up symptoms that were consistent with MG to autism, which is why his MG went undiagnosed for so long. But even after he was diagnosed, it was shocking to find out how little people knew and understood about MG, and how much disinformation and misinformation was easily accessible online.

 

My son was excluded from participating in a number of activities through various special needs groups because the organizers didn't want to take chances dealing with a kid who had a disease they didn't really understand. The world can be cruel that way, and I wanted to find an impactful way to share how a child or teen diagnosed with MG is just a child or teen who just happens to have MG. MG doesn't define them; it's something they have to deal with. The more people know about what MG is and how to help a person with MG, the less fearful they will be of interacting normally with people diagnosed with MG.

 

As a character, Missy Barrett has a pluckiness and an innocence. She has a way of taking away a lot of the negative aspects of life because of her outlook. Seeing this disease through her eyes allows readers to understand the disease in a different light. Missy learns about her brother’s MG but doesn’t catastrophize it. She understands that Josh is still Josh.

 

Before Fantastic Things and all my other Missy Barrett books, Missy was a main character in a great many stories I made up and told to my son when he was either in the hospital or undergoing IVIg treatments. It kept his mind off what he was going through at the hospital, and he always had questions about Missy and her world.

 

How do you hope your book will support the MG community?

For me, it's hard to come to the realization that myasthenia gravis is still so poorly understood, since it’s been 50 years since I first heard about MG. The more people know and understand about MG, the more understanding and accepting society will be towards those with MG, and diagnosed individuals and their family members won't feel so isolated from society.

 

Tell us more about your creative work.

Being creative is how I supported my family of two as the single parent of a special needs child. I am a self-taught artist and a classically trained pianist. I have written sound scores for stage productions as well as documentaries. 

 

And I write …

 

I am currently working on the 20th Missy Barrett book. The first time Missy showed up as Missy she was a secondary character along with her brothers, Josh and Aaron, but readers enjoyed her antics so much, they asked me to write books where Missy was the main character. I write as myself (Elyse Bruce), as my other self (E.B. Taylor), and under various pseudonyms.

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