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Writer's pictureMarissa DeVaul Parmer
Jun 23, 20234 min read

Epilepsy Online Community=Check Out Sara Staggs Story And Book

Friends And Family Fridays

Last week I spoke of the Epilepsy Community Online and how it has helped me and enjoy meeting people via my Twitter and or my blog. I reached out to an individual who I follow and she RT's about my blog to see if she would be interested to be featured. I was highly interested because she recently had written a book about epilepsy which began as a journal/blog which also showed her experience with having a RNS implant which I have. Everyone's experience varies. At the bottom of reading about her journey, you can see where to follow her and also where to purchase the book.

I introduce to you Sara Staggs, a fellow online

Epilepsy Survivor and Advocate turned writer.

How did you become an epilepsy advocate?

Honestly, I never intended to become an epilepsy advocate. I was a person who had epilepsy: It had become a part of my daily life, and I just accepted that. I think that the idea that I needed to speak out about epilepsy came when I joined Twitter (seriously!) to meet other writers. I began to see that there was a whole epilepsy community on there, and that people really needed help and were using the epilepsy Twitter community as a sort of lifeline to share their experiences. I thought I should get more involved. So, I started blogging about different epilepsy issues, running a support group, Uncontrollable came out, and I started speaking about epilepsy issues at hospitals and non-profits, and on the book tour. I enjoy teaching not only people outside the epilepsy community about epilepsy (what it is, what it isn’t, seizure first aid etc.), but connecting with people inside the epilepsy community – people with epilepsy, caregivers, doctors, nurses, medical students. Being an actual advocate is something that I just fell into, and it feels right.

History with epilepsy?

I was diagnosed with epilepsy when I was about 18-months-old. My seizures were very well-controlled when I was growing up; I can’t remember having one between the ages of 2-10, and then I was seizure-free from 10-18. They came back in college, mostly because my lifestyle totally changed – I was under more stress, staying up late, joined a sorority, so I was going to parties and drinking a lot. But, then they were pretty well controlled by medication under I was about 34 with my second pregnancy. I had to stop practicing law, and had two brain surgeries between 2017 and 2020. Now, the RNS is really helping, and I have a complex partial seizure about once every six weeks – maybe once every two months – which is a HUGE improvement. I need it to help more, though, because I want to drive again! Epilepsy goals.

When did you decide a book would be a good way to advocate for epilepsy?

I started writing Uncontrollable as therapy to get rid of the PTSD of pre-surgical work-ups at different hospitals. I kept a journal in each hospital, and when I got home, I wanted to get the memories out of my head, so I started writing what happened. I honestly never meant to use Uncontrollable to advocate for epilepsy, but it’s become something that people in the epilepsy community can relate to and people outside the epilepsy community learn from. Only when it came out in May and I started on the book tour did I realize what an impact it could have for people with epilepsy. I’ve received emails from so many people with epilepsy saying “Thank you” “Someone understands” “I’ve given this book to my mom/boyfriend/cousin/friends.” I never could have imagined what a difference Uncontrollable could make

How long was the making of the book? Any details you want to share for those to understand the nature of the book?

I started writing when I got back from having my RNS implant in 2020. It’s 2023, so from start to finish was about three years. The final edits were done in December 2022, and I was so anxious that this book would come out and everyone would think it was terrible, but the reviews and the reception have been overwhelmingly positive. Uncontrollable is part fiction, part “auto-fiction.” The fictional parts are the backstories of the characters; the “auto-fiction” parts are the medical scenes. Auto-fiction means fiction that is based on or inspired by the author’s lived experiences; it is meant to give a more authentic feel to the novel. Essentially, if you are reading a medical scene in Uncontrollable, it is based on my experience. If you are reading one of the backstories, it is pure fiction.

Where can your book be found? Cost?

Uncontrollable is available on Amazon (paperback and ebook), Barnes and Noble (paperback and ebook), Powell’s Books, Target (online), and you can order it through any indie bookstore you like. A paperback is $19.95, and e-book is $5.99.

Where you can reach out to Sara on SM:

Twitter: SaraStaggs

IG: @sarastaggswrites


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