My journey with epilepsy began when I was just six weeks old. I was breastfeeding when my first seizure occurred. During that seizure, I began choking on the milk, an event that would mark the beginning of a life-long battle. I went on to have countless seizures throughout my childhood, each one more terrifying than the last. I was put on various medications to control seizures, but nothing seemed to work. No matter how many medications I took, I continued having seizures, sometimes up to six a day. The seizures left me exhausted, isolated, and confused. I didn’t have the energy to participate in the activities other kids did, and I felt different like I didn’t fit in.
I kept going, determined to live my life as best as I could. However, as the years went on, I realized that the medication wasn’t enough. I knew something needed to change. It wasn’t until I was older that my neurologist suggested the idea of brain surgery to remove my left temporal lobe, which was believed to be the source of my seizures. The idea of surgery was frightening, and I didn’t fully understand what it would mean for me, but I decided to move forward with the surgery. It was a huge step and one of the best decisions I’ve made. Since the surgery two years ago, I’ve been seizure-free. For the first time in my life, I have the energy to live fully, stay awake, and remember things clearly. I can participate in activities without fear of having a seizure, something I never thought would be possible.
My journey, however, didn’t end with surgery. It became clear that I had been given a second chance at life, and I knew I needed to do something about it. I wanted to help children living with epilepsy who might feel as I did when I was younger – isolated, misunderstood, and alone. I wanted to make sure they knew they weren’t the only ones facing these challenges. I decided to write a book for children, called My Shaky World, that would educate, inspire, and uplift kids going through what I had gone through. I wanted them to feel seen and understood, and I wanted to show them that epilepsy doesn’t have to define their lives. My book tells the story of a little girl named Cashew and her seizure fairy crew. Through rhymes and humor, the book introduces children to the idea of epilepsy in an engaging way without making them feel isolated or afraid. It also highlights the importance of support and understanding. It’s a story of resilience and hope, showing children that even when things are difficult, they can find strength within themselves and the people around them.
Creating My Shaky World has been one of the most rewarding experiences of my life. It has allowed me to share my story with the world and connect with others who are facing similar challenges. I’ve reached out to epilepsy communities in the United States, Canada, England, and Australia, and I’ve been so grateful for the support my work has received. Through interviews and book promotions, I’ve been able to spread awareness about epilepsy and offer hope to children who need it most.
Looking back on my journey with epilepsy, I can hardly believe how far I’ve come. I went from a life filled with constant fear and exhaustion to one filled with energy, hope, and purpose. I overcame my challenges through a combination of determination, support, and a willingness to embrace change. For years, I struggled with constant seizures, medications that didn’t work, and feelings of isolation and fear. Brain surgery was a pivotal moment for me. Despite all the obstacles, I never gave up hope. If you’re living with epilepsy or any other challenge, know that you are not alone. Surround yourself with people who uplift you, seek help when you need it, and always remember that you’re capable of more than you realize. The support I received from my doctors, family, and friends was crucial throughout my journey.
The Epilepsy Foundation has played a huge role in my journey by providing valuable resources and a sense of community. Through their support, I’ve been able to find my voice and purpose, using my story to inspire kids who may be feeling isolated and misunderstood as I once did. Their efforts to educate the public and offer resources for people living with epilepsy have been instrumental in helping me reach more families and children who need to hear that they are not alone.
Perhaps most importantly, I found a sense of purpose in my story. I’ve learned that change is possible, even when it doesn’t feel like it. I faced many hardships, but I never let them define me. Today, I have a passion for helping others, reminding them that no matter what challenges they face, their time to thrive will come. My message is simple but powerful: You are stronger than you think, and your challenges don’t define you. Life may be difficult at times, and there may be moments when it feels like things will never get better but remember that you have the strength to overcome even the hardest obstacles. Embrace your journey, no matter how uncertain or scary it may seem, because it can lead you to a place of growth, healing, and incredible possibilities.
Reviewed By: Sara Wyen
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