Hope for HH recently caught up with Sierra Crislip, a young woman that is not just living with HH but thriving with HH. She recently became a published author with her first book titled, Weird Girl with a Tumor! It is a very powerful look into the life of a young girl diagnosed with HH and coming to terms with what her life could be – if she was willing to follow her heart.
Why did you want to write this book?
I wanted to write my book to share my story of my rare hypothalamic hamartoma (brain tumor). Also, expressing my hardships and experiences such as getting bullied in school, but graduating high school early has been a big accomplishment that I want to inspire others and know they can achieve things and not let road blocks stop them.
How did you get started on your writing? Was it specific memories you wanted to share or with a message in mind?
I got started on my writing by using my memory as I am excellent with remembering dates as they click in my head, whether it was a good or bad experience. Since I went through a hard time in my life with a brain tumor, seizures, and having no friends, I wanted to spread the message and help others who may have been through similar experiences as I have. I wanted to give them courage to know they will get through it.
What was your biggest challenge with writing this book?
The biggest challenge I had with writing my book was memorizing certain things that I just could not remember. I had my mom explain some things that happened to me when I had seizures, such as passing out. Hearing about some of my experiences made me shocked that I went through these and made it through.
Did it help you process some of your feelings about growing up with HH?
It has helped me a lot to process my feelings about growing up with HH. I’ll always remember that, at the time, when I had HH, it was rare and I was one of a few people who had it back then. Writing my book and sharing the experiences has helped me overcome a lot of my past hardships, such as getting bullied in school, trouble with keeping up jobs and being in college, etc. I am so proud that my family and those who couldn’t understand me very well, got to see how hard it was for me and now they do not judge. They all understand a bit more about me and have compassion for what I went through.
You have said you are normally a very shy person. Has writing this book help you open up and share your story with others?
I am a very shy person, with high social anxiety, but writing my book has given me some encouragement and strength to open up and gain some social skills to share my story with others and be proud. It’s because it was a huge accomplishment for me to write a book and I couldn’t be more proud to express my exhilaration to those who have criticized me and never believed in me. I bravely reached out to local news stations, newspapers and am grateful that I got to appear on the news. It was tense and brought anxiety to me, but in a happy, joyful way. Sometimes I do little acts of kindness to others such as smiling, let them go in front of my in lines, and even hold doors open. As I share my story more and more with others, I believe it will help me overcome my shyness and soon, I will be an open and happy communicator. It’s okay to be shy, but I have found ways to work on it a little every day.
Would you recommend writing/journaling to others with HH? Why?
Yes, I would totally recommend writing/journaling to others with HH as it would be amazing for them to share their own different stories and see how far they have come. We all might have the same experience like a tumor, or seizures but all our stories are unique and that’s what makes our experiences interesting and that we all pulled through. Each person who journals/writes can inspire others in many different ways and we can all look back at what we wrote and be proud that we are not alone. We are strong.
Will you write another book?
I am hoping to write another book at some point when I have another BIG stepping stone to share with others. Right now, I am working on deciding what career is right for me and trying to study and look into different ones to see which one is my fit. Once I have a career I am happy with, I’ll be happy to write another book and share it with others. I change my mind a lot, so I’m taking just little baby steps.
We would like to thank Sierra for sharing her story and brining awareness to the many challenges individuals with HH face everyday. She is a true inspiration and incredible advocate for our community!
You can purchase Sierra’s book on Amazon, see her appearance on Good Day Sacramento and follow her on Facebook.
