Epilepsy Blog Relay: Brain Tumor Survivor writes her first book

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Sierra’s Story

Hello Everyone! My name is Sierra. I am 23 years old and am a brain tumor survivor. I was born with a Hypothalamic Hamartoma and had daily, gelastic laughing seizures. I wasn’t diagnosed with epilepsy until I was 4.

My tumor was “rare” at the time so it was hard finding a doctor to remove my tumor. Thankfully, we found Barrow Institute in Arizona, where my tumor got removed at age 8, in 2004.

Since then I have been seizure free. However, it left me with social anxiety, poor social skills, and learning disabilities. I had a difficult time in school to learn, and had no friends. I got bullied nonstop and never had someone to be my friend. This happened from the day I returned to school without a tumor. I felt more insecure in myself. In high school it all continued.


Related: Tips to feel less isolated and alone after epilepsy diagnosis


However, I graduated high school 6 months early! Recently, I wrote my very first book that talks about all of my struggles and hardships. It is titled “Weird Girl With a Tumor”. It’s available on Amazon. I hope it helps and encourages those going through similar experiences like I have. Please Check it out!


NEXT UP: Be sure to check out the next post by Abby at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Share your story

Epilepsy Blog Relay: 5 Ways to Incorporate Creativity Into Your Healing

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Christalle’s Story

Christalle’s epilepsy story is a tale of surprise, fear, misdiagnosis, and misdirection but one that has taken a positive turn. After a successful career in the fashion industry, she has come to see that her true mission is to work her artistic magic on human hearts—specifically, the hearts of fellow warriors struggling to live out their dreams under the often dark and stormy sky of neurological disability. Frustrated by the negativity dominating many of the “support” groups for epilepsy, Christalle founded her site, christallepistol.com, to fulfill a pivotal need among those it impacts: a positive nexus of story-sharing, education, community, and genuine support.

Excerpt from:

5 Ways to Incorporate Creativity Into Healing

When we intuitively create, we embrace vulnerability and begin moving closer to acceptance of our true selves. Acceptance is a huge part of living with epilepsy or chronic illness. Acceptance of our diagnosis, acceptance that we may never be cured, acceptance of our circumstances, acceptance that it’s up to us to make our lives better in small ways to contribute to our overall quality of life.

Art has been proven to be beneficial for healing. You don’t have to have to be a creative person to be able to reap the benefits of creative exercises that may contribute to your healing. I’m going to share five ways you can easily begin incorporating creativity into your healing practice.

READ MORE

NEXT UP: Be sure to check out the next post by Sierra at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Share your story

Epilepsy Blog Relay: Epilepsy art reveals hidden truths

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Angie made a commitment with 3 other artists that for one year they would daily produce a self-image using any medium and to email the images to each other. She recalls that the experience was playful, fun, and a wonderful way to connect with friends she had known since art school. Angie has collated her images into a film that documents a year in her life with in her words ‘surprising results.’

Angie’s Story

I have dealt with epilepsy all my adult life. One of the most frightening elements is the seeming randomness of my seizure activity. My seizures always seem to catch me unawares. This has always felt both dispiriting and disrupting.

However, after one week of extremely intense seizure activity, I looked back at my artwork from the two preceding weeks. My brain unconsciously knew a seizure was coming, my images had become increasingly darker, with more brevity and darker tone. The project revealed hidden truths by externalizing the internal.

SACRED from angie stimson on Vimeo.

To view more of Angie’s art visit her site at angelastimson.com


NEXT UP: Be sure to check out the next post by Christalle at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Share your story

Epilepsy Blog Relay: A chef shares his experience with epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Stephen’s Story

As a chef, my job requires me to stand over 8 hours on my feet. I live with epilepsy and have poor circulation from my legs to my heart. I found the most difficult time of day was the end of my shift at home was when it was time to go to bed. A few months ago, I lost sleep every night through the summer.

Then, one evening, I was at my work table and felt an aura. It was as if someone took a ball and passed it from my right head through to my left side. I spoke up and informed my supervisor of the bakeshop and she said I should sit and take a break. I drank a bottle of water in seconds and returned to work. I was working for an hour and it was time to take my half hour break. I gathered a little food and went out to the patio. As I sat down the sunset and thunder clouds were approaching. There was darkness and then the seizure.

When I came to, it felt as though dozens of people were surrounding me, from Firefighters and EMS to people from work. I was taken from the sidewalk that seemed to hold me down. I just didn’t have the strength to rise. I was placed in an ambulance and the EMS asked what me my name and date of birth.

After being brought to the emergency room, I was released to go home. As I was leaving I had a seizure that had me fall backward. I then was admitted to the hospital, stayed overnight and released the next day.

I’m hoping to stay seizure-free but at the same time, I can’t believe it will not happen again.

Stephen Piorkowski Epilepsy Scholarship

I have started the Stephen Piorkowski Epilepsy Scholarship. This scholarship has supported 3 students on their journey to college in the last 2 years. It is an honor to see a scholarship recipient succeed and become more involved with Epilepsy.


NEXT UP: Be sure to check out the next post by Angie at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Share your story
1 2 3 4 5 161