Kristen’s Story: Finding the Positive

I was inspired to do a fundraiser for the Epilepsy Foundation because I have been living with epilepsy for 13 years. I was diagnosed at 30 years old after I started having grand mal (tonic-clonic) seizures out of nowhere. After finally finding the right medicine to control my seizures, I have been fortunate to live a pretty normal life.

However, after 11 years without a seizure, I had a grand mal seizure at home in January 2020. It was very disheartening. Even being fully compliant with medication does not guarantee you won’t have a seizure ever again. 

Looking for Life’s Blessings After a Setback

After feeling all the emotions and experiences that go along with having a setback (dealing with doctors again, dreading uncomfortable EEGs, and losing my driving privileges again), I decided to make a concerted effort to really try and focus on my blessings in the situation. I realize I am a lot better off than many people who live with uncontrollable epilepsy.

I currently work in healthcare as a unit coordinator in the ICU of a local hospital. I’m also a musician whose goal is to inspire and lift people’s spirits. 

Working in a hospital, I have great health insurance. I am blessed to have amazing coworkers who all make sure I have a ride to and from work every day. My family and friends are very supportive and loving. 

I have a great sense of humor, which is very necessary in life and can help anyone get through most anything.

The thoughts of, “What if I have a seizure while I’m performing on stage?” will not get in the way of me doing what I love. 

Looking Forward to Cures for Epilepsy

It’s hard to accept that there is no single medicine, device, or procedure that helps control seizures for everyone. When I saw a pop-up in my Facebook feed to do a birthday fundraiser, it was the perfect opportunity for me to contribute to help find cures for epilepsy. 

Because of my music and the connections with others that I’ve made through performing and collaborating, I am fortunate to have wonderful and supportive social media followers. I was able to reach out for donations, and those amazing people came through in a big way! I feel grateful to be able to help raise money for such a great organization. 

A Note from the Epilepsy Foundation

Thank you, Kristen, for sharing your story with us and for fundraising for the Epilepsy Foundation. Your generosity, and your loved ones too, will go a long way toward helping us find cures for epilepsy, provide resources and support now, advocate for people with epilepsy and their families, and spread much-needed awareness. Learn why your gift matters.

If you have a story to share, please visit the forums on epilepsy.com.

Now more than ever, the Epilepsy Foundation needs your support. If you can give any amount, please consider making a donation at epilepsy.com/donate. If you would like to host a Facebook Fundraiser for any occasion, get started here.

Charity Navigator has awarded the Epilepsy Foundation four out of four stars. Learn about the Foundation’s finances here.

Authored By: 
Kristen B.
Authored Date: 
05/2020
Reviewed By: 
Liz Dueweke MPH
on: 
Monday, May 4, 2020