My advice to others with epilepsy or any other condition that limits their daily activities is to learn how to adapt. It is more helpful to accept your limitations and find a new way to work with them. Connect to local, social media, or your university advocacy groups, and if you can’t find one, create one. It is critical to find a support group that understands you and what you need, no matter how big or small, and this includes your health care team. With new research being done each and every day, I’m hopeful that there will be new rescue medications for when I do have a seizure at school, at home, and in public that will be able to treat my seizure clusters more quickly and with more ease.
I had the pleasure of interviewing Eva Wadzinski, a college student from Chicago, IL studying psychology and human development. On the outside, Eva looks like any other college student, but beyond the academic and social stresses of school, Eva also suffers from epilepsy and seizure clusters, a type of seizure emergency, where she has multiple seizures over a number of hours or days. Despite it all, Eva is determined to enjoy all life has to offer and is passionate about sharing her story and connecting with others who have epilepsy or know someone who does, to raise awareness and help educate about the condition.
Thank you so much for doing this with us Eva! What is your “backstory”?
I was born in Green Bay, WI and raised in Chicago, IL with my mother, Michelle, and two older siblings, Alex and Kelsey. My father died when I was 7, so my mom filled in the role as both the mother and the father. I had a very typical upbringing until I was 7-years old, when my father suddenly died, and then being diagnosed with epilepsy changed my life and my family’s life forever. Frequent trips to hospitals and doctor visits became the new norm for my family. My doctors confirmed I suffered from epilepsy and seizure clusters.
At one point, I had to leave high school because I couldn’t get through a day without having 30 seizures before lunch. I ended up switching high schools four times growing up and have enrolled in two different universities. As you can imagine, having this condition has greatly impacted my mental health, social life and academic career.
Can you share the story of how you became ill, and what you did to not let it stop you?
When I was 13-years old, I had my first seizure and my second seizure was the following March, just a few months later, while playing a boardgame with my family. I fell off the chair, started convulsing, and turned blue in the face. Two seizures are a strong telling you are likely to have epilepsy. Following these episodes, I was diagnosed with epilepsy and later seizure clusters, a type of seizure emergency that impacts an estimated 150,000 people in the U.S. with uncontrolled epilepsy. When I’m having a seizure, it’s like someone is taking over my mind. I lose control and I can’t talk or understand what people are saying. Sometimes I’ll involuntarily scream or laugh loudly; other times my seizures can be more convulsive, and I’ll rock or move my hands, arms and legs. I’m never sure how many I’ll have and when they will come about, but I can have upwards of 10 seizures in one brief period of time and on average 5–8 seizures per day.
Over the years, I’ve had two brain surgeries and tried multiple treatments to manage my condition. I’m now a junior in college, studying psychology and human development, and am committed to not letting my epilepsy and seizure clusters hold me back. Despite all of my challenges, I try to find the humor in my situation, give back to the epilepsy community and do all that I can to enjoy life with my greatest support system, my family, but I also have days when humor cannot be found and I need to rest.
Can you tell us about the accomplishments you have been able to make despite your disability/illness?
As a current college student, I still have seizure clusters often, but I’m so proud of where I am today. I enjoy taking classes and meeting new people and am excited about where these new experiences and connections will take me. I volunteer at Luries Children to gain experience in the psychiatric unit, as well as the Epilepsy Foundation of Greater Chicago to continue to gain knowledge of my disease, while helping newly diagnosed families. My hope is I will be able to create a support group for young adults with epilepsy.
My own personal goal is to have people know and understand what epilepsy is, the negative and positive — no sugar coating, only honesty. When the Epilepsy Foundation of Greater Chicago calls, I answer and give any extra support they need. I’m the first to support however I can. It also makes me feel good to know that my family has my back and wants to do their part to help those with seizure clusters. For example, my mom works for UCB, a global biopharmaceutical company that’s committed to providing treatments for others like me. She also educates schools, workplaces, and healthcare facilities through the Epilepsy Foudation of Greater Chicago. My siblings also know how to support people with epilepsy and have learned so much about my disease.
I hope that my story inspires others who face ongoing challenges living with seizure clusters or other conditions that may greatly impact their day to day lives.
What advice would you give to other people who have disabilities/limitations?
My advice to others with epilepsy or any other condition that limits their daily activities is to learn how to adapt. It is more helpful to accept your limitations and find a new way to work with them. Connect to local, social media, or your university advocacy groups, and if you can’t find one, create one. It is critical to find a support group that understands you and what you need, no matter how big or small, and this includes your health care team.
With new research being done each and every day, I’m hopeful that there will be new rescue medications for when I do have a seizure at school, at home, and in public that will be able to treat my seizure clusters more quickly and with more ease.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I wouldn’t be where I am today without the support of my family and, in particular, without my mom’s unbelievable commitment to my health journey. She is the one that has taught me to feel vulnerable and authentic, and to not feel ashamed of my diagnosis.
As a family, we are dedicated to the epilepsy community in a variety of ways; and for me, that’s helping to share my story to educate others and shed light on the fact that epilepsy isn’t just what you see on TV.
How have you used your success to bring goodness to the world?
I have used my success by encouraging and guiding other people with epilepsy to strive where they can, ask for help when they need to, and remember it’s valid to cry. Many people cannot physically see epilepsy, and it’s my mission to bring it front in center, scream it from the roof tops. They have a voice and a story to share with anyone who is ready to listen and support.
Can you share “5 things I wish people understood/knew about people with physical limitations” and why.
Five key things that stand out to me specifically are:
- It’s important to be sensitive to their limitations, while at the same time treating them with respect.
- Accept everything about the person’s journey and their condition, without judgement or questioning, to ensure they feel understood and supported.
- Keep a positive outlook whenever possible, cry when you need to, continue to spread awareness, educate others, and with hope help the community find new solutions for disease management.
- Not everyone will get it — and that’s okay.
- There is more to epilepsy than just physical limitations — there are psychological and social limitations too.
Can you please give us your favorite “Life Lesson Quote”?
Have fun, make things silly — Grace Helbig
Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see it.
I would choose to meet with Grace Helbig. I met her a month ago briefly at a comedy show in Chicago. She is an author, content creator, actress, and has two well-known podcasts. She does her own thing — showing her vulnerability and honesty. I read her book, Grace & Style, and the first section of the book explains her challenges with an eating disorder. It was when I was reading the book that I started accepting and stepping into this unknown path of recovery that I was completely terrified of, as I too suffered from an eating disorder. Reading her story made it more attainable — “If she can do it, I can too.” It meant a lot to me to know that someone out there was struggling with this too. I finally got to meet her and told her everything in just a matter of minutes. Following our conversation, she sent me a lengthy direct message, which I so appreciated.
That said, instead of breakfast or lunch, I would love to be on her podcast and talk about how epilepsy affects mental health!