This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
Happy Epilepsy Awareness month! I had a specific plan for my post this month. Life then smacked me in the face and reminded me that plans don’t always work out. Sometimes, you have to enjoy the ride with no plan. You see, earlier this year, my grandfather was diagnosed with cancer. Recently, he has started having seizures.
I have a wide knowledge of seizures. I’ve had them. I’ve woken up in tears in a postictal state. I’ve spent weekends lying on the couch, missed events, and continue to battle my brain and my medications to live a normal life. I’ve watched seizures happen and felt the terror of knowing I can’t do anything to stop it. But when it’s my family, it’s different. Listening to my grandpa recall the fear he has during his aura is haunting. Knowing the exact frustration he feels when he can’t control his body saddens me. Commiserating with him, while it bonds us, is painful.
You see, I can write about Epilepsy Stigma. I can speak to my experiences and advocate for others. I can help others who are dealing with the complex thoughts and emotions that epilepsy brings. However, I have never had to do those things for immediate members of my family. I’ve never been so connected to someone who knows exactly what seizures are like. While I’ve always wished that I had someone so close who understood, I never would have willed it to happen. Now that my grandpa is that person, to be honest, it’s painful.
I’m slowly learning how to manage my knowledge of seizures, my emotions about them and my grandpa, and how to best help him. It’s been therapeutic for both of us to have someone to complain to—he now understands the struggle that I have dealt with for most of my life and is thankful to have someone who can empathize. I’m realizing that my knowledge of seizures doesn’t replace the fear and uncertainty that they bring.
To all those who care for those of us with seizures: thank you. Even if you don’t fully understand our experiences, your support of our physical, emotional, and mental health is immeasurably helpful. I understand it’s probably scary and confusing at times. That’s okay. Whether you’ve been a support for 10 months or 10 years, it can always be scary. Your willingness to always continue is a blessing.
To all of those who have seizures and Epilepsy: make sure to thank your support systems. I realize that I probably don’t do that enough. It takes a lot to understand what is going on in my brain and then support efforts to fix it. Be patient with them. We may not realize how scary our seizures look from the outside. Regardless of the awareness we raise, seizures can always bring a certain amount of nerves with them. Educating people around us is important, but we also must understand that all the information in the world doesn’t replace our emotions…especially when it involves those we love the most.
I’m so thankful to be able to spend time with my grandfather in this unique way. I’m also grateful to have the opportunity for a new perspective: that of a patient support, not just a patient. I more fully understand what life looks like for those who have aided me for so long and who aid millions of individuals with Epilepsy around the world. Let’s all remember to raise awareness for Epilepsy, the seizures it brings, and the emotions it evokes.
Thanks for following the Epilepsy Blog Relay™ all month and spreading Epilepsy Awareness. Did you miss a post? For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.