Heather’s Story
Breakthrough seizures, have you heard of them? I haven’t, nor did I think I would need to learn about them, until I had one a couple months ago. Basically, a breakthrough seizure is when someone with an epilepsy diagnosis experiences a seizure after not having one for a long time.
For me, that long time, has been 18 years. This breakthrough (sudden, dramatic, and important discovery or development) seizure blindsided me, reopening a chapter of my life I thought was closed. All the fear, anger, and frustration I felt 20 some years ago when I was first diagnosed with epilepsy is now back and here for me to deal with.
I’m learning though that its ok to feel this way. I read other’s stories, and I feel less alone in mine. Every time I share my story with someone, we both learn something new. This is why I want to share my story here today - I want to keep learning from others and be there for others to learn from me. Every story shared brings greater awareness to what an epilepsy diagnosis can look and feel like, bringing comfort and knowledge to each other and the community around us.
I was diagnosed with Juvenile Epilepsy at 19 and between the ages of 19 and 25 I experienced absence seizures and a total of 4 tonic clonic seizures. I faced all the challenges that come with an epilepsy diagnosis – losing your license, the trial and error of multiple meds, the tests, the fear, the constant dependence on others, and the setback you feel when you’re doing so good, then you have another seizure - back to square one you go with no real answers as to why.
Fast forward a few years, the rest of my 20’s no seizures. All of my 30’s seizure free. Every year that passed without a seizure, that dreadful story in my head of “oh no what if I have another seizure” got quieter and quieter. At some point, I even re-wrote the story to “I grew out of my epilepsy, I no longer have to worry about this”. I continued to take my antiepileptic medication but I definitely lived life like my epilepsy diagnosis didn’t exist.
Then this past Christmas, the breakthrough seizure happened. I woke up on the bathroom floor, two paramedics, and my family staring at me, so much hurt and fear on their faces, and through my confusion and exhaustion I heard those dreaded words “Heather you had seizure”. I didn’t believe it, this makes no sense…how can this be happening after all this time has passed.
It’s been 18 years and the challenges I faced when I first started having seizures are the same today. There have been no “breakthroughs” in available treatments or knowledge of my epilepsy diagnosis. There was nothing new to talk about- no concrete reasons for why this seizure happened or if there would be more. This lack of knowledge creates this unease that now looms over me, and my family, wondering what will I be doing if it happens again, will I be safe, will others be safe. This fear that we (the greater epilepsy community) carry around with us everyday, is why we need to find a cure.
Despite all this though, everyday I am thankful and will continue living life to the fullest. I am very fortunate that I am still able to do all the things I love to do by just taking a few extra precautions. Learning to ask for help and accepting that I can’t always do things on my own schedule teaches me to be patient and adaptable. I thank my mom, family, friends, and greater community for sharing their time to help me do all the things I want to do, allowing me to remain connected to family, friends, and the community. I am forever grateful and promise to try everyday to pay it forward, helping others as you have helped me.
Thank you for taking the time to read my story. I am donating today towards finding a cure, and hope that if you are able to, you do as well.
Heather💕
The courage of those living with epilepsy,
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