October 26, 2020

Darlene “Epilepsy is only a piece of the puzzle”

Meet Darlene, she has never let her Epilepsy define her. She deals with her condition with laughter and resilience. Read her story at Epsy.

Meet Darlene, she has never let her Epilepsy define her. She deals with her condition with laughter and resilience, "I get knocked down, I fall, but I always get back up again!". Read her story and find out how she deals with her condition every day!


About Darlene:

Hi, I’m Darlene! I’m 35 years old, and I live in Upstate New York. I love to spend my time walking, singing in American sign-language (my second language) and advocating at Government meetings. I am actually working towards starting my own business in advocating for those with disabilities, to break down barriers and improve lifestyles.

Darlene & Epilepsy:

My mother told me the first seizure I had was when I was only a few hours old. I’ve never known life without Epilepsy, I’ve had seizures my whole life. My specific seizure type is complex-partial with secondary generalization, and I have a VNS too. 

I was always picked on as a kid, and people called me names. I just remember when people pick on me, they like a response. If someone calls me stupid, I say ‘thank you very much, yes I am, Smart Talented Unique Person In Demand!’ Having epilepsy sucks sometimes, but it’s taught me how to deal with things in a strong way. 

Darlene & Epsy:

In the past, I used paper diaries, but I would always end up spilling coffee on them! I’ve used automated medicine boxes and other App’s too. They don’t seem to work as well as Epsy.

My favorite feature is the way I am able to log my medication. Epsy doesn’t just remind me to take my medication once, it will keep reminding me and I forget a lot less often now. Also, I feel accountable too as I track my medication compliance myself and I show it to my Doctor. 


Epilepsy & Society:

People are more understanding now, they see it differently. People are still afraid when they see me having a seizure. I’m not afraid though. Having Epilepsy means you can’t always do things in the way other people do them, but I have learnt to deal with this in my own way.


Darlene’s message to others living with epilepsy:

Epilepsy is only a piece of the puzzle; I do the same thing you do, just in a different way. Everybody deals with the condition in different ways, and that’s OK! It’s very emotional. I deal with my Epilepsy with laughter. I get knocked down, I fall, but I always get back up again! 

Talk to those around you, and your medical care team, and be honest with them and yourself. In the end, it helps you manage your condition in the best way for you.


Thanks so much Darlene for sharing your story, Epsy is on a mission to give the world a better way to live with epilepsy.