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Leila’s Ideas: Speaking about stigma at the Mardi Gras Gala

Celebrating Mardi Gras with lots of confetti!
Celebrating Mardi Gras (and epilepsy) with lots of confetti!

On February 9th, I had the honor of speaking at the Epilepsy Foundation of Western/Central Pennsylvania‘s (EFWCP) annual Mardi Gras Gala.  It was a beautiful night with over 600 people in attendance.  Green, purple, and gold balloons overtook the ceiling, live music rang throughout the room, and we all danced throughout the night.  Most importantly, we all worked together to support the epilepsy community and the EFWCP, and fight stigma.

Speaking about stigma

My part in this was simple but important: share my story with the hundreds of people in the crowd…easy, right?!  It was daunting, but I did it!  I spoke from the heart and left the room in silence until the end.  I received so many genuinely kind comments afterwards; I really feel like I made a difference.  A number of people wondered whether I was nervous or not.  I was a tiny bit, but I realized that if I didn’t share my struggles and triumphs, no one would hear them. These guests wouldn’t know what living with epilepsy really felt like.  It can be difficult to explain a seizure, medication side effects, and the psychological effects epilepsy has on those who have it.

Not as easy as it seems

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No matter how easy or difficult this speech was to make, it was important.  Sometimes, in my fight to eliminate stigma and live a “normal” life, I create the perception that my life is easy and free from struggle.  Even though my epilepsy is well controlled, I still face challenges.  My migraines still bombard me and disrupt my life.  I have an incredibly poor memory (the other day, I asked the same question 3 times in only a couple of hours).  My medications leave me exhausted, regardless of the amount of sleep I get; due to this, I sometimes can’t do all of the activities my friends do. To the untrained eye, people wouldn’t know these problems; my epilepsy does not appear to interfere with my life.

I don’t want people to attach stigma to me, or anyone else with seizures.  We need to be treated as individuals.  Just as we all have different likes and abilities, epilepsy impacts our lives in different ways.  Speaking to all those people helped them realize the life people with epilepsy lead–the good and the bad parts.  It helped me realize something too: it’s okay to admit where I have trouble.  It doesn’t take away from me as a person.

Your turn

What are the ways epilepsy impacts your life?  What do you wish you could tell people about your experiences?  Let me know in the comments below!

 

2 Responses

  1. Erin
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    I too have struggled at times with epilepsy. I have had epilepsy for 17 years now. I have had struggles. I now think of epilepsy as a blessing. I know for some that might sound strange, have a seizure as a blessing. Not exactly what I mean. If I didn’t have epilepsy I wouldn’t walk every morning, I wouldn’t take the bus, I wouldn’t take the train, or ever use uber(lol). I slow down open my eyes to everyone and everything around me, and that I believe is a true blessing. I get to see the world and expose my family to more things. I am now hitting my 9 months seizure free which has never happened, this might be the year we get to see more in the world!

    • Leila Zorzie
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      Congratulations on hitting 9 months seizure free! How exciting!! I hope you share with us what your year has in store for you! I understand your perspective about epilepsy being a blessing. It is difficult for others to understand that, but no one can if they don’t have it. Having a diagnosis has certainly provided obstacles for me, but it has also presented wonderful opportunities and unique experiences. It sounds like you have had the same! I’m so glad you view it positively. I think that’s the key to living well!