Epilepsy Blog Relay: Chantal writes a letter to epilepsy

This story is part of the Epilepsy Blog Relay™.

Chantal’s Story

Epilepsy in everday life, I think we all know it’s not always that easy. But you can make a difference in the perspective on how you look at being diagnosed with Epilepsy. And whether or not you let Epilepsy control your life.

Couple of months ago I wrote another blog, because I noticed some of my followers are from overseas.  I’m from The Netherlands.

As you might have read I have a VNS, for almost a year now. The settings of my VNS were modified multiple times in the last couple of months. It’s still not really working for me yet, so my Epilepsy-counselor and I are still looking for the settings that will hopefully give the results we want!

If we find a setting that works, it will change my life! I still have 10-15 seizures a day. For those who are familiar with VNS, you know that it comes with a magnet. I have not had the chance to try it out as often as I want, to be sure it really works with the Tonic-Clonic seizures. But the times I have used it, it seemed to reduce the seizure a bit. Which is a good thing!

A letter to my epilepsy

I think it’s important to make ‘fun’ of Epilepsy. So my blogs contain humor, sarcasm and self-mockery. It sure helped me to accept all of this. I often write ‘letters’ to my Epilepsy, so I choose to do the same for this Epilepsy Blog Relay.

Dear Epilepsy,

You blew away several certainties in life. I am fighting this battle now for almost nineteen years. You force me deal with you every single day. But I won’t put the blame on you, you are just being you. Doing what you do best. But you, dear Epilepsy, should not take me for granted. Accepting you the way you behave, you should be thanking me for the way I treat you and deal with you.

I won’t lie to you that I sometimes really hate you. You have a lot of power, but it’s a waste of time. Because I not giving up to find a good combination with medication and the VNS that I got implanted specially for you, close to my heart. I will keep you company. And if I could I would wrap my arms around you. Instead of being in my brain with your electric superpowers, I would put you under my skin to keep you warm.

You have these sudden moves, but they don’t scare me anymore. So welcome to my life, accepting you for what you do.

It took me a while, but I have found a way to cope with your flaws. I embrassed you. I know that you are here to stay. But you, dear Epilepsy, never will have a hold on me.

With love,
Chantal

Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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