Epilepsy Advocate’s My Four Words Project

Posted on 19. Sep, 2012 by in Epilepsy, Mom - Parenting - Family

The “My Four Words” project was launched by Epilepsy Advocate and UCB earlier this year, but I didn’t participate until the other day when I received a reminder email. The project gives people who are living with epilepsy or have loved ones with the condition the opportunity to share their thoughts, feelings and experiences.

The catch? Right, you got it–your story has to be told with just four words. People have made beautiful posters and signs, many of which are featured here on the My Four Words Flickr photostream. My “My Four Words” sign is more of a note, but I feel that it accurately describes my adventures with epilepsy.

From WHY? …

After the first seizure, after the subsequent seizures, and after learning that I would most likely have to take medication for the rest of my life, I felt incredibly sorry for myself. I would look at friends or family members or people out in public that I didn’t even know and ask myself, “Why didn’t this happen to them? Why me?”

To WIN!

Now I realize that I’m actually one of the fortunate ones because my seizures have been under control for several years and I’m living a (mostly) normal life. I have a family, I have my independence back, and I’m able to earn a living doing something that I actually enjoy. Many people aren’t so lucky.

So as you can see, I’ve gone “From WHY? to WIN!

7 Responses to “Epilepsy Advocate’s My Four Words Project”

  1. Edgar Centeno 14 October 2012 at 9:16 am #

    Hi, my name is Edgar, I am from Chicago, and I have lived with epilepsy for some years now. It really makes me happy that there are people like you that really overcome something like epilepsy and make something of their lives.

    • Melissa 14 October 2012 at 9:58 pm #

      Hi Edgar,

      Thank you so much for leaving me a comment. I have been living with epilepsy since 2005. I’m very fortunate that things seem to be under control now. Hopefully they stay that way.

      Good luck to you!
      Melissa

  2. Spring Flowerchild 14 October 2012 at 12:28 pm #

    Yes, we are so fortunate. I have partial seizure and have had tonic clonics in the past when I was a child. I am grateful for the many years I’ve had of independence.There are many who suffer so much more and there so little awareness about this disorder. Thanks for sharing!

    • Melissa 14 October 2012 at 9:59 pm #

      Thank you! I had my first seizure while I was on vacation. We were out of state to visit my relatives. I woke up in a hospital bed with my dad’s aunt and uncle looking down at me. I had no idea where I was or what was going on! I am so lucky that things seem to be staying smooth now.

  3. LORRIE HOYLE 14 October 2012 at 8:21 pm #

    I WOULD MORE INFORMATION I HAVE HAD EPILEPSY FOR ALMOST 28 YRS.

  4. Melissa 14 October 2012 at 10:06 pm #

    Well, I am not a medical expert so please realize that, but I take Trileptal. It is manufactured by Novartis Pharmaceuticals. I was taken to the hospital in an ambulance after having my first seizures in 2005 because we did not know what was going on, and that is the medication that the doctors prescribed. My doctor has had to increase the dosage since then, but I have not had to take any add-on medications like many people do. I have to go for blood work every few months because it can cause problems in some people. I also cannot tolerate the generic version (oxcarbazepine) which was approved a few years after I was already taking it. I had a few very bad seizures when I tried the generic, so had to switch back.

  5. jennifer 14 March 2013 at 12:17 pm #

    (Your website is awesome, good job!) hi my name is jenn, I have epilepsy and am living with my boyfriend (during the day I am by myself)
    this is new to me so i am taking it slow but there are a few things that knowing someone in my situation has been through, so would you please reply, hope to hear from you soon!

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