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Sandra’s Story: I have epilepsy, epilepsy doesn’t have me

june 2011 001Sandra’s personal epilepsy story was submitted to Living Well With Epilepsy to paint a picture of someone who has epilepsy, but epilepsy doesn’t have her.

Sandra’s Story

I was diagnosed with Petit Mal Epilepsy or Absence Epilepsy, whichever is the preferred term now, when I was 8 years old. I’ll be 40 in 6 months. I started having Grand Mal Seizures October 2010, when I had 2 on the same day, then I didn’t have any until February 10, 2013 when I had one and then again Thanksgiving 2013 when I had 2. Here’s my story from the time I was diagnosed to now. I don’t “feel” different from anyone else. In fact, most people would say, my life is better than most. I guess, I’m lucky in that respect.

College

My parents didn’t treat me any different because of epilepsy. They treated it and pushed me to live my life to the fullest. I was a normal kid in school who did well academically and excelled in high school sports. I went on to college where I earned two bachelor degrees and a master’s. During college, I did the normal college stuff, studied, stayed up way too late and did my fair share of partying.

Running

After college, I started my career as a school teacher, which I am still currently doing. In the meantime, I travelled. Oh, boy, have I travelled. I also became a runner in my 30’s, which I NEVER imagined myself becoming, EVER. I have done a marathon, about a dozen half marathons, countless 5k’s. The first thing I always ask my neurologist when I have had a grand mal seizure is when can I start running again.

Dating and Driving

I have dated and been in a long term relationship. When I “feel” like I have epilepsy is when my driving privileges are taken away after having a grand mal seizure, when I have to stay at my parents’ house for a month or two because I live alone and they get concerned with me living alone, when for a month or two I have doctors appointment like crazy and I’m getting poked and prodded. Then, slowly, life settles and it’s back to MY life. The driving privileges get restored, I go back to living on my own, I go back to work and I’m back to a quicker pace when running.

Life goes on

I realize that I am lucky because I have read stories of people and how they struggle with epilepsy. I ask myself, should I be struggling? Should I be worried all the time? But, then I stop and tell myself, NO! This is MY life and MY epilepsy story.

I have epilepsy, epilepsy doesn’t have me.

Sometimes, I just have some bumps and potholes on the road of life, the grand mal seizures, that have to be repaired by the road crew, my neurologist and other doctors, but life, as I have always known, it goes on.

To submit your story visit: https://livingwellwithepilepsy.com/share-your-epilepsy-experience

4 Responses

  1. Pearl
    | Reply

    Thanks for the glimpse. I don’t know too much about epilepsy. I adopted petit mal and grand mal for panic attacks.

  2. Rich Snow
    | Reply

    Sandra, I was so glad to read your story. It sounds like your life with epilepsy has been more like mine than that of anyone else I’ve ever heard about. The story of my life with epilepsy is on this same site site at
    https://livingwellwithepilepsy.com/2014/01/anonymous-story-good-life-despite-epilepsy.html

    I would live to hear from you via email. Jessica K Smith has my email address. Thanks for posting your story. It certainly sounds like you’ve made the most of your life so far. Congratulations!

    Rich Snow.

  3. Glenda Estrada
    | Reply

    Hi Sandra. Thanks for sharing your story. My 8-year-old daughter has epilepsy and my goal is to raise her to have your type of positive outlook towards her disorder. For her to grow up and live her life to the fullest, regardless. Glad to read that you have been doing well. glenda

  4. Vickie Roy
    | Reply

    My family tried to make my life normal. But the schools I went to sure didn’t. They made my life a living hell. I’ve had epilepsy since birth. 3 different types of seizures uncontrolled by medications.
    Finally in my late 20’s I met someone at a support group meeting that could make a difference. He was an associate professor of neurology from Dartmouth College. He is what you call an epileptologist. ( neurologist specializing in the field of epilepsy). I talked to the current neurologist I was seeing at the time. Told him what the other Dr from Dartmouth suggested. He wouldn’t hear of it. So I decided to get a second opinion.
    I started seeing the Dr at Dartmouth. Its made a world of difference. He went over my records and started tests to see if I’d be a candidate for surgery

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