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Sita’s Story: Epilepsy at University

sitagaiaSita’s personal epilepsy story was submitted to Living Well With Epilepsy to remind teens with epilepsy they are not alone.

I have been diagnosed as a person with Epilepsy for twelve years.  When I was a kid, I was pretty much the poster child of someone who lived with well-controlled seizures. My seizures only occurred about twice a year, and even then they were in my sleep and the worst that would happen is that I would wake up with a bloody tongue.

Felt Ordinary

I never felt affected by this medical condition; I just felt like I was an ordinary kid who took medication twice a day to help control these mysterious seizures that only presented themselves on a rare occasion. My neurologist was in awe–I had plans to graduate from high school and I would then head off across the country to start university–she seemed to think this was a big deal!

At the time I just kind of shrugged my shoulders. Wasn’t everyone expected to graduate high school and go to university? I mean, my parents never said that I had to go to university, but it was something that I wanted, and I didn’t know why it was such a big deal.

University Life

Adjusting to university life was a bit of a struggle, as I tried to balance the stress of work and becoming more independent. The seizures still occurred from time to time, but I was never really in serious danger, as they usually always occurred while I was in bed or in my room. Well, except for the time that I did a face plant because I had a seizure while running. Other than that, the ride was pretty smooth.

Things got Complicated

January 2012, things got out of control. I had a couple of minor seizures, but as the months kept coming more seizures came too. It got to the point where I feared going to school in the event that I would have a seizure and smack my face on the floor. Even worse than the physical harm to my body was the shame and embarrassment I felt.

Anxiety Took Hold

If you have ever witnessed a seizure, you will know that they look a little bizarre. I started to become very worried, and ultimately became very depressed.  At the time I wouldn’t have told you that my anxiety was up the wazoo and I was so far  in the depression hole that I couldn’t find a ladder–I was pretty much unaware of both. I didn’t want to burden anyone. Plus, I figured that I was just a tired out student. I mean, no one wants to get out of bed on a Monday morning, and sometimes it’s sometimes hard to focus in lectures. Also, students are busy, right? We don’t always have time to eat properly, or at all, which is what happened to me as I found myself less hungry for food, and less hungry for the things that used to bring me joy.

Depression and Epilepsy

I was pretty much in extreme denial. I just saw depression as something that happened to other people. Oh boy, was I wrong. The interesting thing about depression and epilepsy is that they work together in a happy little cycle. The more seizures I had, the more depressed I became, and the continued depression would cause more seizures. I was afraid to go anywhere on my own, even to meet a friend for coffee nearby. The seizures were so unpredictable that they happened at unexpected times, which left me little to no time to get to a safe place.

This left me feeling trapped in my apartment.  I hated to make plans with my friends in case I had to bail at the last moment, or I was afraid of having a seizure while I was out.  I started to  yearn for the days where I could leave my apartment by myself and just go for a walk without any worries. It sounds so trivial, but when I was unable to go anywhere by myself without extreme anxiety, it seemed like a distant life that was no longer mine.

Me Again

Slowly and painfully, things started to get better. The seizures started to calm down a bit, and the depression started to ease off. I still remember how liberated I felt when I was finally feeling well enough to meet my friend for brunch. I walked along in the beautiful sunshine, smile plastered on my face, ipod blasting in my ears. It was amazing. I was finally back in my element! I was me again! I was out into the world, no longer cooped up in my little apartment.

Appreciate the Little Things

This experience taught me a very valuable lesson. Never take anything for granted. Even though being able to meet up with people and enjoy time with  friends sounds so trivial, it is essential for ones well-being. I can’t be alone all the time and I need my friends to help maintain the richness of my life.

I think this experience has taught me that I need to live in the moment, which I am working on.  This is a key component of mindfulness, which is the idea that you are fully engaged in the moment that you are in, and every moment is ‘now’. I find it hard to be in the ‘now’, but part of me believes that the universe was trying to teach me a lesson when all of this was happening. I can’t skip over parts of my life. I have to live them, no matter what is happening. Additionally, many of these past few months have been very low-key for me, just to improve my health, so I have learned to find meaning in this ‘non-doing’. This means finding meaning in what I’m doing, even if it appears to be non-productive.

Things are improving and I feel like my old self again. I find that telling this story to people  is like ripping off a band-aid. The more I do it, the easier it becomes, and the easier it is to move on and gather strength, regardless of the situation.

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Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

6 Responses

  1. Wendy Jones
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    Thanks for sharing this, Sita. Us people with 'disabilities' often don't realize that they're a trade-off for gifts, which more often than not are those of a healer. Thing is, in indigenous times, we would have started our healer's training when very young and always have guidance and teachers. It was not considered a problem, we had an equal place in the circle.

    Sometimes , when trauma occurred, then matters did become problamatic, but there were always other healers to help us along. Western medicine, while it has it's pitfalls and good things (like medications) , doesn't have as healthy an attitude. Consider yourself an apprenctice healer and a teacher will come around , that's the joy of being with the universe :D.

    • Sita Gaia
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      Thanks for your comment, Wendy. I really like the idea of a disability not being considered a problem. My epilepsy has been a bit of a problem this year, but I'm hoping that I'm able to see it in a new light.

      I definitely feel more like a healer and a teacher! I hope that my story will reach many people, and will impact a few people along the way.

  2. Anonymous
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    Hi Sita, thanks for sharing you experiences so openly and honestly. You sound as though you have gained maturity far beyond your years through your health situation. From this written piece is appears you are on the path of helping others find their way through life's challenges with awareness and gratitude. And your written style is also beautiful and I look forward to reading more from you soon.

    • Sita Gaia
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      Hi Anonymous,

      Thank you so much for your comment…it means so much to me. I am trying to share my story with people so others with epilepsy feel less stigmatized and are also able to talk about their story. Here is the link to my own blog, I usually updated once or twice a week 🙂 http://sitagaia.wordpress.com/

  3. Living Well With Epilepsy
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    To Wendy and Anonymous,
    I've sent Sita an email encouraging her to visit her page so she can respond to your comments. Thank you so much for the feedback.Comments like yours are so important to anyone considering sharing their story.

    Best,
    Jessica

  4. Rich Snow
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    Awesome! I feel so glad for you for gettin through all the hassle that the epilepsy has put you through. Actually, I didn’t go through much of the depression – just a lot frustration at not driving. Still, I’ve been through college, grad school, marriage and a career. From all that you say about your current attitude, I know you can do whatever. In your lifetime, they’ll probably stop your seizures altogether. I hope so. Congrats!