Tuning In: When the Body Says ENOUGH!

I have been diagnosed with Epilepsy for twelve years. (for those of you who don’t know, Epilepsy is a brain disorder that causes you to have seizures). 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. 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 (a doctor who deals with epilepsy and other brain disorder conditions) was in awe. I was going to be graduating from high school soon and I was heading 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.

Fresh blackberries, what a delicious treat!

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.

January of 2012 is when 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 had about the seizures. 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. Even then, I am good at putting on a good face when I have to. 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.

Cold day at the beach. My own photography.

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.

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 to this day 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.

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.
Also, I’ve learned that, despite this year, I have it pretty good. Other people who live with epilepsy are unable to work, go to school, or are behind in their schooling. Some people even need to wear head protection all the time to protect them if they fall. Four years later, and I finally see why my neurologist was in awe of my accomplishments.

If there’s anything that i believe in, it’s that I believe that everything happens for a reason. (To a certain extent at least). 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.

This story might have been a little heavy, but things are improving and I feel like my old self again.

I find that telling this story to people is like ripping off a bandaid. The more I do it, the easier it becomes, and the easier it is to move on and gather strength, regardless of the situation. xox

After making it to the lookout on a hike!

For more information about epilepsy, visit http://www.epilepsy.com.
For more information on Mindfulness, check out the book Full Catastrophe Living by Jon Kabat-Zinn, PhD.

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4 thoughts on “Tuning In: When the Body Says ENOUGH!”

  1. Hey Sita, it’s been a long time since we’ve been in touch. I came across this post when you linked it on facebook; man I am pretty blown away by your openness, honesty, and boldness in sharing yourself (and what are often-stigmatized experiences) with the world.

    Being mindful, and living in the moment is something I have pushed myself to do but struggle with everyday. You are right, however: it is immensely rewarding and freeing when we’re able to live that way. I admire your gratefulness for those small – but tremendously important – things in life such as love, friends, and connection. Thanks for the reminder; it is easy to forget these days. What does that say eh?

    Thanks for being amazing, and good luck as you look towards what’s next. Even in high school I always admired your positivity, and reading this adds serious weight to that! I hope we get to reconnect next time we’re both in the same place (Vancouver? Christmas-time?)

    All the best,
    Amir

    1. Hey Amir,

      Yeah I know hey it has been ages since we’ve been in touch! I kinda knew vaguely what you have been up to through West Van friends and through my friend/roommate, as you are both involved in EWB! (Small world, hey?)

      I don’t even know where to begin with your positive reactions to my blog post, but let me tell you this: every comment means so much to me that I can hardly find the words to give it justice. I am really excited about this blog because it is re-connecting me with people that I haven’t talked to in awhile! I find that sharing these stories have re-energized me, and it is so encouraging to get such positive feedback and that people are interested in my experiences. Also, let’s face it, it’s a very cathartic way of dealing with things in the past.

      Yes hang outs at Christmas time are definitely a must! I am in Vancouver at the moment actually, but according to my statistics there have been two people in Uganda who checked out my blog! Are you in Uganda??

      I look forward to reconnecting at Christmas, and if you ever find yourself going through Ottawa this fall, give me a shout!

      Cheers,
      Sita

      1. Hey hey,

        Yup I am in Uganda! Going to be working here until at least 2014 with EWB; so no Ottawa trips, but I come back for Christmas so lets make that happen ;).

        If you see any old-time high school people while you’re in Vancouver, send them my best!

        Amir

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