Living at Full Volume with Epilepsy

This is a post written by a guest contributer to our blog. Sita runs the popular epilepsy-themed blog called Life at Full Volume. Below she shares her story about her experiences of living with epilepsy.

I have been diagnosed with Epilepsy since I was ten years old. As a child, 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 was in awe. At 18, 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. 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. My Seizures are definitely not still under control, and some days are tough with regards to injuries, both mental and physical.

I am proud of myself for acquiring my Bachelor’s of Social Work degree, and I have finally reached the point of accepting my Epilepsy for what it is. It’s not a curse. It’s not a life sentence. It’s a chronic illness and that’s it! Yeah, I know that the past couple of years have felt bleak at times, but now I know that I am so much stronger than I ever could have imagined. I have endured so many accidents, along with mental health problems I felt like I was just stuck in a life that revolved around this chronic condition. I felt completely and entirely defined by it and I was just sinking further and further into the quick sand with no way of getting out. Today though, I feel that I am standing stronger, with my head held high and I am completely and 100 percent proud of how far I’ve come. Tackling anxiety has been a huge feat (and I will admit, I do still struggle with it from time to time). For awhile I was angry, and sad that I wasn’t in the point of my life that I wanted to be. Why wasn’t I out there with my Master’s degree doing social work? Why was I still doing my undergraduate when the majority of my friends had already graduated and moved on with their lives? Why, why, WHY! Well, this is MY path and this is where I am supposed to be. Who cares that I graduated a bit later. It’s not like there was someone sitting there timing how long it took me to complete my undergraduate degree. It was only me who was judging myself for how “successful” I was. All of my internalized thoughts of what it meant to be successful were dragging me down and were not of any use to my well being or success. Plus, it’s not like anyone really cared! It didn’t matter! All of my friends were there cheering me on when I graduated, and they all saw it as a huge accomplishment! It was like it was their success too! What an amazing feeling.

I may have Epilepsy, but it sure as hell doesn’t have me.