There was no "moment" where I realized I wasn't alone. It was a process. It's taken years and years. When I would tell people why I was upset after a seizure, that I felt like a freak, of course they would tell me, "You are not a freak, Sara." Okay. Yes, deep down, I knew that. But that wasn't exactly comforting. I wanted to talk it out with someone who knew what I was going through. After a while, I kept a lot of my feelings in. I knew exactly one person who had epilepsy. Just one. My sister found a website, Epilepsy Foundation (www.epilepsyfoundation.ning.com), and there are some forums on there. That was the first step of me being able to talk to someone else going through a similar situation. I was on that website everyday, answering people's questions, and asking my own. It brought some peace knowing that I was able to help people with their issues, and also having some of my questions answered. I am not on that site as much anymore, but I still use it.
In 2014, I made a big decision. I was going to get the Vagal Nerve Stimulator. I was going to go into surgery and get it implanted inside my chest and neck. There was going to be a lead (wire) wrapped around my Vagus Nerve that would send waves of stimulation to my brain. The VNS had been something I had vaguely heard of from my neurologist, as there was a poster hanging in one of the examination rooms. She told me what it does and that sort of thing. As I am sure you can imagine, the idea completely freaked me out. I said no, and that was that. No changing my mind. It wasn't a serious thought, anyway. We were just talking about it, but at the time I thought I was being forced to consider it. One day, maybe a few months later, my mom and I took a walk. I remember the exact spot where I decided I wanted to get the VNS. We were walking by our bank, and I told my mom that I was tired of seizures. Just forever exhausted from having them all the time. Every two weeks. Sometimes one. I told her that I wanted to talk to my neurologist about it, and that I was willing to get it. My mom supported me, which made me feel good. When I was at my next appointment with my neurologist, I told her about my decision. She told me I was a good candidate for it, being that I don't respond to medications completely, and that my seizures are the ideal size for it. She talked to the neurosurgeon who would be performing the surgery, and we got the date set.
My parents were going to go to Cambodia a few weeks before the date of my surgery, and my mom was a bit antsy, asking me if I wanted her to stay for the surgery. "I don't have to go! How about I just stay with you." She was nervous. I told her everything would be fine, and that I had my sister to take me and take care of me after. I also had my other siblings.
I got my first laptop right after my parents left. I wanted to get it before the surgery, so that I would have it to use while I was recovering. After I got the computer, a few days before the surgery I decided to make a video for my rarely used YouTube channel. All that was on it were a couple Spongebob videos, some of me and my friend singing, and other random videos. I had been researching the VNS, and there were only a couple of videos on it. Both of them were of some girl's post-surgery. They didn't provide much information, so I decided to make one of my own. It was about three days before, and I used my poor-quality laptop camera to make a video. I talked about the VNS, and how I was going to have the surgery soon. I told the viewers (if any), that I would make a follow-up video after the surgery, so they could see what happened. That, right there, is how I started my way of helping people.
I had been making YouTube videos for quite a while. I made a new video for every step of the VNS process. From when I was still loopy after the surgery, to getting my VNS turned on, etc. I continued with the videos through my first year of college, talking about my medications and the hardships that I was going through with epilepsy. I believe it was in June of 2015 when I decided to make a separate email for YouTube, so the people who watched my videos could have someone to talk to if they wanted. Soon after, I actually got an email from someone! It was so exciting! I was able to talk to a person going through my situation! I began to get more emails, all from different people, talking about their feelings and how they were doing. I have made a lot of friends from those people emailing me! I have a close friend in particular who I have been emailing for over a year. She has helped me so much with being able to talk things out. I love being able to discuss our lives and current issues. I have some other friends that I frequently email as well.
In August of 2015, I started this blog. I never thought anybody would actually read it, aside from my family. However, after a while it took off! Now I have people reading it who I don't even know! I love making videos, but I love having a blog to write on as well. It is so nice to be able to write out what I am thinking and feeling, and knowing that there are people who enjoy reading it.
Many people have told me in the past that I have helped them feel so much better about epilepsy, and how they don't feel alone anymore. They appreciate the information I give them, and the fact that I openly share my experiences. However, you all need to know that I have gained so much from you. I have learned about things that I had no clue about before. I learn more about epilepsy every day, and I know that I am not alone in this world at all. There is no need for comparison, but it's amazing how different, yet the same, people with epilepsy are. I so greatly appreciate all of the support you all have given me. All of the comments and help, they have given me strength. Thank you!
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| Day before surgery |
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| After the surgery |
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| After bandages removed |
