This blog post comes much later than anticipated. I have experienced what every writer, in fact every computer owner dreads – a virus. Living with a computer doctor it took five days of countless operations. Yesterday saw a slow but positive recovery but only after intense surgery where the poor thing became practically skeletal.
Now back to good health, reflecting on the lead up to Purple Day it seemed to really hit a chord with a variety of you folks out there. The connection between the reader and the pictures and quotes was strong. With such positive feedback I considered the direction that I want to take this little blog. First of all I felt it time for an upgrade on its appearance so I hope you like its new sparkly layout.
Something I was inspired by was the idea of relaying other people’s experiences with the condition; after all, each journey is individual.
I contacted a number of people whose stories I had learned of and will post one each week. Living with it myself, although helpful in many aspects it is not mine alone that the readers can always relate to. The first piece I have chosen in this series is by Ann Eshaw.
Hi, my name is Ann, I’m 24 and I got diagnosed with epilepsy when I was 11. From that moment there were a few changes and I started a new journey. Let’s go.
One day at school I felt something strange and ran to the bathroom. By the time I was in the bathroom the strange feeling was over. I got home and told my parents about it, but I couldn’t quite explain the feeling I was having. A few doctor appointments and tests later the doctors figured it out: I have epilepsy. They even found the cause of my epilepsy, which doesn’t happen often. So in a way, I was blessed. The epileptic seizures were being caused by a tiny brain tumor – benign though, which means that it doesn’t grow. However, it is causing the seizures. To be more specific: simple partial seizures. A few months and a few more tests later the doctors decided to do a brain surgery to remove the brain tumor. We agreed. Let’s pause here for a minute.
Even though my life had changed a bit because of the discovery of this tiny thing (really tiny: as small as a dot) in my body, I didn’t feel any different. As I look back, I now realize that the support of friends and family made the difference. My friends didn’t treat me any different after they heard the news. Even though we were all about 11 years old, apparently we were wise enough to know that behavior is important. Because nothing changed in our friendship and because of the equal treatment I was receiving from the people around me, I didn’t feel different. The change didn’t affect me much. And press play again.
On April 27th 2001 I went into that operating room. There was no fear, I just couldn’t wait for it all to be over. A little strange, I know. But like I said before, support from family and friends can mean more than you think. Merely being there for someone. The only worry I remember having was that one side of my head needed to be shaved. Girl problems; we can exaggerate, am I right guys?
So I went into that operating room and a few hours later it was all over. Unfortunately, the brain surgery failed. The tumor is too deep and the risks were too high to continue the surgery. So they stopped. The possibility of being cured was a little more difficult than anticipated and thus we turned to treatment. I started taking medication to control the seizures. However, they were never completely controlled. How did this affect my life? Let’s fast forward to middle school.
I’m 13 years old and my mentor tells me to stand in front of the class and tell everyone that I have epilepsy. He wasn’t being a bully, there was a reason for this. I used to have seizures during class and had to go out of class all of a sudden without asking the teacher for permission. The students were wondering what that was all about. Why do I have that privilege? So I gave them the answer. That was probably one of the hardest things I’ve ever had to do in my life. I was horrified to do it. Ridiculous, I know. I’m just not the kind of person that shares everything with everyone. (So realize that sharing this is indeed a huge step.) Anyway, I stood in front of the class, I shared my story and got over it a few days later. Let’s fast forward again.
I’m 19 and I’m in university. I had changed the medication I was taking and my body had to adjust. In case you have no idea what the side effects might be, here are a few: being tired all the time, sometimes concentration problems, getting angry all of a sudden. Mainly being tired all the time to be honest. However, don’t let it get you down! Nothing is impossible. You might have to work a little harder than the rest, you might have to fail a few times before eventually succeeding, but in the end the feeling of accomplishment is all worth it. Trust me. It’s worth it. I finished my Bachelor without any delays and I’m now close to getting my Master’s Degree in Health Sciences.
What I’ve learned in the past 13 years is that as long as you don’t let it affect you or define you, you’ll be fine. Change is inevitable in life. Don’t let it get you – that will only cause more seizures as negative emotions are a trigger. This would also mean that you will be the cause of your own misery. The fear of the unknown is not something that only exists within you. A student who took a test has the fear of the unknown – fear whether he has passed the test or not. A mother whose child will go to school for the first time experiences fear of the unknown – fear of whether her child will survive on his own. These are all just a few simple examples, but I’m trying to explain to you that everyone experiences the fear of the unknown every now and then. So embrace it as it’s part of humanity.
I’ve also learned that you need a few people around you that will give you the support you need and that will treat you the same always. Let me stress the word “always”. If you meet new people and are planning to keep them in your life, try to explain to them what epilepsy is and what they should do in case you have a seizure in front of them. Basically, tell them what they can expect.
Finally, I’ve learned that nothing is impossible; you just have to put your mind to it and make it happen. It might take some effort, but really, which great things in life don’t need some effort to feel as great as they truly are when they’re accomplished?
Smile, have goals and live your life as any other human being on this planet. Nothing big has changed. Life is a continuous change. The only constant in life is change itself. So embrace it.
Ann has her own website and you’ll find the link is below. It is yet another glimpse into another method of advocating epilepsy.
and can be contacted at