Dedication: To my love, You made me appreciate everything about me especially Epilepsy. I still ask myself, how can a man like you with a beautiful heart stay with someone like me. I was epileptic. I still have depression, anxiety and mood swings. I love you. You are the biggest blessing I ever received from our saviour Jesus Christ. I pray all the ladies will find a man like you. Someone who they can hold hands and skip with in the middle of the shop. Someone who can say I love you in front of anyone. Lastly someone who'll be there during the best and worst day of their lives.
My name is Sydney and I am almost 25. I have four sisters who are free from allergies and disabilities. I was born in the Philippines and named Sydney because my father got his visa when I was born, to come to Sydney, Australia. My father always tells me that I am his lucky charm.
At the age of three, I was in a coma for three days because of Meningitis. My family took me to three hospitals and the staff at those three hospitals told my family that only a miracle could save me. I guess three is not my lucky number.
However, my family and I experienced a miracle. I woke up and I was completely fine. Doctors told my family that in ten years they will see the side effects of my illness. School in the Philippines was easy and I stayed at the top of the class until Grade Four.
In April 2004, I, my mother and four sisters flew here in Sydney to live. In June 2014, I woke up in the school’s First Aid room with different clothing including underwear. The teacher didn’t explain anything about what had happened. I was confused and questioned myself, asking, ‘Why do I have different clothing and underwear? Why am I here in the First Aid room?’
I walked out of the room and I saw a wet mark where I was standing. My General Practitioner referred me to a Neurologist at Westmead Children’s Hospital. I was diagnosed with Left Temporal Lobe Epilepsy. I was prescribed Epilem, Tegretol and Frisium tablets. For almost a year I was seizure free.
When I entered High School, I made a couple of friends but never shared the fact that I had Epilepsy with anyone because I was afraid. But it happened again. I had different clothing including underwear again. I went back to Science class and everyone was looking at me while talking. It was traumatising. I was afraid of going to school the next day but I had to. It happened AGAIN. I lost a couple of “friends”. The story spread around the school and I was labelled as the girl who wet her pants. I was in so much pain. Countless nights of crying and countless days of having a fake smile on my lips.
My seizures continued to be uncontrolled, and I tried different medications. I started asking God, ‘Why me? How come my sisters don’t have allergies or disabilities? It’s unfair’. For years I continued to compare myself to my sisters. I used to be at the top of the class but now I was at the bottom. It turned into anxiety and depression. I would say that I was okay but deep inside I was not. I didn’t want people to look down on me. No one fully understood me.
I only opened up about my Epilepsy to my high school real friends but I never reminded them of Science class. I was ashamed.
At the age of fifteen, I was told not to get pregnant because my medicine will affect my child. I was young and never thought about it. But I knew I had to do something.
At the age of sixteen and a half I became a senior high student. A man I had a crush on was in Filipino class for one day. He was popular, tall, dark, handsome and a kickboxer. He asked a classmate how to say ‘You are beautiful’ and he told me ‘Maganda ka’. I felt myself blush. After class, we started talking. One of the first questions he asked me was, ‘Is it true you wet your pants?’ My heart stopped beating but I knew I had to tell him the truth. I told him and he said, ‘It’s okay. My aunty had Epilepsy but she is now Epilepsy-free.’ My hope of being Epilepsy-free became stronger and I realised how lucky I was to be alive and to be in Australia. We broke up, but I’m glad I had met him. He made me strong.
At the age of eighteen, I started dating a man I knew since 2005. No epilepsy secrets. He made me stronger. I had a seizure and was rushed to the hospital one day. I told my family not to tell him because I knew he would leave work. He got angry and said, ‘I can find another job but I can never find another you’. I guess that’s sweeter than I love you. He always reminded me to take my medicines even while working. With him, I felt normal, I felt beautiful before, during and after seizures, I felt so much love and I learnt how to laugh and joke after seizures. I never felt ashamed of my seizures in front of him.
I started seeing a psychologist and I shared everything that I had kept inside me. I wasn’t crazy. I was in pain. I needed someone to pull out the hundreds of needles piercing my heart. I shook, cried, mumbled and felt the room spinning. She said, ‘It’s okay’. It helped me but still not one hundred percent.
Last year on the 20th of November 2017, I had a brain surgery by one of the best neurosurgeons in New South Wales, Australia. IT WAS THE MOST EXCITING AND HAPPIEST DAY OF MY LIFE! My surgeon told me the risks and side effects, but I just smiled. I was willing to take the risk. I was exhausted. I knew it will be healthier and safer for my future child and that’s important. I prayed and told God, ‘I’m giving up my Epilepsy, anxieties and depression. This is nothing compared to what you’ve been through to save me. Thank you’.
In December 20 2017, I had a check-up with my surgeon. I told him I hadn’t had Epileptic or non-Epileptic seizures since the surgery. Guess what he said? ‘You’re epilepsy free!’ I cried in front of everyone. I called my family and even my boyfriend’s grandma and mum. They all cried as well.
I now have two friends with Epilepsy. They understand everything I say and feel. I also joined My Epilepsy Team, a world where I am me. Sharing my experience to everyone who understand and I me completely me.
In 4th March 2018, I shared my story at my church. I didn’t expect so many people to wipe their eyes with tissues, especially guys. GCJ then arranged a Mental Health program to help our church family. God used me as a tool to help and strenghten others. Thank you Lord for using me.
Epilepsy isn’t so bad because it has made me strong. I found my real friends, family and a great boyfriend. If I could go back in time, I would still choose Epilepsy. It’s a big part of me. I’m not ashamed of it. If anyone’s got Epilepsy, anxiety or depression, speak to me. I will listen and I’ll understand you. You can email me at firstname.lastname@example.org Thanks.