SANDY's Story

Me, as a patient, I really feel down the first time that my neuro told me I have epilepsy. It is like a big rock fell on me.

I feel I was fallIng into a deep sea and couldn't breathe. I am very sad and feel I want to give up but my mind told me I couldn't give up, if I give up all will be gone. I search from neuro to neuro, just like keep on swimming in the middle of the sea. I couldn't help myself but I really hope someone could help me. In the middle of the sea, I keep on swimming and looking for boat passing by that might help me. At last I get to Prof Raymond Azman Ali, he confirmed that I have epilepsy. On that time my mind told me no need to swim, it is fate, at last I float in the middle of the sea. Then my mind flashed back to the episode how my neuro encouraged me, I told myself to keep on swimming you might get to the end, so I keep on swimming. I suddenly saw a bunch of epilepsy people (PEM FB). I swim to them and ask for suggestion and if they can help me out with their stories.

After swimming to them I keep on asking question and I feel I found a family. At last I can survive in the middle of the sea. I feel I am swimming with Prof Lim, Prof Raymond Azman Ali and my neuro. We swim happily and I learn a lot about epilepsy.

On 3 Feb 2021, a shark come and swim at me (it means having 2 times of tonic clonic). I found out that when everytime I get the signal, it's gonna happen in no time. The signal is someting your brain sending out, is like a very strong signal, like a bunch of wave and electricity need to pass to the brain. I will feel suddenly thumb jerking, feel a bunch of things happen. I was curious, wish to get some answer from the people at sea (PEM FB group) so I swim and ask. At last I found out they said it is an aura or a signal, told me I have to take care. I suddenly feel great swimming with them, I told myself I will survive with them even though I'm in the middle of the sea. My seizure always happen at night during sleeping time. On the morning after the seizure I will find out I am naked, my clothes taken off and a wound at my right palm. I am afraid that I will die in the middle of the night. Everybody encourage me to sleep with my mum, but I didn't want to because we must learn how to survive with epilepsy and not depend on others. I have anxiety disorder and migraine too but I never give up. I wish I can dive into the sea and look the other people's world because I know I will forget many things day by day.

I always have blankstares, blackouts and many more, these things can make me suffer but they will not make me give up. Blackout is the most annoying one, it's just like someone dim the light and you suddenly fall and bang your head. Blankstares, you'll be talking and suddenly you become unresponsive and ask "What? Har? Can you repeat? But these two will happen very fast and will end fast. My tonic clonic, "Fuuuyoor!" 45 minutes I seizured! Then my neuro told me before seizure, 1st part, I will be fumbling with my shirt and then blackout, second part is the tonic clonic, last part after tonic clonic, I will become "flickering" and the "picking" starts, sometimes I will bite things too, and after all this I will sleep for the whole day.

We all live with "sharks", epilepsy is a "shark", we are all afraid of it. My family said I am the most happiest person. People always see my happy ways, and when everytime I told them I live with "sharks" (epilepsy), they will say I am joking. I have a very curious mind, everytime my curious mind happen I will ring my neuro up. Now I start to swim with a bunch of epilepsy people and neuro, I feel more safe.

My brain is starting to shrink due to epilepsy, so many things I have forgot, I even have slurred speech. I have forgot many things but I never will forgot PEM FB group. I hope all epilepsy people who have to bear with "sharks" one day will not make the "sharks" attack so much . We can let the "sharks" know who the "shark's owners" are and don't attack us. We can tame the "sharks".

I really want to go diving into a deep sea and look at other people's worlds, look at other people's dives. I feel empty, I told myself if I can tame the "sharks" I'm the number one winner.

By Sandy Wong Yoke Ching

March 2021