syarah's Story

My Epilepsy Journey

‘Why am I flying? I can't see anything.’

At that moment, everything went pitch black.

A few minutes later, I could feel the brightness of the sun piercing into my eyes as I opened it slowly. My weak body was lying on the car seat, wondering how I even got there. I rubbed my head and felt that I had my hijab on; what a relief.

My mother was giving me an anxious look, but I replied with a smile, realizing something had happened because my head was hurting like hell. She said that we were going to the hospital and asked if I felt okay. I only had the energy to nod to the question. I was 15 and it was just a day before one of the big examinations in Malaysia, PMR. I just had my first tonic-clonic seizure after 12 years living without one. My first seizure ever was when I was three years old, where I had a high-grade fever and ended up with a tonic-clonic seizure. Just like back then, I was rushed to the hospital again.

“You need to be admitted so we can do a thorough checkup to see if there is something wrong,” the doctor briefed me.

I let out a big sigh, "I have to sit for PMR starting tomorrow. I don’t think I can afford to spend my time in a ward."

“If that’s the case, we’re going to take your blood sample and in about a week, you need to come here again to do an MRI, okay?”

“Alright, doctor.”

A few weeks later, my mother and I had to attend an appointment with a neuromedical specialist for the MRI result.

“I’m sorry to inform you but it seems like your daughter has a scar on her frontal lobe brain,” the doctor informed us.

“What does that mean?”, my mother asked curiously.

“It means that she is going to live with epilepsy her whole life and it is a miracle if she recovers from it.”

“Are you sure, doctor?”

“Yes, ma’am, I am sure but please don’t be too worried. She's most probably going to be fine with the help of medication,” the doctor reassured us.

I felt like my whole life flashed before my eyes, my dreams, my plans, my adventurous self, what am I going to do with these? Should I forget everything? Do I need to put it all aside?

I was a good student and was good in almost everything that I do. I was ambitious, adventurous, and very determined. Knowing I would never be able to recover made me think very hard. Since I was in kindergarten, I have wanted to become a doctor. A medical doctor. And I know, if I were to become a doctor, I will have to fulfill the houseman requirement and be on-call, which will be difficult for me because I will not get enough sleep. To make it worse, not getting enough sleep is one of my biggest triggers. Consequently, I stopped having ambitions since then.

When people asked me, what my dream was when I was younger, I would enthusiastically reply, "To become a doctor." But, from then on, my response would be, "I don't know yet. I'll just go with the flow. Wherever life takes me, I'll be there."

Yes, I was struggling, but I believe my mother was having a tougher time. It must be difficult for her to accept the fact that her daughter will be on medication for the rest of her life due to a condition she has.

After PMR, I was transferred to another school and enrolled in the science stream. Indeed, I failed a few subjects in Form 4. After being diagnosed, I had multiple episodes of different types of seizures during my high school years. My most recent tonic-clonic seizure occurred the day before I had to sit for an English paper during SPM. But, thanks to the Almighty God, I successfully obtained 10 A's and 1 B for my SPM. When the results were announced, I recall bawling my eyes out. I was the second top scorer in my grade, which was a complete surprise to me. When I received the results, the first thought that came to mind was 'Why? Why me? I thought my efforts were not good enough. Is this something I truly deserve?'.

My confidence level had plummeted because of those failures, seizures, and poor attendance at school. I have always felt unworthy. Because of my missing attendance, the school's headmaster once called me to the front of my class and yelled at me in front of the whole class. She shouted and asked what was wrong with me, and after explaining my condition, I cried in the exact same spot. She continued to shout and said, “Why won’t you tell me earlier that you have epilepsy?! What a waste of time! Go sit.”

Today, I am a 23-year-old lady, with a degree in Dietetics. I just finished my degree in July 2020 and will be graduating in June 2021. I am also currently working as a research assistant at School of Health Sciences, Universiti Sains Malaysia. I am still on medication, but I only experience partial seizures, aura, and migraines, which are bearable for me. Of course, my life will never be the same as other normal people, but I believe that my condition does not define me. I am still the same Syarah who was and still is ambitious, adventurous, and determined.

By Nur Syarah binti Mohamad Ros

March 2021