Fighting Epilepsy With Positivity

Epilepsy is a neurological condition that could happen to anyone, anywhere and at any time of their lives.

Characterised by sudden, recurrent and unprovoked seizures, some sufferers may experience symptoms within their first year of life, whilst others may fall victim to the condition at a much later stage.

Regardless of onset, epileptic seizures are extremely unpredictable and can dramatically impact patient’s day-to-day life, relationships, and even their safety .

According to the World Health Organization (WHO), there are approximately 50 million people suffering from epilepsy, 80% of which originate from developing countries like Malaysia.

To mark this year’s Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide, we spoke to one individual who invites others to assess their understanding of epilepsy, and stresses the role of positivity in changing the lives of epilepsy patients.

A different kind of life

Ahmad Ali, 43, had his first seizure when he was just a baby.

“I had a fever when I was really young, and while I was receiving treatment, I had my first seizure.

“My parents were worried, of course, but thankfully, I seemed to recover,” he said.

“This marked the beginning of the first stage of epilepsy in my life. Between the ages of eight and 13 years old, the seizures began to occur more frequently, each lasting about five minutes.

“The doctors described them as ‘grand mal seizures’ (seizures characterised by a loss of consciousness and violent muscle contractions) and I remember having to sleep after each attack for three to five hours.

“My parents were worried. Being the youngest in the family meant that they were even more protective over me.

“They were afraid I would injure myself if I had another attack, and I was not allowed to be involved in any outdoor activities like swimming or cycling.

“With all these restrictions growing up, it would have been easy for me to shy away from others, but even then, I was determined to live my life normally. All it took was for my family and I to be positive.

“The second stage of my epilepsy was between the ages of 13 and 19 years old, when I began consulting with my current doctor, almost 30 years ago.

“I was treated with medication and my condition improved, with the attacks becoming more mild and controllable, and my brain felt less heavy.

“I felt that the medicines were working.

“When I was growing up, I never stopped asking questions about my disease, and my family supported me in learning all about my condition.

“I would ask my doctor questions about the medications I was taking and over the years we have developed an open and transparent relationship, which has helped me to better understand my condition.

“Today, I am delighted to be able to share my personal achievements with my doctor.

“The third stage of my epilepsy began when I was finally diagnosed with left temporal lobe epilepsy at the age of 20.

“However, with the help of medication, my doctor, and support from my family, my condition improved for the better.

“Now, I can predict and prepare myself for an attack. Because of this, I see my doctor once in six months as compared to once every one or two months in the past.”

It never stopped me

Despite suffering from epilepsy, Ahmad never let his condition be an obstacle.

Instead, he worked hard to excel in his studies, achieving top grades in secondary school examinations, before going on to university and eventually obtaining a Master’s Degree in Educational Psychology in just 15 months.

“I knew how much my parents had sacrificed to keep me safe and that motivated me to do my best and make them proud.

“My self-esteem improved significantly, and I began to see my epilepsy as something I, and others, could learn from,” he said.

In addition to currently studying for his PhD in Educational Psychology, Ahmad has worked at several local universities and colleges, both as a lecturer and a counsellor.

As part of his current role, he teaches his students about epilepsy and the common misconceptions that surround the condition.

“Many of my students were not aware of this disease, so I decided to teach them about it.

“However, I never revealed to them that I was suffering from that condition.

“Using my experience, I could explain to them about the disease and how an epilepsy patient would feel, developing activities to help enhance their awareness.

“I was really proud when one day, I asked my students to demonstrate the different types of epilepsy and they were able to do so successfully, showing understanding and sensitivity of the condition, its symptoms and its challenges.”

Change the perception

While there are increasing efforts across Malaysia to raise awareness of epilepsy and support for those who suffer from the condition, Ahmad feels that there are still common myths and misconceptions surrounding epilepsy that need to be addressed and dispelled.

Even today, outdated beliefs relating sufferers of epilepsy to mental illness, spiritual possession or black magic persist.

“Awareness surrounding epilepsy has certainly improved, but we need to challenge long-standing stigmas in order to build the confidence of those suffering from the condition.

“I encourage NGOs and corporations to develop practical support and materials, which govern positive thinking, to help transform the national perception of epilepsy.”

When asked if he had any advice for patients who may be struggling with their condition, Ahmad said: “I would advise patients, especially the young ones, to follow three simple steps: “First, think positively and believe that you can continue living your life normally.

“Secondly, change your perception of epilepsy – it can be managed with the right mindset and treatment. Thirdly, work hard to build your confidence level and develop your life for the better.”