“I have done so well this semester! This last speech is going to leave everyone transfixed!” Thrill took over me as I entered the classroom where we were taught about public speaking. When it was my turn, I smugly got up and began delivering my speech. I was doing fine, until the electrical storm hit my mind. Confusion and déjà vu took over pride and alertness. After regaining a little bit of consciousness, I noticed fragments of what was happening: my professor succumbing to fear, my peers being ushered out of the classroom, my inability to communicate. I wanted them to know that it was just an epileptic seizure. Please do not be scared. Please do not call an ambulance. It will pass. But I had no control over any cell of my body. I had achieved my goal. I had actually left everyone transfixed.
The next day, I vowed not to wallow in self-pity. Nonetheless, I could not help feeling like a fire engine, red and hot. I knew I could not skip my class; so off I went, accompanied by fake courage. Thankfully, I was greeted by smiling gazes and murmurs of concern. I told them I had epilepsy and asked the professor to fill in the voids for me. Seeing that I was comfortable talking about my medical condition in front of the class, she did so. Apparently, halfway through the speech, I had paused and my lips had started twitching gently. In a panic, the professor had called 911.
Epilepsy is a neurological disorder characterised by recurrent seizures that range from mild to severe. The seizures happen due to a sudden surge of electrical activity in the brain which temporarily disturbs the messaging systems between the brain cells. Now, I am no neurologist. But I am someone who has had epilepsy for 14 years. When it comes to my seizures, there is no fixed pattern and it all depends on how stressed I am. It could be one seizure in nine months or one seizure in two months.
I have tried to educate myself by discussing the medical condition with neurologists in the three countries I have lived in - Saudi Arabia, Pakistan and the United States. I have watched informative videos and read articles. I have talked to other people with epilepsy. We might all have been diagnosed with the same disorder, but the types of seizures, causes, obstacles, and treatments differ. For example, some people get along well with antiepileptic drugs, while others choose brain surgery.
Many people believe that this is not a medical condition at all. They think that a person is just ‘acting weird’ to gain attention or sympathy. I have met people who have come to the conclusion that epilepsy is due to a jinn or a witch at work. According to them, visiting a faith healer proves to be more beneficial than going to see a neurologist. I can understand why people have these thoughts. Firstly, they do not know what epilepsy is or how to deal with it. Secondly, witnessing a seizure is overwhelming. It can frighten the onlookers, and often no one knows what to do.
If you are someone who has epilepsy, besides taking your usual medications, there are other bitter pills to swallow. Although there are different kinds of seizures, most of the time there are blanks to be filled because seizures affect not only your behaviour and movements, but also your consciousness. So many unanswered questions whirl around in your mind after you come back to your senses. What did I do and who saw me? What were the observers thinking? Was any part of my body exposed? That is not all. You might also be welcomed by a number of reactions like bizarre stares, sincere concern, and fear. So, how do you deal with all of this?
Accept the situation: Do not sweep your medical condition under the rug. Once diagnosed, accept the fact that you have epilepsy. This is a hard task. The disorder is stigmatised as it is, and dehumanising practices like making someone going through a seizure smell shoes makes it unbearable to acknowledge your situation. But you should also know that there is treatment and therapy out there.
Satisfy your curiosity: You have never heard of epilepsy before. You do not know how you are going to carry on with your life knowing you have a disorder. Will you be a misfit forever? No matter how many questions you have, there are answers to all of them. Do your research. Observe yourself and your actions. What triggers your seizures? Common triggers include fatigue, an empty stomach, and lack of sleep. Can your seizures be decreased? Besides seeking treatment, there are a number of ways that could help change your health and attitude for the better. Some people might feel energetic if they change their diets, while for others, meditation might prove to be something of a tonic. When it comes to epilepsy, there is a lot of experimentation to see what works best for you.
Educate others: Epilepsy is a common neurological condition, and yet it may be difficult to untangle myths from realities. Tell your family and friends about seizure management. Here is what they can do if you have a seizure:
• Clear the area so that injury can be prevented.
• Place yourself on your side to keep airway clear.
• Do not put anything in your mouth.
• Let the seizure run its course and do not restrain it.
• Time the length of the seizure and observe whether you lost consciousness and a description of your body movements.
• Develop a good support system. Beware! There are going to be grey days, with not even a single ray of hope in sight. What can help you feel unscrambled then? Sharing your sentiments with individuals you trust. These could be parents, friends, teachers, etc.
• Be inspired! When did I start being comfortable with the fact that my epilepsy is treatable, but probably not curable? A few years back, a neurologist in Pakistan told me that Abdul Sattar Edhi, the legendary philanthropist who founded the Edhi Foundation, had epilepsy and yet he had achieved so much by serving humanity. That was the moment I decided to stop beating around the bush. There is also our very own Nadia Jamil, who has been vocal about her medical condition and how she deals with it. Such a passionate actor! I could never have guessed what she was going through behind the scenes. Lewis Carroll, Socrates and Prince; all had epilepsy and yet they managed to make their marks on the world.
The struggles that come with epilepsy can be tiring to handle. Although some people have an aura (a warning sensation experienced before a seizure), many do not. You might not know when you are going to have a seizure; while sipping coffee, giving a presentation, or watching a movie. But time and experience are excellent teachers. They have taught me that there is more to a person than just being an epileptic. In my case, I chose teaching as my profession although I know getting a seizure in front of students can arouse fear within them. However, I am at a point where I can deal with the situation. After all these years of learning to accept facts, here is what I can tell you. Epileptics can excel in life and be employed. They can get married and have children. To put it simply, they can lead ordinary lives, or even extraordinary ones.