Exclusive interview: About Epilepsy in Her Own Words
- IWB Post
- November 19, 2014
November 17th marks the World Epilepsy Day. It is a kind of neurological condition characterized by epileptic seizures. In epilepsy, seizures tend to recur. About 1% of people worldwide (65 million) have epilepsy. Sadly, there are few misconceptions our society holds about epilepsy.
To clear all the stigmas we reached out to Paiker Haq, a 22 yr old Jaipur girl, who has a history of epilepsy. On discussion, we explored the myths and truths about this medical condition.
JWB – Tell us about epilepsy in your own words.
Paiker – It’s just any other medical condition. For me, it happens when I wake up – especially when I get up from deep sleep, or if someone wakes me up unexpectedly. It happened in 2004 for the first time when I was in the 7th standard – and has become a part of my life now. You faint, your body starts shaking, sometimes the mouth starts foaming as well. When you wake up, you feel daisy, all energy has been drained out, and it stays for a couple of days. The frequency and the cause differs from person to person. In fact, in more than 85% cases, the cause of epilepsy is unknown. I can sort of control/prevent it by getting enough sleep and having my medicines on time. However, it’s a lot worse for others, people sometimes get a seizure any time. As far as I know it can be avoided, if you take your medications on time and follow a proper routine. But of course, it’s not as easy as it sounds, your body becomes very weak, so it often leads to lethargy and some deficiencies which lead to other symptoms. So, one has to be very careful all the time.
JWB – Tell us about importance of the family support.
Paiker – Family Support is very very crucial. People treat it as a taboo and look at you as if something’s wrong with you. But that’s not the case, you know? I lead a perfectly normal life, do everything any other person would – and it wouldn’t have been possible, had my parents not treated me as normal. My parents have never stopped me from taking part in any activity or doing certain things or going out anywhere. I know a few people whose parents don’t let them go out much or do a few things because they’re scared something might happen to them in ‘public’. So, that’s sad. It all begins at home. If your parents/your family behave differently with, you yourself start feeling different.
JWB – What strengths you have developed because of epilepsy?
Paiker – A lot!
- It made me realize that NOTHING can stop you from doing what you want to do. As a kid I was often told not to play for long or not to go somewhere alone, but I would take it up as a challenge; and made sure I did what I had to. After a while people around me realized that I’m just as normal as they are. It’s all in the head.
- I follow a proper strict routine, which I think is VERY good for health, with epilepsy or no epilepsy.
- It’s made me tolerant to people. I’ve stopped caring about what they say, ‘cause, honestly, this made me realize that they actually go on saying whatever comes to their mind. It’s funny how ignorant people can be. I don’t let them bother me anymore.
JWB – What societal stereotypes attached with epilepsy you want to break?
Paiker – That Epilepsy is NOT a mental condition, it’s a MEDICAL condition. Just a neurological symptom! Your nerve signals break/go haywire sometimes, and your brain loses control over your body for a few seconds (hence, the fainting and the shaking). That is all that happens! Can happen to anyone, anytime. Also, people are very secretive about this. I wish we could change that. You should let people around you know, so that they know how to help and to be careful.
JWB – Do you find gender-bias attitude towards epilepsy?
Paiker – No, not really. Not that I know of. Thanks to my family, again. Although, a few aunties do keep telling me ‘Kisi ko batana mat. Rishte milnein mein problem hogi.’ Hahaha! Couldn’t care less. I’d rather not marry at all.
JWB – We really love your attitude. Inform us about the 1st aid required in such cases.
- If you think someone’s going to fall, catch hold of them and lay them down carefully.
- Make sure there is nothing in the vicinity that can hurt them. For eg, when someone faints and falls, make sure there are no pointy objects etc.
- Make them lie on their side. So, if their mouth’s foaming, they don’t choke on it.
- DO NOT put anything in their mouth. People say stupid things like put a spoon in the person’s mouth while they have an attack or make them smell a sock. Please NEVER do such things. They can actually harm the other person.
- Don’t force them to eat/drink anything until they are fully conscious.
- As soon as they gain consciousness, give them their pills.
- Call the doctor.
JWB – Do you find medical aid in Jaipur hospitals satisfying?
Paiker – Yes, absolutely! I’ve been rushed to the emergency a couple of times and the doctors have been great. No problem there. I think we have great health facilities in Jaipur. I’m undergoing treatment from Dr. ChandraMohan Sharma, he heads Neurology in SMS. He’s great! In fact, he was the one who made me realize that it’s nothing to be scared of or be tensed about.
JWB – Is there any particular health regime that you follow?
Paiker – I just have to stick to my routine. I make sure I get enough sleep (7-8 hrs min). Take my medicines on time. I eat healthy. A lot of milk and curd. Calcium is important for your nervous system. Especially, as a girl. And, I meditate. That again, is very good for your nervous system. Really helps!
JWB – Share your encouraging message with our women readers.
Paiker – Just don’t let anyone or anything come in the way of what you want! If you genuinely want something, go get it. Don’t care about what people say. They keep talking all the time. Do what you have to. Some of the greatest people had this condition – Katie Hopkins, Flo-Jo, Susan Boyle, Vladimir Lenin, Li’l Wayne, Charles Dickens, Martin Kemp to name a few and nothing stopped them. It’s nothing to be ashamed of. Could happen to anyone… just like common cold. If you think it’s a weakness, turn it into your strength, and you will see how life smiles at you!