JAN PARR's Story

Epilepsy Everyday

My daughter was diagnosed with Epilepsy 31 years ago when she was 10 years old. I was stunned with that diagnosis as I know very little about Epilepsy. There were so many questions in my mind plus the fear of knowing the answers to the questions. I gathered my strength and asked the Doctor what I should do. He gave me a very sad list of what my daughter are not allowed to do which in a nutshell she needs supervision in everything most of which are things that normal kids do. Knowing these crushed me but my focus was on 10 years old daughter.

My daughter’s was a very bright and active student, but Epilepsy took a toll on her. She can’t even attend a full week of school because she had as many as 15 episodes per day! Dr. Sabri told me to be prepared of this and I made sure she studied at home at her own pace. It takes time to stabilize after a seizure and stress will only make her worst.

Not a day passed by that I am not worried for her life with all the “what if she gets an episode” constantly playing in my mind whenever she is not within my sight. Though every time she has her seizure it broke my heart, I never give up trying to make her life as normal as possible. It was not easy as she gets her seizures very frequent, but she was a fighter and being the close knit family that we are, we decided to face this battle together with her.

I allowed her to join a school excursion, but I made sure her teachers are aware of her condition. True enough she had 2 episodes there. I took her to the movies and she had an episode before half time. We went shopping and she gets her episodes at the mall. I allowed her to have a sleepover at her cousins house and she had her episode there too. I was scared but I took the risk for her to experience all these, as despite the episodes, she had part of the experience like any other child.

Her working life with Epilepsy was also colorful where she had episodes in the LRT on her first day to office, at her workplace, during her business trips and meetings as well.

But, there was also her few distinctions for SPM, a Law Degree and a Masters in Law. There are also her work experiences that not even those with no Epilepsy managed to do, able to get a job in a reputable GLC and many more.

We work as a team with Dr. Sabri trying new combination of medicines. Some works, some don’t and some just gave horrible side effects. At 16 years old, we finally found Epilim and it helped her to get her life! She got less episodes and she was able to swim, sky diving, snorkeling, hiking and was able to be adventurous and even went on her own abroad to study Law. It changed all our life to see her so active and reaching her ambitions and goals in life.

Even with all the positive change, I still monitor her timely daily medicine intake as Epilepsy tends to make her to be very forgetful.

There are a lot of patients who recovered from Epilepsy, but with Epilepsy for 31 years, the very best is she can control this disease through strong and reliable medications. she can definitely live a healthy, normal and challenging life if she is able to control the episodes. I constantly would read lots of articles, cases and new findings from all over the world on Epilepsy with hope that maybe someday she can be fully cured.

My advice to those parents who has epileptic children is not to treat them like disabled child but a child with a disease like any other. It is not supernatural or a curse but is treatable with medication. I guide my daughter to face her life as any other normal children. And most importantly my family and I are never ashamed of her condition despite people would stare at us whenever she gets her episodes. We held our heads high and we gave her no chance to feel inadequate or a disabled person.

It is important not to shut them out from normal life and all the activities that normal people do just because of EPILEPSY. As parents, family or caregivers, you have to help to build their self-confidence and accept EPILEPSY as part of their life but its not the END OF THEIR LIFE. It is truly God sent if we are able to bond with a very understanding and innovative Doctors. It works both ways and truly a team effort, hence both parties must have patient and persistent.

Epilepsy was never a hindrance in my daughter’s life. Many that she achieved in life even a normal person may not be able to achieve. I am very proud of my daughter that she fought hard mentally to overcome the effects of Epilepsy and she was always prepared to face it in any given situation. Of course others may think my daughter is not perfect 100% but to me I am always grateful and thankful she’s my Epileptic daughter and to me she’s the best daughter in the world!

Don’t give up on them folks and you’ll be pleasantly surprise on how much they can achieve in their life. It is also our duty to be very supportive and encourage them to face life positively and achieve their goals in life. Malaysia should focus on Epilepsy awareness which eventually will cease the negative stigma. Epilepsy does not stop anyone from becoming doctors, lawyers or any other successful positions. Please help these patients not to be shut out and be treated as retarded for life and become very dependable on others to continue living!

By Jan Parr Abdul

March 2021