Cerita Epilepsi : Cerita Saya Sebagai Penyandang Epilepsi

 My story as an epileptic

by dhilah » Wed Mar 30, 2011 6:26 pm

Saya menyandang epilepsi sejak 10 tahun. Hal itu diawali dengan hilangnya kontrol kesadaran. Teman sekolah sering mengejek saya bahwa saya seperti bayi yaitu sering kehilangan kontrol kesadaran tanpa mengerti akan situasi.  Saat saya cerita pada ibu saya, dia membawa saya ke GP terlebih dahulu yang mencurigai saya mengidap epilepsi. Lalu dia mengirim saya ke seorang neurologis. Setelah beberapa kali test, ternyata benar saya mengidap epilepsi. Tonic Clonic tepatnya.



Jadilah saya penyandang epilepsi dan untuk beberapa waktu ke depan serangan terhadap saya tidak berhenti. Banyak peristiwa terjadi. Saya pernah mendapat serangan di toilet. Selama serangan sering secara tidak sengaja kepala saya terantuk tembok. Saya pernah kehilangan gigi saya karena terantuk "basin" dari kamar mandi. Gigi saya patah.

Saya sangat patah semangat dan tidak ingin melanjutkan hidup saya. Pernah saya punya ide untuk melakukan bunuh diri. Semakin dewasa, serangan terhadap saya semakin sering.

Saya sangat bersyukur karena memiliki teman-teman yang sangat mendukung saya saat saya di SMA. Pernah suatu kali, saya kejang di sekolah dan ini membuat teman-teman saya kaget, namun sejak itu mereka menemani saya kemana pun saya pergi, bahkan saat saya harus ke toilet saat sedang ada pelajaran di kelas. Mereka tidak pernah meninggalkan saya sendiri.

Saya masuk ke Universitas dan sekarang saya sudah lulus. Persiapan masuk ke Universitas itulah yang sangat berat, saya saat itu mengatur diri saya agar tidak stress dan tidak kurang tidur, karena kalau kedua hal itu dilanggar, maka besar kemungkinan saya akan kejang. Namun meskipun demikian, meskipun demikian menurut neurologis, meskipun kedua hal itu sudah diatur, bila datang "blue moon" atau istilahnya "masanya" serangan juga bisa terjadi. Untuk yang penting mengatur terlebih dahulu, masalah hasil bagaimana Tuhan.

Memang sulit sebagai penyandang epilepsi. Perusahaan di Singapura takut menerima penyandang epilepsi. Saya juga sering takut menghadapi masyarakat. Saya sering dinasihati agar menyerahkan segalanya kepada Tuhan karena Dialah yang tahu segalanya yang terbaik untuk diri kita. Saya sering berharap dan berdoa kepadaNy agar diberikan yang terbaik.

(terjemahan bebas, sumber : www.purpleday.org.

Yayasan Epilepsi Indonesia


========================================================

I had epilepsy since I was 10 years old. It started off as blank stares and involuntary loss of bladder control. Schoolmates often mock me for being such a baby by losing my bladder control without understanding my situations. When I told my mum what happened, she brought me to a GP first who then suspected I have epilepsy and transfer me to a neurologist. After several EEG test, it was confirmed that Im diagnosed with Epilepsy. Tonic Clonic to be precise. I was on Epilem for a few years but my seizures did not stop. I've had one too many episodes in the toilet. During the seizures, I would accidentally knock my head against the wall and sometimes I might lose my teeth because I knocked onto a basin or the showers. I was demoralized and didnt want to continue with my life. I have suicidal thoughts then. As I grow older, my epilepsy became very frequent. There was once I had it during high school. My classmates were shocked but they were very supportive. They started to accompany me wherever I go (even to the toilet during lessons). They make sure I was not alone. I am thankful to have such friends and up till today (I am already 26) even after I have graduated from high school, they still continue to be supportive. I managed to get into University. That is when frequent attacks happened. I realize that I cannot be too stressed. Usually it happens when my exams are drawing near. I realize too that if I do not have enough sleep, I would have epilepsy attack. There was once I burn the midnight oil and the next day I had an epilepsy attack. It was the worse. I woke up with the paramedic surrounding me and blood was all over the place. Broken glasses can be seen as well. Apparently, when I had the attack, I rammed through a glass panel and it cut my face leaving an obvious scar up till today. I had to go for steroids injection after that as keloids starts to appear.There were many times when I had my epileptic attack outside and I always ended up in the hospital for 24 hours observation. Since I frequently fall down during my epileptic attack, I now have herniated disc and with that comes sciatica pain. And often I could not have enough sleep as the sciatic pain keeps me up all night. I was just hospitalized because I had 2 attacks in a row which has never happened before. I took my medication regularly (Im on Lacmital and Clonazepam), had enough sleep and yet it happened. The neurologist told me that even with medication and enough sleep, it can occur once in a blue moon. I have to accept with whatever that has been bestowed upon me. I have no other choice. What else can be done? I forgot to mention that it is difficult for me to find a job here in Singapore because of my condition. Employers are afraid to hire me. I also forgot to mention that I had to stay back in University for a year because I failed a couple of modules. I would usually forget what I have studied after my attacks. But I am determine to finish my Bachelors and I did. I am afraid to face the society now as I am afraid that my epileptic attack would scare them because seizures can be very frightening and traumatic for the person who see it. I can only hope for the best from God and I cross my fingers on that every single day. :`)