Let me introduce Mrs. Pema Choki, 50 yrs. Undoubtedly, she is one of the strongest women I have ever met. Self-employed, she runs her own grocery shop and is also a proud mother of three children. By appearance, she looks, strong, bold and satisfied with her life.
I first met her at the hospital; she had come for her follow up appointment with her doctor. She was standing outside the clinic and I asked how I could help her. She mentioned that she was here to meet her doctor and saying so she handed her OPD card to me. I saw that she was on treatment for epilepsy.
Somehow, I felt like talking to her in greater detail as also knew that her doctor would be at morning rounds in the ward and would take some time before he came to the clinic.
I asked her if I could talk to her for a while and after a brief pause she agreed. I ushered her to EEG room and offered her a chair.
After she was comfortably seated and more can at ease, I started off by mentioning that it seemed she had been on treatment for epilepsy for quite a long time just by glancing at the thick pile of OPD cards she was holding. I proceeded to ask her when she had started taking treatment and how her life has been since then?
I could see via her facial expression that she was a tad nervous and excited hearing my question.
After taking a long breath, she started:
“Sir, I was diagnosed as an epileptic when I was about 22 years. I had already had 2-3 seizure attacks prior to that which my family and I ignored thinking it was due to physical weakness. After the fourth attack, my father took me to a faith healer to whom he narrated what happened to me. After carefully listening to my father, the faith healer nodded his head and seemed that he was aware and fully cognizant of what was going on with me. He asked me to sit on the chair and started his rituals which included sprinkling some water on me, then some rice followed by more sprinkling of substances of varied colors. This procedure took almost half an hour after which he informed my father that some evil sprit had been trying to posses me, that he had done all the necessary prayers and rituals to rid me of this evil possession. Further, he assured my father that there was nothing not to worry about since he had taken the required remedial steps. He blew some air into a fistful of rice in his hand and gave it to my father with a direction –”make your child eat four grains of rice three times a day for fifteen days”.
After hearing that every thing had been taken care of, we were grateful for the faith healers service and my father paid him in cash and also made an offering of a basket full of dry fruits. As he received the basket of dry fruits he added that if it (seizure) happens again we should visit him early morning of a full moon day. We walked back home, my father more satisfied and relieved than me. He continued to praise the faith healer as we made our way back home. Everyone at home was eagerly waiting for our arrival; the atmosphere hung about as if I was coming back with my graduation result. As we entered home, we were bombarded with questions from my mother and other family members. “What did the faith healer say? What did he do for you? Is it cured now? My father painstakingly explained everything in great detail.
So from that day, I had additional things to do, i.e. to eat four pieces of rice, morning, noon and evening.
Every day, my mother asked me whether I ate the rice or not. I diligently ate the rice at the instructed times and had no attacks and even I started to develop faith on the faith healer.
Then, soon enough it was New Years Eve and my family decided to host a party. We invited a number of close relatives and friends. I was happy and excited, we planned to stay up until we ushered in the new year. I helped my mother in the preparation of various dishes and serving our guests. After dinner, we had a bonfire on our yard. We had great fun singing, dancing and playing games like truth and dare. Finally, it was 12:00 am and we wished everyone for the new year. Our parents asked us to go to bed then but few of my cousins pleaded that we be allowed to stay till morning as we seldom met as a whole family. Our request was granted and overjoyed, we sang and danced through the night. Undoubtedly, it was one of the best times time spent with my cousins.
Next day relatives left, now it was me and my mother taking care of the home, cleaning, washing dishes e.t.c.
That very day i.e. 1st Jan afternoon, I had three seizure attacks in one single day. It was unexpected, I was scared and I could sense that my parents panicked. I remember very little what all happened after that. It was only on the next day that I could gain full consciousness. I woke up to find myself lying in the bed the same faith healer talking to my family members. I heard him saying –”she was outside last night the evil spirit possessed her again”.
My parents scolded me for staying outside for the whole night, I was still groggy and lethargic.
That very evening, one of our distant relatives–an uncle, happened to visit us at home. When he came to know that I was not feeling well, he asked what happened. My mother narrated what I had been experiencing with tears in her eyes. After listening to my mother’s narration, my uncle advised us to see a doctor at once. He had read and heard about seizures being treatable. Next morning my father, along with my uncle took me to the city hospital to see the doctor. It took a couple of hours to get there and I was quite apprehensive during the journey to the hospital. At the doctors, My father narrated what had been happening to me. The doctor asked me in detail about my attacks and said that my symptoms and episode were that of “Epilepsy”. He advised me to get two investigations–that was EEG (Electroencephalograph) and MRI (brain). Further, he prescribed one medicine and explained how to take the medicine and its timings. He also stressed that I should not skip a single dose or stop medication without his advice.
I was quite curious as to how I was getting these attacks and moreover, the faith healer had said I was possessed by some spirit. The doctor explained that I was getting these attacks because of abnormal electrical activity of the neurons in the brain and nothing else. He also explained that this was a treacle illness and that I would get better if I complied with the medication regimen faithfully. Hearing this, I was quite relieved. Also, I did not want to be possessed by a spirit of all things! He asked me to visit the clinic again with the reports of the investigations he had advised.
I underwent a MRI Brain and EEG Test and visited the doctor after two days. Looking at the report, the doctor confirmed that I was suffering from epilepsy.
Thereafter, the doctor told me that there were a couple of dos and don’ts for a person with epilepsy which I still remember very clearly.
1) Consult your treating doctor regarding your medicine.
2) Take adequate sleep at night.
3) Eat meals regularly and take medicine on time.
1) Do not discontinue or skip medicine.
2) Do go swimming.
3) Do not ingest alcohol or any substance that causes intoxication.
4) Do not cook in open fire.
“I decided that I was going to get better and take my medications regularly. Since that day, for the last 23 odd years, I haven’t experienced a single episode of seizure. I am really thankful to my treating doctor and the medicines for making me feel that epilepsy is no different from any other ailment such as hypertension or diabetes if treatment is taken on time and according to the doctors advice.”
As she narrated her experience with epilepsy, I could perceive how confident and satisfied she currently was.
As we still had some time, I further asked her about her family and how important the role of family in supporting her was?
She began with: “I am a proud mother of three children. My eldest is a son an engineer, daughter is married and the youngest is doing her university studies.”
Having epileptic attacks is not just a convulsion, loss of consciousness and coming back to normal life. Sometimes, I go through mood swings and I feel irritable at times. During these times, I need support from my family and friends and I am very lucky to have such a wonderful group of people in my life. I have a very supportive husband and family. My husband was aware of me having epilepsy and my medication before we got married. I had discussed him about my health condition and the medicine I was on. He responded in a very positive manner, comforting me by saying, even I am taking medicine for my hypertension. He has been truly my pillar of strength at all times. She added that if a person has supportive a environment, half of the complications vanish and that she gets the courage to face life come what may.
Finally, I asked her if she had to advice any person with epilepsy, what could she advise.
(she): “I am not an expert on epilepsy but still if you ask me about my experience I would say-
No one knows your epilepsy better than your treating doctor (listen to everyone but follow only your doctor’s advice).
As doctors can’t be with you 24×7 and medication has its own limitation, I have learnt as a patient one should have own dos and don’ts along with the medicine to stay seizure free. Along with the do’s already mentioned earlier
• Take your medicine regularly without skipping or stopping until and unless your doctor advices you to do so.
• No sleep deprivation.
• Avoid stressful situation as much as possible.
• Take adequate rest.
Just as she finished, her turn to meet with the doctor came. I thanked her for her time and for sharing her personal experience with me. I also asked her permission to share her story so that it could in some way inspire others with epilepsy. She readily agreed and so I do that whenever I get an opportunity as I’ve tried with this article.