Epilepsy: You can live with it, you can control it
It is controllable and in many cases controllable for life. Men, women and children suffering from epilepsy can lead near-normal lives, whether working, attending to household chores or going to school. They can get married, have children and be involved in social and religious activity.
They, however, need to be properly diagnosed by a doctor and scrupulously take the medication prescribed to them.“My son goes to school and is part of many activities,” says a mother of a 12-year-old, on the threshold of his teen years, recalling how he was diagnosed with epilepsy when he was five years old. Until then there were no symptoms.
He was born through an emergency caesarian at a private hospital, after which he had to be in the Neonatal Intensive Care Unit for three weeks due to an infection getting into his system. There were no major health issues thereafter. The first pointer of epilepsy came when she got a call from school that he had fainted. This was surprising because, even though a working mother, she always saw to it that he had his breakfast before going to school. The episode of fainting had come about with a shaking of his body.
Doctors performed Magnetic Resonance Imaging (MRI) of his brain, after which he was diagnosed with epilepsy and prescribed medication, some tablets in the morning after breakfast and others at night after dinner.“He leads a normal life,” says the mother, pointing out that doctors have advised him to stick to certain suggestions – not to starve himself when hungry, not to break rest, to avoid late night functions and events because sleep is important and get a good night’s rest and to take his medicine without fail.
She recalls how the doctors were very supportive, practical and realistic. The advice was simple: “There are two ways of handling epilepsy. You can be negative and change your entire life or be positive and learn to live with it.”Being positive and learning to live with epilepsy is what this family of four, parents and two sons, did.
According to the mother at first it seemed alarming but with assurances and explanations from the doctors “you come to live with it”. His little brother who is nine years old has also accepted it and is very supportive of the aiya. The family and the boy himself have learnt to identify the signals before the onset of an episode. “He does not have seizures. His symptoms include stopping talking and going blank,” says the mother, adding that the family calls it “getting into statue-mode” which last only a few seconds. Her son identifies it as “kakula kerakenawa” (the leg is twisting).
They know that this usually follows a few days after an infection like a cold or flu and what they have told him is that the moment he feels the onset of an episode, he should quickly sit, so that he does not fall and injure himself. If in school, he has been asked to tell his class teacher or his classmates closest to him that he needs help. The parents have informed the school authorities in writing and every year when he moves to the next grade, they tell his new teacher too. They have also told some of his friends.
At home, they hug him tight as the tremors pass through his body and feel his blood circulation quicken. “We maintain a log book, entering each detail even the smallest tremor and how frequent the episodes are for the doctors to evaluate when we take him for his check-ups,” says the mother.
However, she laments that society still does not look at this illness like they would at diabetes and as such “we are not open”. Very close family and friends know of his condition but no one else. “The school environment is very positive and inclusive but society is not,” she says, adding that there is much stigma, segregation and labelling by society.
While there is hope that the condition may taper off as he grows older, even if it does not they have come to terms with it and accepted it as an illness which is not life-threatening but very well manageable.What of the future? Citing the case of a person with epilepsy who became a professor, she says that her son should do what he likes to do. He is a “people’s person” and maybe that is the line he should follow. They are keeping it open, as he has to do something he will enjoy, while he has to face a few challenges such as mood-swings and being drowsy due to his medications, so that he can study and sit for his examinations.
A teacher recently told them that out of 10 sums he had got only three correct. But she and her husband were thrilled that he got three right, she adds. With her experiences, she has concrete advice to other parents who may have children with different types of conditions – “Go that extra mile. Send your children to school and actively seek a better place for them in society.”
| With correct medication he lives a normal life He was diagnosed with epilepsy at the age of 16. Now he is 42, married with two sons who are 14 and 10 and having a thriving ‘oralosu repair’ business.The early signs of epilepsy came after he shouted in his sleep one night. About a week later during the day, “mathakaya aath vuna” (he lost his thinking) for two-to-three minutes. Later his mother and two older sisters told him that during that time he spoke of irrelevant stuff.Those were difficult times for the family as the breadwinner was dead and soon after his Ordinary Level, he became the ‘man’ of the house bringing in a few rupees from odd-jobs such as a helper to masons and a cleaner on a lorry.He also consulted a lot of doctors, going not only from one government hospital to another but also a few private hospitals which he could ill-afford. After about eight years, he just gave up taking his medications. At the persuasion of his relatives, he saw yet another doctor whose medication seemed to work. “Tikak palanaya vuna,” he says. (There was a little control of the condition.) The next doctor under whose care he came two years ago, went beyond the call of duty, like many doctors do for the multitude of impoverished patients who have recourse only to state hospitals.He was sent to the Anuradhapura Teaching Hospital, kept there for eight days and video-scanning of his brain performed by making him wear a helmet with wires running from them giving out signals which were recorded on a computer. These images were then saved to CDs and his doctor who was in another area, scrutinized them to get a clear picture of how the episodes when he lost his mathakaya were triggered.Following these tests, the medications in the form of tablets were changed. “Mage lede palanaya vuna,” he says, adding that lakshana neththatama nethi vuna. (The episodes are under control and he has not got them since.) His daily routine is leaving home for his clock-repair shop with two packets of rice and curry which his wife has packed for him for breakfast and lunch. If she is unable to do so, which is rarely, he would get some string-hoppers and curry from a boutique close-by. After opening his shop, budun wendala, he has his breakfast and then swallows his tablets and attends to customers who bring their oralosu. Late evening, he closes his shop and returns home to a dinner cooked by his wife and then takes his tablets once more before going to bed.It is important to take the medicines, he says, adding that the tablets control the condition and pave the way for him to lead a normal family life, while participating in religious and social activity in his hometown. | |