Scarred

 

On the morning of her 25th birthday, Rita was in exceptionally high spirits. Apart from it being her birthday, and her 25th birthday for that matter, she had just been finished with her period without having experienced a single seizure throughout the five days. She hated that time of the month. Since she started her menses at teenage, there had never been a greater source of depressive anxiety in her life. Rita had also uploaded her attempt at Adelle’s “Hello” to YouTube twenty-four hours earlier and as she would learn that morning, it had fetched the most views and comments. It was the third cover she had done, the first two being Juliana Kanyamozi’s “Woman” and Nyota Ndogo’s “Rafiki Yangu”.

It was 9:00am. The air outside was crisp. Rita sat on the couch in their living room as she scrolled through the comments on her YouTube channel, liking some and responding to some while smiling. She was blown away by the unprecedented kind reception. Of course there were those who asserted that she was just a wannabe and those who still had thing or two to say about her scar. Those, she ignored. She was not going to pay attention to negativity, not especially on her birthday. Then there were those from whose comments she read sympathy. She could tell that they were from those who knew her from Facebook where she had shared her story under #MyStory series. She hated being an object of sympathy. It pierced her heart. Her esteem was still fragile. But she deliberately fought the temptation to be unnerved by it. She was starting to feel dizzy from too much staring at the tablet when the door creaked. It was a kitten playing with its tail behind the door that she had left ajar. Sighing, her gaze shifted to two framed images of her mounted on the opposite wall. She was struck by the stark contrast between them. One was a close up photo that she had taken in studio on her 23rd birthday. It was pristine. All flaws had been edited out so that her skin appeared silky and smooth, a far cry from what it actually looked like. In the picture, she wore long dark purple Senegalese twists which gelled with her skin colour and conveniently fell on one side of her face. The scarred side. Throughout her college life, she had worn long weaves, or braids or twists falling on the left side of her face and long enough to conceal the scar. The picture, she thought, was a glaring and a poignant reminder of what would have been. She thought it pretentious.  The other one was a pencil drawing. It was the most accurate representation of her face and neck. It was drawn only two days to her 24th birthday. She had just completed her counselling sessions at the time and had made a pact with her inner self to love herself in totality.  To own her scar; to love is as an inseparable part of her. Leaving the shrink’s office, she had passed by an artiste’s studio to get the drawing done. At her request, the artist had perfectly contoured out the edges of the scar that covered the left side of her face, widening the left eye a bit, down to her neck. He had highlighted its knitty gritties using varied shades to mark every bump and dip. Every light and dark patches. It looked so real; so surreal. As she stared at those two disparate representations of her, her heart lurched as her eyes welled up.

Her full name was Rita Chepkoskei. She was named Chepkoskei following the circumstances that surrounded her birth. In her community, Chepkoskei and Kipkoskei for a girl and a boy respectively were names given to children born under difficult circumstances. Usually, names there were inspired by time of the day, or night, when one was born with a prefix Chep- if it was a girl and Kip- if it was a boy. For example, a child born at midnight, kemoi, would be named Chepkemoi and Kipkemoi depending on their sex. But in other instances, the situation of birth took precedence as was in Chepkoskei’s case. Rita on the other hand, was inspired by the name of the saint her aunt Lisa had desperately venerated while her mother was under the knife in the I.C.U to bring her to the world. Rita, they said, was the patron of hopeless cases, of things almost despaired of. When the doctor had intimated that the prognosis of preeclampsia was poor, and when Chepkoskei’s mum Mary had taken long to regain her consciousness after the emergency Caesarean Section, Lisa had resorted to prayers.

Rita’s mother, had been going about her usual house chores in her rural matrimonial home in Kisiara village when she was all of a sudden stricken by a severe bout of a heartburn. Her husband was away in Kericho town for work.  So severe was the heartburn that Mary had stopped all she was doing, spread a sack on the floor and stretched on it hoping that the pain would ease. But it did not. Instead, she started convulsing, gasping for air. Her mother in-law, with whom she shared a house as was the norm, given she had been married a few months earlier, had raised an alarm. Mary was at the time eight months pregnant with Rita, her first born and an only child for a long time. Neighbours had filled their compound and in no time, a stretcher had been improvised and Mary was rushed to the hospital. At the hospital, she was diagnosed with preeclampsia and was immediately booked for an emergency Caesarean Section. Word had reached her sister Lisa who lived at a nearby centre and she joined them at the hospital.

 Lisa was Rita’s mother’s only sibling. She was their first born and her polar opposite. She was a prayerful and staunch Catholic. She never skipped the daily Masses, evening benedictions, Rosary prayers and was always up to date as to when each Novenas were prayed. She always recited her rosary prayers in Kipsigis, and there was an almost theatrical musical quality to how she did it. Whenever she went visiting as a young girl, Rita often times dozed off in the middle of Lisa’s Hail Mary’s. Or during the Litany of saints, she would answer “pray for us” until she started drooling with her head cocked to one side. And her voice would slow and eventually get drowned by sleep.

Her Mother’s name was Mary. Her father’s was Kenneth. When her husband took her home for the very first time, she was treated to a cold reception mainly because she was the daughter of a single mother. A nobody. A woman who had failed to keep her marriage.  Mary’s mother had been married by a Kisii, bore two children with him and had left her marriage following years of abuse. She had settled in Kericho town where she started a cereals business and raised her children single-handed. Rita’s grandmother had said that she wanted a woman with a solid identity and not a daughter of riffraff. In their community, when a woman left her matrimonial home for whatever reason, she acquired a new identity. And often, a shame-struck identity. But Mary’s enduring love for her husband kept her. It led her to endure the cold-reception and treatment that would follow. Besides, she was three months pregnant and shuddered at the thought of going back to her mum in her situation.

Mary and Kenneth had met at an Indian’s hardware shop in Kericho where they both worked. After her final year examinations at Kericho Day Secondary school, Mary had looked for something to keep her busy as she waited for the results. She had landed a job at the shop as a Cashier. Kenneth was the store keeper and be had been working at the shop for three years. Theirs had been love at first sight. Mary had learnt that she was in the family way after a few months of seeing Kenneth. She had panicked, but Ken assured her that he was going to marry her.

The Scar

At fourteen and confident that her seizures were under control, Rita had started helping her mother in the kitchen. She was in class seven. Her illness had delayed her enrolment for school for two years. One evening while in the kitchen, sitting on a stool as she was waited for milk to boil, she had an epileptic attack. Unbeknownst to her, her period, which was emerging as a new seizure trigger, was starting that evening. She toppled with her head directly over the sufuria of milk which had just begun to boil, flipped it off and fell directly on fire and started to shake. Her mum, hearing the commotion from the next room rushed to rescue her, but it was too late. The skin on the side that laid on fire was white. She poured cooking flour over the wound and rushed her to the hospital. Rita sustained third-degree burns. She was discharged from hospital five weeks later, fully healed, but permanently scarred.

Rita. 

 Rita started seeing a shrink when she was 23. It was her best friend Mario’s idea. According to Mario, Rita had invisible wounds that needed to be expunged. She had started experiencing unhinged episodes of meltdowns and was occasionally suicidal. After weeks of persuasion, Rita had agreed to it. Because she could not afford to pay for the services, she emailed the university Catholic chaplain, Fr. Roche, requesting him to finance her counselling sessions. It was a no brainer for the priest seeing as Rita was an active member of the Parish. It is then that Rita begun digging about her childhood. Before then, she had never asked her mother about how her illness had begun or how and why her mother had separated with her father. She knew however that her dad had died tragically not so long after their separation. As Rita listened to her mother, she could tell from the manner in which she talked about it, from the mist that clouded her eyes, from the slight tremor in her voice, from the occasional breaks, that it was painstaking to give the recount. But Rita was ready to confront her fears. She was patient. In the end, their eyes were bloodshot from too much crying. Rita had leaned forward towards her mum and they cried some more in each other’s embrace rubbing each other’s backs. 

Despite being a preterm baby, Rita had had a normal childhood until when she was three years old. That is to say that she had been a bubbly and chubby baby at 3 months old, babbled at six months old, would sit and stand independently at 9 months, and was playful-until she wasn’t- and such like normal things. She was also her father’s darling and he would come home every weekend to see them. One evening as she was playing with other children in the field just behind their house, she suddenly collapsed and started shaking uncontrollably while drooling and producing sounds. She was about three years old at the time. Her friends and playmates, who were also her age mates, had been so scared by the sight that they started screaming calling her mother’s name. Her mother had rushed to the scene and had almost fainted when she saw Rita in that situation. She pinned Rita to the ground in an attempt to stop her from shaking. Rita shook for about two minutes then stopped and laid still. She then peed on herself. And did more. Mary was shook, numbed and devastated. She carried Rita in her arms and took her home with her playmates in tow, asking her endless questions. “She will be okay,” she assured them. Even when she was not sure of it herself. She had just placed Rita on the bed when she got another fit. Mary dashed outside, crossed over the knee-high fence into the garden, pulled some onion tubes and rubbed Rita’s nose with it while pinning her onto the bed. It is what she had seen being done to people when they fainted. Rita’s grandmother had driven her cows to the river to drink water. Even in her old age, she still attended to her cattle as though they were raison d’etre. When she came back, she found Mary preparing hurriedly to take Rita to the nearby dispensary seeing as she had started developing a fever. Rita’s grandmother was indifferent to everything Mary told her. She would later be heard claiming that Rita’s illness wasn’t normal, but was witchcraft from Kisii land where Mary’s mother had been married. The truth that she never talked about however, was that her own husband had drowned in River Kipchorian seven years earlier when he got an epileptic attack, the second in his lifetime, while crossing it. There had been no one nearby to rescue him. His lifeless body had been noticed an hour later by some children while crossing the river. The post mortem report showed that there had been an epileptic activity in his brain prior to his death.

At the dispensary, Mary was given Calpol syrup for fever and given a referral letter to Kericho District Hospital to see a neurologist. Night shadows had begun to gather when Mary reached home. She was listless. Thankfully, Rita had fallen into deep sleep. It was such a relief for Mary as she prayed that she would not get another fit. That night Rita slept peacefully while Mary tossed and turned until she decided to sit and keep an eye on her baby until morning. She could not bring herself to sleep. The following morning she prepared to go see a neurologist as she had been advised. Rita had an Electroencephalogram test and was diagnosed with Generalized Epilepsy. They were given two sets of medicines that Rita was supposed to take once a day. Mary had broken down in the doctor’s office when she learnt that epilepsy was only manageable, and not curable; which also meant that Rita was going to be on medication her whole life.

Things did not change much with the medication. Rita would frequently get seizures and worse, she became more susceptible to infections. As a result of these unpredictable and sometimes aggressive attacks, her friends started fearing to play with her. But Rita would always run after them out of innocence. Besides, she was still not of age to understand what was going on. Often times, her friends would be found dramatizing how Rita shook during a fit. 

There was a well some a hundred metres from Rita’s home from where women drew water mostly in the mornings. One morning, Mary’s neighbour pulled her to the side and told her about some herbal medicine that had cured a child of someone she knew from epilepsy. Mary was desperate and was ready to explore any options available. They agreed that she would get her the medicine at a small fee. She did. Mary withdrew Rita from the Anti-Epileptic Drugs that she had obtained from the hospital and started her off on the herbs. Rita was made to drink half a cup of the medicine every day. Initially it had looked promising as Rita’s seizure frequency significantly reduced. But it turned out to be a fleeting relief as two months later, Rita’s health started deteriorating exponentially. She would get five seizures in a row in a single day. Her appetite went down. Her hair thinned. Her skin grew dull. Mary took her for prayers. The pastor, who claimed to have healing and prophetic powers, told Mary that Rita’s illness was a manifestation of a generational curse. That someone in her matrimonial family tree had strangled someone to death and buried him in the bush, and that is why Rita appeared to be struggling when she got the “demonic attacks”. He gave Mary a balm so she could be applying on Rita’s forehead and some holy water. He also advised her to take a ten days dry fasting for deliverance. 

Mary adhered to the pastor’s instructions but Rita only got worse. She developed a stutter and eventually lost her speech completely. Her eyes became pale. In the meantime her marriage had hit rock bottom. Kenneth did not come home as often as he did earlier and was emotionally unavailable. He was always irritable and overtly rude to Mary. 

“I told you. You wouldn’t listen. Now look. Just look” his mum told him. 

When it was clear to Mary that Rita was going to die, she packed all her clothes and Rita’s and went to her mother’s house. She preferred to have Rita die from there. Mary’s mother could not believe her eyes. She harangued her daughter for keeping a sick child in the house for that long. The following morning, they both took her to Tenwek Mission Hospital where she got admitted for a fortnight. Her system was detoxified from the harmful herbal medicine that had overwhelmed her liver and kidneys. She was then put on the same medication that Mary had disposed earlier and was prescribed a special diet. The first few weeks were tough with no visible improvement. But two months later, Rita sprung back to life. She regained her speech gradually. Her skin brightened and she started joining in the neighbourhood kids’ play. Mary had gathered the neighbourhood children and talked to them about epilepsy. She told them not to freak out if something happened to Rita during their play. 

At six, Rita was enrolled for school.

When Mary left her matrimonial home, Kenneth remarried shortly. He was brought a wife from Trans Mara, a very dark skinned woman whose brownish front teeth protruded so that her lips wouldn’t meet even when her mouth was supposedly closed and who according to his mother was a grounded woman from a respectable background. Notably, Kenneth had started drinking heavily. Two months into his new marriage, his lifeless body was found by the roadside after a night of a heavy downpour. Ostensibly, he had had one too many and had got overwhelmed when halfway home, it started raining heavily.

 

Rita rose and made towards the mounted images. She had taken two steps when she felt inert, collapsed and started seizing. 

PS:

Hello reader.?

 I come from a community that is still fairly ignorant about epilepsy. Epilepsy is not acknowledged as a true medical condition. Which is why it is not uncommon to see parents of children with epilepsy seeking meaning by visiting self- professed “prophets”. 

There are myths about epilepsy that MUST be dispelled. I have this disturbing memory from my childhood when at the shopping centre people had formed a circle around a seizing man. He had collapsed in mud. Nobody went near him. What I heard was that he had “kibaabaa” -a corruption of “kifafa” the Swahili name for epilepsy- and that if you touched him, you would contract it. I did not know anything about epilepsy except that it was a strange and rare illness. Now, those adults were not evil. They were ignorant. And there is something we can all do about ignorance. 

In my adulthood I’ve seen people putting spoons in the mouth of a seizing person, so that they don’t “swallow” their tongue. Others get pinned down so they can stop shaking. 

Here’s what I have learnt about epilepsy; 

Statistics show that 20 in every a thousand people have epilepsy. 

Other than health challenges that come with epilepsy, some children may suffer moderate to severe learning difficulty in school. Our education system does not have provisions for such children. I cannot get started about the troubling idea of defining success as one thing only; stellar grades.

Epilepsy management requires patience. Sometimes one regimen does not work. Effectiveness therefore is sometimes achieved through trial and error.

Some children and adults have more seizures than others for unclear reasons; and that what works for one person may not necessarily work for the other.

 That triggers are very varied and every case has to be looked at independently. 

What to do when someone near you gets an epileptic attack?

Put the person in a recovery position-position their neck in such a way that air flows freely

If you can, cushion their head so that they don’t get hurt when seizing.

DON’T pin them to the ground. There is nothing you can do to end a seizure.

DON’T put anything in their mouth. It does more harm than good. Besides, they can’t possibly swallow their tongue.

Move any objects that are likely to hurt them. If the objects are stationery move the person.

Reassure. Note that, a person who has had a seizure doesn’t usually know that they had one. When they recover, they may look disoriented. Reassure, but don’t ask them how it felt like.

If the person seizes for more than five minutes non-stop, or gets multiple attacks, call an ambulance.

Finally, we do not say that one is epileptic. We say they have epilepsy.