10-Years-A-Slave---My-Struggle-With-Seizures

10 Years A Slave – My Struggle With Seizures

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You are a young boy, you are in class 8 and in a private primary school in a village in Maasailand. You are the emerald everyone in the society illuminates. You are in your final year and everyone is aghast of whatever score you will get. Everyone treats you like a super genius because rumors are that you own and operate a computer, something uncommon in the local homesteads, you being just a kid. You can’t complain about anything because you have everything that pertains to fun and play.

Schools break at 5 pm and you always rush home to play with your younger sibling something that gets you off the stress and pressure from school. On this particular day, like any other normal day, you go out to play. Your uncles and mother are in the house chatting. The fun you are having while playing is ecstatic. You are in bliss then suddenly…

A deafening whirlwind hits your ears. They dig deep into your canals as if coming for a bitter revenge. Voices from your head start calling you. It feels demonic. Abysmal thoughts strike you and you can hear every detailed voice and action in your cranium loud and clear. These are thoughts you cannot fathom. You can hear your grandma, uncle, mother, friends, and family all talking at the same time. The world rotates gradually and faster and your tiny head reaches into this ‘spacy’ and void planet of a pounding head and a confused subconscious. You are terribly in shock and the fear in you makes you start calling names. Sadly, your ears are blocked and you cannot hear yourself speaking. You rush to the closest person, your mother, and hug her. As you are on her shoulders, you are struck by this electric shock that pricks you from the toe and slowly to the brain. You enter into a trance, you start shaking and your eyes can’t open. It’s all vacuous and lacking. It feels hollow. Your body starts twitching and this mental pang is wanting. You want to die fast, you want to cry, you want to pray, but you can’t. Your mother’s arms become the solace of this mysterious death that comes as a plague. You pass out… Later you come and realize what you had was called an aura.

You wake up in a hospital bed, confused and dressed in new clean clothes. You hear voices, voices of doctors and nurses speaking in Swahili. You are not in your country. You are far away in a foreign land. You wake up but someone puts you down. You look around, the lugubrious hospital ceiling stares at you like a notorious debtor. You close your eyes but you can’t, you probably have slept enough. You become restless and bereft. You see no one you know and you are in great hunger. Someone you know kicks in, your mother. With your favorite pancakes and a flask of tea in her hands, she gives you this sad look that leaves you in awe. You ignore. She serves you tea and like a hungry wolf you take the first sip but in excruciating pain, you spill it on the floor.

You realize you have millions of porcupine spikes in your mouth. You then ask what happened and you are told you fainted. You are told that you were convulsing for hours. She says that you were twitching and stretching like an antelope in its last kicks on a python’s strangle. Hunger strikes you no more, your head does. You feel this sharp pain in your brain like a blood sucker worm sipping its last pint. You are given some pain killers and mum continues narrating her story as you are forced to take breakfast. She talks about how she thought you were dead. She tells you of how you endlessly vomited for hours and how doctors had to overwork their shifts for you. She talks about how she went outside to pray telling God why He should not take you, you are all she has. You get to know of another vocabulary, a seizure.

You are not moved by any of these. You are hysterical. You have this renewed energy and an adrenaline boost that you feel like jumping the whole day. The hospital becomes your prison but you insist that you want to go out and play. After hours of concentration, the doctors finally release you and you go.

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Life changes a lot, there is a great shift in your personality. You become sensitive, a delicate being and you are not the hang-out-with-friends type anymore. You are always worried, you realize that your sharp memory is deteriorating, you think a lot and you become this critic that looks deep into everything. You become negative, thoughts bombard in your brain always and you don’t enjoy the things you used to. You hate on almost everyone, you want to live on your own planet. You don’t fear death and you kinda like it more. You have to sleep in the same bed with a monster, you hang around with it, tag him along everywhere you go and even marry him off. That monster is fear but the worst-case is that you don’t know what you fear Your feelings become exaggerated. You go to the extremes and you can’t handle yourself anymore.

You want to snap back into your normal life but you can’t. You are in form three, you have been getting major and minor auras almost thrice to five times every week since you joined High School. You have been fainting at least once every term and the same old cycle of painkillers continues. Your mum is fed up, you get to Nairobi Hospital and perform an EEG. You are diagnosed with simple partial seizures on the temporal lobe and you are put on medication. You are on Carbamazepine 400mg and this drug has an extreme side effect you cannot handle. You become drowsy and calm. You are feelings are depressed and you are forced to live a life that’s not yours. You take drugs for around six months and your mum cannot afford the drugs anymore. You become worried, your mother moves from doctor to doctor who with their different opinions say the drug you are using is not effective for you. She gives up and takes you to her local pastor who prays for you. You think your mum has gone nuts but you keep it in your circle not to express your thoughts.

You were dependent on drugs, you suffer withdrawal effects which last for quite a while. You are underperforming in High School. You think you are living a life not your own. A life that nobody cares, you become suicidal you are twice negative and the care-free personality becomes part of you. You want to die, the auras are thrice as much, they quadrupled. You find a way of controlling your seizures by shouting whenever the auras come or blocking both your ears by your fingers. The struggle becomes real when you start realizing that you are losing part of your memory.

You are out of High School and start a cyber. Life is good. You become a monopoly at your village. You work on your failing personality and start interacting with people again. Results come out and you have passed. Your mother cannot explain how but you know of the prayer you were giving in High School. You have everything, you pay the house bills and even do shopping for mama. Everyone wants you to work for them. IT is the big thing now. You get great deals but you reject all as you are going to campus. You get few auras that year, some are severe, others are minor. You also get minor seizures that year.

You get to campus. No social life. You struggle through the period and your auras redefine. You get numerous seizures but you cannot stress your mum. You instead prescribe yourself generic drugs. You start taking cheap generic Tegretol Carbamazepine 200mg tablets once per day. You do that for two years. Auras get more severe but you brace on. You cannot concentrate in class as the episodes have doubled. You start your IT business in campus to cater for your pills. You are back to that introvert, negative and weird personality. You cannot have fun like the others, you cannot walk freely, you cannot stroll alone, you have to accompany a friend to school and back. You cannot go wild like the rest. You are a slave, you have to make money to survive but you have to do it with someone to watch over you. You are now a toddler who has to be taken care of.

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You lose the meaning of life, your health starts deteriorating, rapidly. Your generic nor real pills don’t work anymore, you are stressed, you think you are not going to make it. You are prepared to die. You get seizures in couples of hours, anywhere and everywhere. Body pains are all over you from the numerous falls. On one particular Thursday, when everyone is away, this particular friend comes in and finds you sleeping, You are bedridden with a heavy head, You tell him that you can’t make it. He takes your phone and calls your sister who takes you to the hospital and sadly you faint in the waiting room. It is 12 pm, You wake up at 5 pm, you are in a wheelchair, taken to the car and transferred to another hospital.

You wake up in the morning and you are in this hospital bed, on your right is this young guy of roughly your age or younger with a swollen stomach. He has cancer. On your left is this guy older than you, not sick but confined in a hospital because of excessive drinking. Both these guys are stinking rich but sadly… You wake up and you see faces. Faces that you can’t reckon. You look closer and for some minutes you recognize your mum, sister, her friends and your cousins. You have lost three-quarter of your memory, You can’t even remember your name. They bring you foodstuff, you have a little chit chat and they leave.

You share the foodstuff with this young guy on your right which he politely refuses. He tells you that the doctor has banned almost half of the things in this world for him. His dad arrives and he pleads that they go home as he was better now. The guy refuses. He is so used to the hospital that it has become his new home. You look at him and whisper a prayer. Despite you not being a heathen you thank God for your life, You thank God that you are of perfect health and you are not in pain. For a second you even wonder why you are there.

You wake up the following morning and you up for an MRI. You are now diagnosed with complex partial seizures in the left temporal lobe. You are given some medication which you take every morning and evening. You get discharged on the third day, kicking and of perfect health. That evening you spend at your sister’s but unfortunately, you faint again. You wake up to the shock of many of her friends who advise that you do yet another hospital the following day.

You get to another hospital and you are told that the medication you were given was not right for your kind of ailment. You are back to Tegretol 400mg twice a day. Your condition worsens, probably due to the disappointment that you have lost your memory, probably due to the thought that you are not human again, probably due to the disappointment that you cannot make it safe in life, that you cannot have your own family, cannot drive your own car and even probably not have fun anyone. No one really understands your situation nor what you are going through. Your dose is stepped up to 800mg but you still become worse.

You can’t remember anything. You have to replace your SIM cards due to forgotten PINs. Thanks to your browser, it saved your passwords. You become hopeless. You are two semesters to graduation and you really can’t remember anything you learned since Year one. You are down struck and have no reason to live. You can’t imagine seeing your friends graduate while you are bedridden. You are now delicate, the fear is excruciating and unexplainable. You get back to the doctor you are put to Escitalopram (Nexito), a drug that changes your mood, an antidepressant.

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It is sad that you are depressed at your age. It is sad that you have to survive with drugs and whenever you miss a pill, auras occur. You get better after you were put on Escitalopram but the side effects are wanting. You become dizzy every moment. The combination of the two drugs become overwhelming but Escitalopram changes your mood whenever you feel down.

You become this spiritual guy. You get rooted deep in faith. Bianca (RIP) happens, who really spearheads your growth. Kkrew happens and you get people to fellowship with. On one specific Tuesday, A guy named Rolf comes to preach, and he talks more about spirituality, he calls out persons who are sick and he prays for them. You are negative and believe such things don’t happen. After the service, you call him and tell him that you believe everything they are doing doesn’t happen in real life. You tell him that you have had a journey, bitter and rough. You tell him that you have never believed in healing from God. You think that he will dismiss you and tell you to go and get faith then come back but he tells you that he’ll pray for faith and then pray for healing.

Despite you taking drugs and getting well, you still have auras though not frequent. He prays and you have this sensational feeling. A feeling that you are rising to the sky. It is a cold feeling navigating through you which he tells you that it is the holy spirit. He touches your left ear and commands, “I command in Jesus name that you nervous system will respond!” You feel something, something that you surely cannot explain. You are renewed and with strength. You feel like a new being who knows of no seizures. You feel and know that you are healed and it is time to work on your faith.

You never stop taking your pills as you are quite aware of the severe withdrawal effects. You keep praying and in a span of like 6 months, you go see the doctor. He checks your files and he removes his spectacles. He wipes his eyes. He says of how glad he is with your progress, that you have moved from 1600mg a day for Tegretol to 800mg and now to 400mg. You have had no episode for quite a while. He tells you that you were worse. He tells you that he was worried that he was doing his all and you were not improving. He had wiped his tears. He is so happy with your progress. He strips off the 400mg to 200mg and did away with the Escitalopram.

****************************

It’s months and still counting that I have no aura. My progress has greatly improved and I am now the kind of person who backs up anyone who says the devil is a liar. I have battled, I have been bed ridden, I have lost my memory (Which I have greatly regained BTW), yes I cannot be the human phone book I used to be, I cannot even cram the location of a Bible Verse but I don’t confess that. I have never confessed that I am epileptic because I am not. I have never confirmed to any disease because I am not. I confess of good things. No matter my state, I keep hope alive, I become more spiritual specifically in hard times. Do you?

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Siloma Stephen

Siloma Stephen

I describe myself as simple yet complex, difficult to fathom and a hard nut to crack. I am made of unfailing love, one that sails my boat and oversees my flaws, one that binds me not on any law but nourishes my soul. I write from my soul, generally anything I feel I need to get off my chest most of which is based on my own life experiences, talents, and passions.

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About Author

Siloma Stephen

Siloma Stephen

I describe myself as simple yet complex, difficult to fathom and a hard nut to crack. I am made of unfailing love, one that sails my boat and oversees my flaws, one that binds me not on any law but nourishes my soul. I write from my soul, generally anything I feel I need to get off my chest most of which is based on my own life experiences, talents, and passions.

Follow me on Twitter

About Author

Siloma Stephen

Siloma Stephen

I describe myself as simple yet complex, difficult to fathom and a hard nut to crack. I am made of unfailing love, one that sails my boat and oversees my flaws, one that binds me not on any law but nourishes my soul. I write from my soul, generally anything I feel I need to get off my chest most of which is based on my own life experiences, talents, and passions.

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