Bouncing Back: Anthony’s story
I was living a normal life as a bus driver for a catholic school. I also was achieving as an administrator handling cash receipts and deposits. I was also overseeing the casual laborers in the school. I would pick up the pupils in the morning and drop them off in the evening.
I had a good job, a family with a wife and three children, two actually, the third was not yet born
I was living in Kahawa Sukari, I had a comfortable life.
That is when it came. It happened one morning after the first picking up, I was reading the newspaper and out of nowhere I fell. I didn’t know what it was but the Parish priest was called and they took me to the local hospital but I was referred to do some tests.
I was sent to Kenyatta Hospital, since I was still working the priest gave me cash for the tests. The scam showed normal results but the EEG showed that my brain was not normal and I was told I had to stop driving.
The down spiral
Things went very badly after that because driving was my passion and now the neurologist said I couldn’t drive unless I had been free of seizures for two years.
I had lost my job after one year, then I lost all my friends then my life tool of with my kids.
At first the seizures came once a month but when I lost the job, things started to happen very fast and I was under severe stress, wondering what to do next. I tried to get a job as a driver since I still had not accepted my condition so I got a job in the public service, route no. 45. But one day I fell as I was driving, what helped was the person next to me was a driver so he took control of the vehicle. I lost hope of driving, so I decided to do photography and someone lend me a camera.
One incident that really knocked me off was after a photography gig in Kiganjo. When I unlocked the door to my house, I heard the sound of the door opening into a vacuum. There was no one in the house, and not another single item. My wife had left and taken everything with her. I had been drinking but I sobered up in minutes.
Good thing is she had left me a mattress. Now I had to start looking after myself even cooking. I lost hope and fell into drinking. My seizures increased and I could fall up to twice a day. I don’t know how many seizures I would have at night since I was now living alone. All I know is that I became quite carefree drinking too much to escape.
It was really bad and scary. One time I had gone to Uhuru park to try find some photography work, but I woke up from a seizure to find two policemen guarding me, my camera had not been stolen.
Another time I fell while in town and when I got up I was surrounded by many women who told me where I was and helped me to know where to get a matatu home.
I’m glad that nothing severe happened, even when cooking I never fell on my stove.
One day I decided to take my kids for an outing so I contacted their mother and we all went to Uhuru Park. The kids wanted to ride in the boat but their mother didn’t want to so I got in with them and what do you know, right in the middle of the water I got an attack. The kids screamed and the guards came to the rescue.
I was doing all kinds of odd jobs to survive and one time someone asked if I could dig a septic tank for them. I wasn’t actually going to dig it myself, I would have subcontracted but when we went to look at the hole where the septic tank would be, I fell. I hurt my face very badly, it’s surprising I didn’t hurt my eye.
The scars on my body have resulted in a lot of stigma like I remember one time someone was either trying to make fun of me or just being malicious. He said if I was to be in the army I wouldn’t need the uniform because my body was already like the army jacket. That hurt terribly.
People who knew me no longer wanted to speak to me or even greet me.
People would also say things. When I got a seizure I would find people surrounding me talking all kinds of things. Some would say, this sickness has no medicine, some would say this is a curse and only a witchdoctor can get rid of it. So if I had a seizure and got up, that’s all I heard. No one was really helping, just trading myths across.
Seeking treatment
My mother felt bad and she went to a herbal hospital to try get treatment. I tried the herbs but they were not helping.
My sister said ‘Come to our church, the Catholic church does not have any miracles.’
She even booked an appointment with the pastor but I didn’t feel like going.
I went back to Kenyatta hospital and was put on epilepsy medication but it wasn’t working.
I tried different other hospitals. I would pray a lot especially during the rainy season. I would pray after a photography session that I don’t fall into the water. Before crossing a river I would always pray because what would happen of my work got ruined? I still pray.
The silver lining
One time I was covering a church function when I had an attack. The priest in charge, father Juliano took notice of me and did what no other person had tried to do. I had neglected myself, so he gave me food, clothes and even some money for my medication. The father took me to a missionary hospital where my medication was changed. This second batch of medication was rather expensive but, someone told the priest about KAWE.
First impressions
I could not believe how many people were living with epilepsy. I even wished I would have a seizure right there with those people who would understand but it never happened.
I started to come for a regular clinic. My seizures decreased for some reason and the stigma I felt disappeared. Also the priest gave me counseling and food. I needed this to have hope and for physical strength.
Decreased seizures
At KAWE I was given a card where I could record the regularity of seizures. At one point I was having two seizures per day but they decreased to once a day, once a week, once a month, once in five months I once on a year. It has been five years now since my last one.
A new life
I decided to start a new life by moving from the area where people only associated me with the seizures. My weight improved and I started going to the gym. I obviously have improved in appearance because when I visit my former home area I see the people who knew me looking at me to confirm that it’s really me and some are even afraid of me for the bullying they did to me when I was weak.
I live alone, but by choice. Simple things like crossing the road are no longer a problem for me.
Parting words
For those that still feel stigmatized, I tell them please don’t give up. Keep taking the medication
and if they don’t seem to be working talk to the doctor so that the dosage can be adjusted.
Take it from me, a time may come when you can stop taking the drugs when you are completely seizure free. But before then, please stick to your routine medication.
My name is DennisPaul
i used to enjoy good health during my child hood, when i was in class six i got the first seizure in school and my mum was called and came and picked me,we never thought it was serious and so i continued with schools but it would came later after some months and slowly by slowly it become frequent.
while in class seven i had to drop from school for a whole year,during this period my parents brought me to M-pisha hospital where i was put on medication (it was Tegreto and another one i cant remember) note most of times i would share bed with my mother,then the following year i went back to school, it was very difficult for me since to catch up and remember things i had learnt since it was like memory erased.
i had to repeat class seven again, i later went to class eight did exams i did not perform well i had to go back to class seven , noting am still taking medicine morning and evening( Thanks to my God because he provided them) after satting for class eight this time i performed well and passed (Noting my smaller siblings had already catched up with me in school), at one point my father suggested i drop from joining school but rather he stocks a shop for me for the fear that no one is there to keep an eye on me.
Later my dad and i agreed i Join Moi High School Mbiruri, where my brother was a teacher so that he can keep an eye on me, i Joined carrying my medicine with me (my parents would buy enough to keep me whole term), after the first term my brother resigned to go and pursue other line of career and was left alone again,
i would be attacked now and then, at times in hospital offcouse nothing to change but i would still continue with school, the medicines i was taking were very strong and would dose alot in school something that even some teachers never understood at times i would wake up as early as four am to read just to go and sleep in class because ireally wanted to read, the seizures were decreasing ass years moved on but i could still receive attacks, to be sincere i kept on praying alot coz this was my only defence God healped me i never fallen on fire, river or something that would heart me.
After secondary i managed to get B- (57 points) i could still experience attacks but thank God this never frustrated me , i loved farming alot and i was very active i even burned charcoal and did nursery beds for trees. on the second year i joined college to do accounting, at this point i would wake up and learn without falling asleep, God restored alot for me, i was now sharp and everyone would envy me in class little did they knew about my life, one day in college i got an attack and my girlfreind who is now my wife cried alot.
after college i started working as an auit assistant atleast this time really did i receive seizures, though was also drinking alcohol and still continuing taking medicines, i later married and got a child (girl) and i later dropped medicine after 17 years of using them and i was completly healed, i also stopped taking medicine.
Today am a managing partner of Dennis Paul & Associates (Certified Public Accountantof Kenya) and Wallace price registrers (Certified publi secretaries of Kenya) , i drive myself . all this Glory and honour to the most high God. we serve the living God
i would wish to Join the association
Hello Dennis,
Please check your mail. Also we would be happy if you could provide a picture to go with your story.
So encouraging. I too wish to join KAWE for the sake of my daughter who is epileptic.
Hi Casty,
Please fill the friends of KAWE form on the volunteers page to receive updates.
Kind Regards,
KAWE
Dear Kawe……am a mother in distress because of my 3yr old son who was diagnosed with epilepsy an yr ago he has been under medication but thing don’t seem to change kindly help me out or how to reach you or how u can help me out.i would also like to jion the society and learn more….thank you
DISTRESSED MUM
Hi Ruth, sorry about your son and about the distress you have gone through. When a family member has epilepsy, the whole family is affected.
If you would like a second opinion, you are welcome to KAWE clinics. Our office number is 0722594268, if you call anytime during work hours you will get all the information you need.
KAWE
KAWE and staff thank you for the good work that you are doing.
Thank you for acknowledging our work Kiarie.
Myñ name is Rose and i would like to thank KAWE for the great work they did in my life and continúe to do. The first doctor i saw told me ‘what you have isn’t fatal but it can be managed dont worry about it’. I still remember those words to date.