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.
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.
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.
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.
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.