Diary of a Victor

Don’t imprison your heart, Don’t cage your mind, Don’t silence your voice, Dare to dream.

Jackline Nganga

Jackline holds a Bachelors degree in Law from Moi University and is Currently finalizing on her Masters of Arts degree in International relations and Diplomacy from the University of Nairobi. Additionally she has undertaken several relevant courses in Human rights, Result based Management, Devolution & Governance, Social justice and Refugees law. She has accumulated six year experience in working with state agencies and civil society organizations on Women empowerment, Gender integration, Sexual and gender based violence, Governance and Social justice. Her competencies include: Advocacy, Policy development, Programme design and implementation, Programme reporting and Evidence based research. She is passionate about Epilepsy advocacy, governance and human rights having battled Epilepsy for 17 years.

I was first diagnosed with Epilepsy at the age of ten years after two years of fainting episodes and having seizures. My father was   civil servant with no other source of income  and my mother was a stay at home mother. I suffered memory loss as I had  Temporal lobe epilepsy, you have memory loss issues even after recovering . Temporal lobe epilepsy affects memory as the temporal lobe of the brain creates memories. In rare cases, memory loss may be as a result of  anti epileptic drugs side effects . I have managed epilepsy for 17 years and this is my third year seizure free.

Lack of emotional support and understanding trigger suicidal attempts especially to teens and young adults. I attempted suicide at 15. Got three days in a coma and here I am. Alive. It’s really difficult with certain medication. You read the leaflet and it says things like “weight gain” or “ideations of suicide”. There are those things that you think only happen to other people, will never happen to you, and then they do. And then now what??! The best advice I would give is that you try as much as you can to understand your loved one’s illness and medications and the effects. I had a seizure that left me reeling for days as I did my KCSE.  Drugs work but please read about them. I had to settle with my doctor on the ones that managed my issues and caused me fewer trips to his office.

Pregnancy and epilepsy? A mother, there are people who believed epileptics don’t have children. You need to follow doctors advice on this. I got pregnant on tegretol and it was crazy. My doctor kept reminding me over the years not to get pregnant without informing him. I got pregnant without any plans and it wasn’t easy. Phenobarbital and Depakote carry the highest risk on pregnancies than Tegretol and rivotol. The drugs can cause birth defects such as spina bifida. Additionally, The pregnancy in itself can trigger seizures which aren’t safe for the pregnancy. They had to do CS because of the severity of the seizures.

How did I deal with the stigma and isolation, it got to a point I had to hold my head high and believe in myself when nobody believed I could ever be anything. I cried a lot, I became a friend of Jesus and I had no choice but to be strong for myself. Stigma made me suicidal but first time I attempted suicide, got into a coma and survived, the tears of my father the day I kinda ressurected and how happy he was to see me alive made me realize I was important to someone. I have locked myself in and cried myself to sleep. Many people who know me think am strong but behind the brave face and the warm laughter is a woman who has been wounded, who has given up many times, who has cried and gone crazy. Woow. Its been a long 17 years. God just loved me and kept me going.

My father beloved in me before I believed in myself. He went into debt to educate me when people thought I couldn’t be anything. His support and my faith in God has kept me strong over the years. I have dared to dream, refused to cage my heart or believe that am a sick woman who can’t have a career. I am the first person to train as a lawyer in my village and now undertaking my Masters degree in International relations and Diplomacy.

Rise above 

The foundation aims at improving the quality of lives for people with epilepsy through active support groups and raising awareness about epilepsy.

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Email: info@hatuaafrika.org
+254 710 679066/
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