Living well with epilepsy (Republished)
By Lisa Kiarie
Being an individual living with epilepsy, the one question I get a lot is “what is epilepsy?” The scientific definition is a chronic neurologic disorder with many possible causes and causes include illness, to brain damage, to abnormal brain development which causes seizures. A seizure is a sudden surge of electrical activity in the brain. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness.
With this am always faced with how to simply explain something even I have struggled my whole life to understand. I have however thought of a definition that is less demeaning to me and easier for the public to understand. Epilepsy is simply fighting you for you. I choose this phrase because from personal experience that is how it feels. An example is during the seizure, the pain is so intense and real and I fight for it to end but the more I fight the more prolonged it is. The experts say “you should let the seizure take its cause” but it is easier said than done. I say fighting you for you because on several occasions I have to fight different factors that may possibly cause epileptic seizures. These factors range from diet change, to being emotionally hyped, a change of environment, an infection, a simple pollination of flowers, the anti-epileptic drugs, and the most difficult and unavoidable monthly cycle amongst many.
My first seizure happened when I was still a baby but they classified it as a convulsion and told my parents I would grow out of it when I got to a certain age. Well that did not happen in fact they got worse so I was put on medication. From around the age of 11 my family moved a lot due to my dad’s different work postings, we eventually settled in Zimbabwe. I had a neurologist in South Africa who monitored my progress and said I was fairing on well and was even getting my Anti- epileptic drugs reduced but my health deteriorated again. No lie this had both a physical and psychological effect on me and I felt like yet again I had failed at accomplishing a goal. While the seizures were getting the best of me physically, getting emotionally bullied definitely had its fair share of negative effects on me psychologically. I decided that going to school was not an option for me as it was a reminder of my abnormalities.
My parents were able to somehow convince me to go back to school. I had no friends as people thought it was contagious and that witchcraft magic had made me the way I was. I went through high school feeling and being lonely with just a handful of friends who to some extent understood my condition. It is hard up to date to explain epilepsy because people are unfortunately still uneducated on the matter. We moved back to Kenya (my home country) where I finished off high school studying under the Accelerated Christian System. Things here were none the less the same as in Zimbabwe; Same reaction and same treatment. I joined University in 2017 and I was determined that it was a fresh start for me. No one knew of my condition and therefore I fitted in nicely.
At first I was very reserved but as time went by I became fairly out spoken. With my so called determination of being “normal”, for the first one and a half years of university I would get sick and have serious injuries because I did not want anyone to see that side of me. I had/have encounters with lectures telling me I faked my condition so as to skip class or not do tests and on top of that had/have memory loss issues. I also understand concepts slower than the rest on certain occasions but it is hard to prove all this. As expected it finally came out, people knew about it and of course asked questions. My friends were helpful when I had the seizures and would put in the effort to make sure I got the necessary help. The medical team was and is still helpful when called upon.
I am in my last year of University (2020) and honestly I have been through a lot but through those experiences there are positive factors to take from them. Yes I still do get seizures but living well with epilepsy is a goal I hope to achieve. I am working with my neurologist to see what Anti- epileptic drugs work best for me. I recognize that the experts can only do so much and it is upon me to do my part.
Stress is a major problem for me. I can’t live with it and can’t live without it. In order to be able to control stress and minimize spin cycling in my mind, I have a list of do’s and don’ts to help me cope better with stress. Working of stress with physical activity and knowing when you are tired and resting are some pointers.
Memory loss (brain fog) and short concentration span is another problem for me and for that I try having sticky notes and phone reminders to try curb it. Eating right also contributes a whole lot when it comes to mental clarity. A healthy diet is beneficial both physically and mentally.
Having a seizure pre, during, and post plan is key because it helps the people around you to know what to do and not to do. Having a support system of family and friends is crucial because you don’t have to worry about being in safe hands.
The most key thing to do is communicate with your neurologist. It is important that you let him/her how you are faring on, how your AEDs are treating you because there are many other modes of treatment. If you feel the neurologist is the problem then change them, and never self-medicate as the interactions may have negative effects.
Am not an expert but these are just personal experiences that I am sharing with hopes that they will help others and let them know that we all have a story to tell and we are perfect in all our imperfections. Even though I may feel like a burden because I get seizures and can’t do some “simple” things, I am reminded that every person is differently abled.
Lisa Kiarie is a senior student currently studying Bachelor of Arts in International Relations with a concentration in Peace and Conflict at the United States International University - Africa in Nairobi, Kenya. She is the founder and CEO of the upcoming epilepsy foundation LKEF as well as a mental health advocate. As an epileptic, Lisa is passionate about raising awareness for epilepsy so as to provide the necessary resources needed to equip and cushion future generations on how to treat, manage and eradicate the neurological condition while overcoming the stigma around it. She can be reached at firstname.lastname@example.org