Fifteen years ago at the age of 14, I began having focal (simple and complex partial) seizures. At the time, I didn’t know that they were seizures; they were just strange, out-of-my-body experiences that had to do with words. Approximately eight years later, I started having tonic-clonic seizures – those are the “grand-mal” type that everyone thinks of when they hear the word seizure. It wasn’t until then that we knew that I was having different types of seizures all along.
With that, I was officially diagnosed as a person with epilepsy and began taking medication. Things went very well until three years ago when I became non-responsive to the prescription medication. I tried dozens of different types and none of them seemed to be absorbed. My seizures became more and more frequent; almost daily. I ended up having to leave work, losing my driver’s license, feeling like a full-time supported individual with no independence, and constantly exhausted and defeated. I no longer felt like myself with a major change in my personality. Though many things felt negative and upsetting, there were certainly positive sides to this. I found that this was something to research and to work on with extreme passion and to talk about with others in similar situations. I am glad to openly share my experiences in order to help others and to take away stigma related to epilepsy.
Given all of my experiences, medical history, and doctor findings, I ended up having surgery in December 2015. A neurosurgical team removed my brains dominant temporal lobe and hippocampus where most of my seizures tend to begin and I have not had any since then.
Through my entire experiences from time of diagnosis to surgery to today, Epilepsy South Eastern Ontario has been a tremendous help. They’ve been there to teach me things like the “non-doctor” terms; They’ve been in their office and in the hospital neurology clinic to meet for any help; They’ve responded quickly to social media; and they’ve made wonderful work and school presentations to explain epilepsy to those not familiar.
Being a person who actually benefits first hand from the funds raised for Epilepsy South Eastern Ontario, I can’t say enough just how amazing this organization is and how well the funds can help. I’m not sure how I would have dealt if I didn’t have the support that I did.