I Have Epilepsy but Epilepsy Doesn’t Have Me

June 30, 2021

I Have Epilepsy but Epilepsy Doesn’t Have Me

My name is Tina and this is the story of my Epilepsy journey. I have had Epilepsy since I was 11 months old. I had a febrile seizure that constricted the left side of my brain, making the left side of my brain smaller than my right. I was considered a very high-risk child. One reason was due to my seizures, and the other was due to the doctors having a hard time finding a medication that I was not allergic to.

I had seizures on and off while growing up. This made growing up as a kid a little hard. I was having absence seizures in school and at home.

I first came to the Epilepsy Alliance Florida in June 2013. Since I have joined I have enjoyed participating in the  walks, client events, holiday parties, and support groups. I have also enjoyed the opportunity to listen to the Epilepsy journey of others while offering advice for what they can try based on what I have been through, with the wonderful happenstance of hearing positive feedback most of the time. I have also found myself volunteering there when needed.

The Epilepsy Alliance Florida Services and Activities has made a big difference in my life. First of all, I have a great case manager. If I ever need help with something, or do not understand something with my epilepsy, Rachel Stevens helps me. They always make sure that we understand everything that we need to understand before we leave the office. If it was not for Epilepsy Alliance Florida, I don’t know where I would be throughout the past six and a half years. Epilepsy Alliance Florida has achieved greatness by bringing in guest speakers to educate us on new medications and treatments that are available.

Epilepsy Alliance Florida has contributed to change in my life in many ways. I have become a more positive as well as a stronger person. I am not afraid to speak up and speak out about my Epilepsy. I have been able to teach others that yes, I have seizures, but that does not mean that you have to be afraid to be my friend. I have been able to teach my family and friends what to do when I have a seizure, which has saved my life many times. I’m constantly asked if given the chance to relive my life, would I change anything. I tell everyone that I would not, because then I probably would not have my two wonderful children. I also would not know as much about Epilepsy and how many different types of Epilepsy seizures there are that I do now. Furthermore, I would not be able to educate others on how to help me, and others like me, when a seizure is occurring. I have been taught most of what I understand about my Epilepsy by the Epilepsy Alliance Florida services.

Going forward, some of the new and continuing challenges I might face are having less seizures every month, or year, and being able to come off seizure medications for the rest of my life. I hope to be able to continue to do everything that the doctors said that I wouldn’t, or couldn’t, do that I am doing now. To be able to have a good enough memory to get and keep jobs. To be able to remember people’s names, addresses or anything that I have been told by anybody – or even to remember something that I do not write down. Throughout my continued journey, I aim to keep my faith in God by never giving up, no matter what life throws at me. I plan to continue to participate with Epilepsy Alliance Florida for as long as I live, and will continue to bring friends and family  to help spread the word about how epilepsy affects the mind, body and spirit of a person.

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