Dale West | Epilepsy Alliance Florida
When I was first diagnosed with epilepsy, I did not know I had epilepsy because nobody used that word. From having a tumor removed from my head to having grand mal seizures, and being told that I had a ‘seizure disorder’ but I was never told I had epilepsy which was surprising. I was afraid to admit that I had a seizure disorder. There is a stigma associated with that word. I used to work with advocating with the Alzheimers Association in DC and changing regulations for them and I want to scream from the mountain tops and educate those who need my help. Things got so difficult for me that I had to leave my business because I was unable to keep focus, manage or juggle my own business. This is finally my coming out story. I struggled with finding knowledgeable people, professionals willing to listen and people willing to advocate and educate you. Naturally, I felt hopeless when I found Epilepsy Alliance Florida. I was searching everywhere diligently, calling everyone and came across the organization through the internet. Although I have not participated in any activities yet because I have been with the organization for a month, I am optimistic after meeting and speaking with the staff.
Having epilepsy made me fear having other seizures. I felt insecure and second-guessed everything I did. Now that I have met the EAF staff, I feel excited and enthusiastic. I am looking forward to the volunteering opportunities and a forum to be heard. It is reassuring to me having a case manager that I know is helping me with the same urgency I feel. I feel supported by a team willing to help. I know challenges may come up but I do plan to participate and intend to reach as many people as I can.