During my childhood and throughout adulthood, I have had trouble with my parents, mentors, and acquaintances understanding my epilepsy. Some called my seizures fits/tantrums or even disrespect. This program has given clarity and realization of details on this issue. I first became involved with EFOF after it was recommended by associates, family and medical professionals after having a stroke and brain surgery in 2007. I attend the support group meetings regularly and attend as many of the extra events that are hosted and sponsored by EFOF as possible. The support groups have made a difference in my life because I now have a place to go to learn more about my seizure, a place where I can learn more every month about Epilepsy, speak to others who have been through what I have been through, and support others as well. EFOF has provided programs to reference resources in the area available to me, how to help others with different seizure types than my own. Also, how to talk to others about Epilepsy, the support group has been a tool and great resource for me and others.
These programs have changed my life by helping create new relationships and understanding while on my epilepsy journey.
In 2017 it will be the 10 year anniversary of my brain issues. 1973 at 3 years old, after an intense seizure experience it was discovered that I have a birth defect. A gap in my skull, indicating the bone tissue did not develop properly. At 7 years of age, surgery was performed attempting to repair it. Every 10 years since then I have a problem from the surgery: at 7 years old uncontrollable temperatures, at 17 a seizure, at 27 a stroke, and at 37 a discovery of bleeding on the brain.
I will be 47 years old this year. Who knows what will come next in my epilepsy journey, a mystery solved, hopefully. Although the year is still young, I may have discovered where the next chapter of this story will lead me. On March 4, I woke up with what felt like a sinus headache. By the following day, I began having issues with double vision but not the kind that can be treated with glasses. It is where I see things one on top of the other. I went to the ER at the insistence of my family and was admitted overnight for a CAT scan and MRI. No evidence of a stroke was found. Eye exams show that I have clear vision in each eye, they just aren’t working together. But this will not stop me from living my life to the fullest and participating in as many EFOF events as I can.