https://www.epilepsyawarenessday.org
November has become the most important month of the year for me. Bobby (my husband and greatest supporter) and I will attend the Epilepsy Awareness Day at Disneyland November 2nd and 3rd.
Last year Bobby and I met dozens of people who have epilepsy at the Epilepsy Awareness Expo and had a wonderful time getting to know them. I loved hearing about their experiences with epilepsy, both good and bad. Though it has been ten years since my Charley passed away I still feel the empty, hollow, lonesome part of my heart that was created by not having anyone who truly understood our situation as we dealt with Charley’s seizures. Though I am no longer a caretaker to Charley the open wounds his epilepsy created in my being, at times, have felt like they would never heal.
Having the opportunity at the Epilepsy Awareness Expo to share my seizure experiences and help others grasp on to the hope and understanding I offer has helped me begin a healing process that I honestly thought I would never find. Small pieces of hope are very elusive and hard to hold on to when seizures make your seconds, minutes and hours of every day unpredictable. When the only guarantee that life offers is that a seizure will, at some unknown time, knock your body to the ground life can be pretty hard to live. Hope slowly slips away and creates a void, an emptiness and a loss of normality.
Charley fought seizures for 24 years. When the only option he had to continue the fight was having his left temporal lobe removed he plowed through having surgery determined to beat the monster that had overtaken his life. Charley’s story is the message of hope and perseverance that I shared with everyone I met in California last year. The experience I gained from being Charley’s caretaker was validated by people who understood how hard my journey must have been.
The day after the expo Bobby and I practically ran to and through the gates of Disneyland anxious to begin our day of fun. We had no idea how many people who have epilepsy would be at Disneyland but soon found we were members of the purple shirt gang. People we had met the day before hugged us and treated us like family. They thanked us for being a part of their world, if only for a day. We listened and laughed as others told us funny stories about their family or friends who “did not get it” concerning epilepsy. Disneyland was another great day.
If you are dealing with seizures and considering attending the Epilepsy Awareness Expo but have not decided one way or the other please don’t let the opportunity to be a part of this wonderful event pass you by. If you are worried about having a seizure while at the event there are plenty of people, including myself, who will do our best to catch you if you fall and help you. If you think you could not possibly enjoy the event or leave feeling any different than you did when you arrived at least give those of us attending as Epilepsy Advocates a chance to lift you up with our knowledge and understanding.
Soon November, 2016 will be here. I am looking forward to attending mine and Bobby’s second Epilepsy Awareness Day. I hope to meet many of the friends I made through writing Epilepsy Unveiled and reconnect with the people I met last year. Mark the day on your calendar and if there is any way possible please try to attend. If you are dealing with epilepsy in any way it is important to know you are not alone.
Lola Jines-Burritt
