Epilepsy hits close to home with me. While I, myself, am not individual who triumphs over epilepsy, there are two little boys who hold my heart, that have faced countless,sometimes daily battles with epilepsy and this article is for them.
The reality of epilepsy is a stigma of fear and misunderstanding. People are scared of epilepsy; they are scared of witnessing someone have a seizure and of being involved because they are scared of what could happen. Society needs to get rid of this stigma around epilepsy and take a moment to truly understand the truth of what epilepsy is and what the reality of epilepsy is for the hundreds of people living with it daily. The first step to dispel the stigma surrounding epilepsy is to educate those who are scared or misunderstand what epilepsy actually is.
The first step to dispel the stigma surrounding epilepsy, is to educate those who are Epilepsy, also referred to as a “seizure disorder” is common occurrence in today’s world. One in 26 individuals will develop epilepsy in their lifetime. There are approximately 150,000 new documented cases of epilepsy in the United States each year, with about 50,000 of those cases will be children diagnosed with epilepsy. Seizures are curious thing, that can basically be described as neurons over-firing to stimuli. A seizure is a sudden surge of electricity in the brain due to complex chemical changes that can occur in nerve cells.Seizures are not a disease in themselves; they are simply a symptom of many different disorders in the brain.
Epilepsy, to me, is a whole jumble of emotions wrapped up as a blessing in a really elaborate disguise. Epilepsy has taught me patience and to never take things for granted. I have learned to enjoy all of the little things in life, to cherish each memory I make. I know epilepsy as a celebration of smiles and firsts, but as heartbreak as well. Over a year ago I said goodbye to part of my family as they moved to Colorado due to inadequate health care in New York. I have watched and cheered, from afar, as Jaimison learned to walk after doctors said he may never learn. I celebrated Jaimison being one year seizure free, only to end up hating epilepsy two months later when he was hospitalized for his first seizure in 14 months. In the past two months I have cried, both tears of joy and of sadness, as I learned that Jaxon regained the ability to smile only to learn that epilepsy once again chose to take it away from him.
I have held my boyfriend tightly, trying to reassure him that everything will be fine, as he struggles with the news that one of his nephews has been hospitalized again due to their seizures or that the idea of surgery for one of the twins is being entertained. I have watched and rewatched countless videos of Jaimison learning sign language, of him learning new words, of him joining a soccer team created especially for children with specials needs, and I have wondered over and over again, when the day will come that I will watch a video of Jaxon defying epilepsy and all the doctors said he can't. The best birthday gift that I received this year, and my favorite, was a video of Jaxon that showed him smiling and laughing so take that epilepsy.
Despite all of the hardships these little warriors have been through, they will always stay strong and will always pick themselves back up again. They have a loving, caring, and supporting family that will always be there for them, as well as a devoted community that is willing to help and understands what it’s like to live with epilepsy. With continued support, we can- together- raise epilepsy awareness around the world and give it the attention it deserves. November is Epilepsy Awareness Month and I encourage you all to wear purple at least once in November, simply to support Epilepsy Awareness and all of its brave warriors.
