How and when did epilepsy first touch my life? What difference does epilepsy make for me, my family, friends and community?
I was first diagnosed with epilepsy at the age of 10, almost 41 years ago…gran mal seizures. I have been so fortunate that I have been seizure free for over 30 years. Still on medication and still dealing with all the side effects, but it works!! The difference for me in dealing with epilepsy, was that as a child there was limited information made available and I would have seizures at school and as the saying goes “kids can be cruel”. And so can adults, this form of hate and bullying is a cycle that must be broken. As an adult, I do become frustrated with this “chronic worsening illness, due to the fact that people do not understand my condition and restrictions, especially as I get older. The sad part is that most chose not to spend the time to become informed. It is so much easier to ignore me than to “have” to deal with me. To me epilepsy is the “invisible disability”. Until you have a seizure (and it should never come to this) you may just seem a little “off” or “un-attentive”or “lazy”. If one does not understand the symptoms of epilepsy, then these observations are made quickly and without hesitation. At work, awhile back, I was told that I didn’t look like an epileptic”. How do you respond to that? Is there a correct answer? And this was from the HR Director of a billion dollar company. Yes, sometimes, I feel as if I will never get away from this stigma. Comments such as these and worse have made me pray with all my might that at least there is no epilepsy in heaven. What is my greatest challenge in living well with epilepsy and how do I successfully meet the challenge? My greatest challenge would have been being a single parent. I raised my daughter, since age 5, by myself. She is 31 and currently married with a wonderful husband and two precious grandchildren which make up her family. She spent six years serving her county, by way of the Air Force. And yes she was deployed, as most have been. She recently obtained her Master’s Degree. Obviously, I am a very proud parent and am so very happy that I had the strength not to listen to those who insisted I never have children. And to answer your question, no she does not have epilepsy. How I meet the challenges. I must say my parents provided the foundation for that. As a child, although protective but not over- protective, they did not treat me differently than my siblings or other children. They said I could do anything and encouraged me to do so. They never made me feel like I had a disability and I have lived that way all of my life. This has enabled me to overcome most of the obstacles that this disease throws ones way. Others are not so fortunate. Their life is filled with unnecessary hardships and pain. I feel that I, alone, could have filled an ocean with my tears that I have shed due to the “E”. Why are the Epilepsy Organizations so very valuable and important to me? The various organizations allow push for EEO laws, provide counsel if warranted, provide medication, job training and much more. There research to find a cure is not only remarkable but unstoppable. But also they are as very important, as they provide a place where individuals, who have epilepsy may meet with one another. It is a great support, as it is a group of friends with common denominators or problems, if you will. It is a sounding board. A community. A lifeline of information. This is where “my people” are if you would. I am not embarrassed here nor do I feel any shame. I am not made to feel stupid or that my life is unworthy. It is a place which I would hate to ever see disappear…unless, just unless..all our hopes come true. And that maybe, just maybe, one day there will be no need for such organizations. Dreaming the dream ~~ please help to find a cure.
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