How Positivity Has Guided Me Through 40 Years With Epilepsy
I have lived with epilepsy from an early age. I do all I can to lead a happy life. I am not sure where my trust came from, but I feel grateful, as my trust and gratitude are what gave me the strength to create my life despite epilepsy.
When I was diagnosed in the late 1960s, not as much was known about epilepsy and its treatment. Many tests and the more advanced research of today weren’t available. The doctors told my parents I had irregular brain waves and they thought I had epilepsy. It took several months to confirm it. Medication choices were limited and came with substantial side effects, but I had to take them. Missing multiple days of school each year due to the side effects was hard.
Given the lack of information about seizures, very little was said in my experience. I never talked about it in school or with my friends, and even some family members did not know. My greatest gift each day was spending time with the family’s golden retrievers, whether I was playing with them or they were curled up with me. When I had a seizure, they just seemed to know what to do. I felt so grateful for them.
When I would have a seizure, my mother would understandably get anxious, which was hard for me. Over they years, I did different things to prevent this. My need to hide my seizures was partially from the general fear and lack of understanding of epilepsy. I felt embarrassed to be seen having a seizure, which is not something I could do anything about. I thought I would be laughed at, punished or ridiculed for it. I would try to create space by walking away from others. Over time, I learned to trust that things would be OK.
Somewhere along my journey, I came to see I may feel shame or embarrassment, but I did not need to hide. Some medical conditions, like epilepsy, are not always noticeable from the outside. These are the conditions we need to educate others about. Otherwise there may always be fear or stigma around them. The more education there is, the better understanding and acceptance of these conditions there will be.
Don’t get me wrong — it is not always easy, especially when my type of epilepsy is intractable, meaning my seizures will never be 100 percent controlled by medications. So on some level, I am always wondering when the next seizure will happen — yet I choose not to let it rule my life! I feel grateful that I have learned to make the best of every day. There were and still are times when I think “I am my epilepsy,” and it usually takes my very best friend to remind me, “No, your epilepsy is not who you are” and “You are much more than epilepsy.”
It is very possible for someone with epilepsy to be in a loving relationship. I was gifted with that. We can find work that helps us feel independent. I have had epilepsy for over 40 years and have a home, relationships, do fun things and go on vacations. The supportive relationships we create help us trust and believe we are good people. This is vital and a true gift!
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