I can clearly remember sitting at the kitchen table in my tee shirt & shorts that warm afternoon as Grandmother cooked. I recall sitting down in her chair, instead of my usual spot on the opposite side of the table. I was hungry and could hardly wait for her delicious cooking. I was laying on a gurney and they were telling me that I had to go to the hospital. I did not want to go to the hospital, I wanted to go to the football game! My mother was suddenly there and she & Grandmother were staring at me with fear in their eyes. I kept begging the men to leave me alone; I pleaded with my mother not to let them take me away. I could not understand what was happening, or why I could not form the words I needed, or where the time had disappeared. I began crying helplessly out of profound fear. I was so scared, and so weak.
The preceding paragraph is an accurate representation of the disjointed experience for me of having a seizure. Life seems normal, and then it is altered forever. It has always amused me that I recall little things up until the start of a brain seizure, and then I simply lose time. As horrifying as it is to realize one's body can fail without warning, the hardest part for me was always the memory loss. I pride myself on recalling precise details and having a good vocabulary. My experiences with brain seizures is that they rob me of both of these things. A seizure renders me alone, scared, without words, and outside of the normal human experience of those around me. It has taken me a very long time to have any kind of acceptance or peace with this reality of my world.
As a teenager, I had another diagnosed seizure at 16, and then went on a medication which I detested. I took it faithfully for two years, and then blissfully went off of it as my neurologist said those two experiences were likely anomalies. I went off to university, sure that these experiences were just terrible memories. When I filled out my college medical paperwork, one of the questions was "do you have epilepsy?" I checked the box labelled NO without hesitation. After all, society made fun of epileptics. They were oddities who could not control themselves. I was certainly not going to be ridiculed as a weak person. Then, at the end of my freshman year of college, I had a major seizure which caused me to stop breathing. I was incredibly fortunate that my college roommate was with me, and she knew CPR. I can recall that we went to brunch at the dining hall that Sunday morning, and then returned to our room to study. She later told me that I suddenly sat up on my bed where I was reading and looked at her strangely, and then fell back and began turning blue.
After this experience, I was put on Depakote, which became a wonder drug for me. It allowed me to go through life without worrying about having a seizure, worrying about my body failing me, worrying about people ridiculing me. Society can be very judgmental on those of us with physical disorders -- which is funny since every single one of us has something. After seventeen years of being on Depakote, however, my life changed and it became clear that I needed to transition. Thanks to the doctors at the Cleveland Clinic, I was able to stop taking the Depakote. I had no idea that when I stopped taking medication, that was the start of a new journey of learning how my neurological system operated. For my whole adult life, the drug had worked the wonder of masking all my symptoms. Without it, I encountered an array of physical issues and I experienced more seizures.
I slowly learned that what I thought were annoying tics and muscle issues and painful migraines were actually the warning signs that my body used to tell me when my neurological system was struggling. It is my new normal, and I have learned to take comfort that my body tells me when something is wrong. Since I have brain seizures, they do not manifest as typical seizures. Instead, it appears that I simply faint. As a child, I often fainted. I now suspect that these were brief seizures. My grandmother's younger sister had epilepsy, but Grandmother had no idea I was experiencing a seizure on that Friday night so long ago when I was 15, because I simply fell off my chair and became unresponsive. Now I know that it is my body giving off warning signs when I begin to experience tics in my face, when my muscles feel so heavy it is hard to function, and when the inside of my head becomes a painful maze of fog. I understand now that my body has not failed -- rather, my body & my mind are trying to function together to the best of their ability despite any & all challenges.
My last recent seizures were on my birthday and on Thanksgiving in 2015. Since then I have successfully been able to care for myself so that I do not reach the point where my body experiences a seizure. I have stopped hating my body for failing me, and started accepting that everybody has something. I have stopped detesting the warning signs my body experiences, and started embracing that my body tells me when it needs more care. But the most important part of this is that I have stopped hiding the reality of my experience, and telling more people that I have epilepsy. That I am fortunate enough to have epilepsy. How tremendously boring it must be for those of you who wake up every morning without wondering what level of functionality your body will have that day! For me and for others with neurological conditions, it is a surprise every day. And I am now at peace with that.
I still do not find it easy to discuss my neurological condition with others. The reason I am doing so now is not for my own benefit, but because of a meme. A silly, inaccurate meme that really has no impact on me -- but could impact others. Recently I saw a shared meme that was attempting to portray Hilary Clinton as weak, and mocked her for taking a weekend off to rest because she "has seizures and wears diapers". I have some policy disagreements with Secretary Clinton, thus this is not an endorsement of her as a candidate. It is, however, a powerful indictment of anyone who wants to portray a woman as weak because she might have seizures. I like to think of myself as quite a badass in most situations, yet there are many times that I have to force myself to rest in an effort to care for my mind & my body. I do not know if Secretary Clinton actually has seizures, but if she does then she has become a much stronger & more interesting person in my mind. And I want to correct the perception that seizures equal weakness.
Memes can be funny things, and are far too easy to share. I know the person who shared the meme that has stuck in my craw did not share it to hurt me in any way. In fact, that person is one of my all-time favorite & most supportive friends -- which illustrates to me that as a society we have a problem censoring ourselves when appropriate. I have no doubt that if this friend had considered how such a meme could impact me, the "share" button would never have been hit. So I am asking you, my friends, to truly think before sharing a meme . . . Have you verified the "facts" contained? Does it make you a better person to disparage another human being? Could you be inadvertently hurting through this meme someone who truly loves you? I wish I could restrict all memes to feature only adorable cats, funny goats, Downton Abbey, and Ron Swanson. In lieu of this, I am asking you to be my missionaries for a polite society, for a kind world -- only share in any circumstance what you know to be true, and only put into this world what will truly make it better.
You see, this does not so much matter for me. I have spent many years on my journey with seizures. I know how to care for my body, and I am far too stubborn & independent to be hurt by a silly meme. But there are many young people who are just starting down their road with seizures, and such a silly meme could hurt their young hearts. It could make them feel they are less of a person because they have epilepsy. It could set them up for the same experience I had as a teenager of always feeling ashamed when jokes were made about epileptics. I could not bear for such a thing to happen to a young person, and so I wanted to share my story. Even more important, there are many young people who do not have epilepsy who could see such a meme -- and view it as justification to make fun of those who do. After all, if it is okay for an adult to make fun of someone with seizures, a young person can easily make the leap that it is okay for them to make fun of someone with epilepsy as well . . . Or cancer, or diabetes, or a mental illness, or a physical handicap. This is not okay, and only the adults have the capacity to stop this.
If you have made it all the way through my post, you are a good friend, and I know you will be a guardian of the young minds around you and a missionary for a better society. My request of you is that when you meet a person who has seizures -- whether from epilepsy or from a brain tumor or from another situation -- that you be ready to say to them, "You have seizures? Wow, that is a really interesting fact about you. You must be a tremendously strong and fascinating person from experiencing those. A goatherd I know once told me on great authority that seizures are the result of a brain that is far too powerful for a normal body and thus needs to re-boot from time to time like a supercomputer." Those words could change the life of a person you meet who struggles to accept their own physical challenges -- whether it is a young person or even Hilary Clinton. And I will always maintain that having a physical challenge makes you far stronger and far more of a badass than anyone who creates memes.