It’s amazing how much a stranger can affect your life. I never met Alyssa O’Neill. She died too young, too soon. Yet she’s meant so much to me. It’s hard to put it into words. It feels like she was my little sister, my daughter, or myself. She could have been any of those. Seizures took her away from the world far too soon. She was only 18. I hope to meet her parents someday. I want to hug her mom, Sarah, like she was my best friend. Their tragic loss has brought so much pain and meaning into my life. I didn’t have to know Alyssa to know her struggles. She shared mine. I wish I could have met her in real life, but her memory will live in my heart forever. You never can tell who will change your life. Even people you never meet.
In an online world of strangers and anonymous tweets, I have found so much friendship in people who do not know me and yet know me completely at the same time. Anyone whose life has been touched by the cold grasp of epilepsy knows. Strangers have become united with me, bound by our secret fear. We are suddenly like family. They understand me. I understand them. Seizures steal away everything and then come back for more.
Alyssa’s story is sadly not unique. 50,000 other people will be lost to seizures this year alone. Every single time I hear of someone dying from a seizure, I cry. I cry uncontrollably with tears and snot streaming down my face. Even people that have been dead for years, that I never knew, when I hear about it, I cry. I don’t have to know them to feel their loss keenly. It’s such a shitty way to die, to leave the world screaming and shaking. It is terrifying. Whenever I hear that somebody had a seizure, I feel pain for them. Living with a disease that is so misunderstood, it’s like we have a secret seizure club.
The un-anointed don’t even know that they don’t know. If you’ve never had a seizure, if nobody you love ever has, good for you, bless your soul. You just don’t know the depth of it, you can’t know. And that’s okay. I do not wish the price of knowing on anybody. It’s not the kind of secret club that you want to get into. Woe is us who know the true power of a single seizure, a single lost second.
Those who have seizures, and those who love us, know what the rest of the world can’t see. We live in a cage, trapped by our misfiring brains. Not all rapid misfiring of brain neurons can be seen. And the mountain of fear they leave behind is invisible. Oh the fear! There is not a word in the English language that describes the dread of having a seizure. I searched online and came up with a German phrase “to fear for one’s mortal life: Um sein Leben Bangen.” It sounded right. My moral fear does involve banging my head. That fear has never once left my side since 1997 when I woke up in an ER and was told I just had a seizure. Not once.
Recently I came across this meme, by Epilepsy Nation:
It is so true. I have envisioned my epilepsy like a war, a ball and chain, a tornado, a thunderstorm and lightning. I never thought of it as a stalker before. But that’s exactly what it is. Epilepsy stalks me. I take precautions against stalkers and seizures the same way; I don’t go out at night alone. I close the curtains tight. I warn other people to be on the lookout for me. “Hey, if I have a seizure today…”
There is still a huge stigma against epilepsy. It binds those of us who share the scarlet letter together. Epilepsy is a black cord that ties us, the more we struggle, the tighter the bonds become. Epilepsy is a struggle every day. The only way we can get out of it is to work together. We need more epilepsy awareness! We need more epilepsy research!
Epilepsy has been described in medical texts for thousands of years. It was called “The Sacred Disease” by Hippocrates in the 5th Century BC. The oldest reference to epilepsy was found in Babylonian cuneiform dating back to 1067 BC. So why haven’t we figured it out yet? Why don’t people even take it seriously yet? Funding for epilepsy research lags far behind. Epilepsy doesn’t even get its own category of funding from the government. It gets grouped into other neurological disorders.
Epilepsy isn’t just one thing; it’s a multifaceted spectrum disorder with over 40 types of seizures, with countless causes. Some people have seizures because of traumatic brain injuries or tumors. My brain is just wired completely wrong. It looks okay, but it doesn’t work okay. They have barely started to map the genetic basis to my epilepsy. Could the key to electrical overstimulation lurk in my genetic code? Who knows?! And with the current levels of research, I fear I’ll never see an end to my seizures. Not until they kill me. I live with that fear every day. The first rule of Fear Club, is we HAVE to Talk About It!
Please. Don’t let more people like Alyssa die. It can happen to any of us, at any time. You cannot predict a seizure. Please Pay It Forward for her and all of the 50 million people worldwide who suffer in mortal fear of our daily lives. Not one more second lost to seizures.
Fund Epilepsy Research!
Dear Sarah and Jason O’Neill, Thank you for all your hard work. Every day more people are talking about Alyssa and Epilepsy. That is a gift to us all.