Guest Post: An Iota of Visibility

Most people don't know that I have seizure disorder. I can walk in a (quote-unquote) "normal" way and talk in a "normal" way. I can respond to social cues. When I inform people that I have a disability, they say things like "You're not in a wheelchair; you can't be disabled," or "My cousin is blind. Whatever you have isn't so bad."

I'm not wheelchair-bound and I'm not blind, thank goodness. But I do deal with seizures every single day of my life.

I get small "absence" seizures that last 1-3 seconds long. If I'm standing under bright light (like a florescent lightbulb or the sunlight), the seizures will repeat over and over. Trying to focus when this happens feels chaotic and disorienting, like trying to read while being in a wavepool. I'll slur my speech and blink my eyes rapidly. I cannot get tasks done. I'll lose my place in a conversation, forgetting what I had just said, or what has just been said to me.

I usually stay inside my apartment with the curtains closed. I use soft white incandescent lightbulbs in all my lamps. When I go outside, I wear a hat.

In September of this year I got vagus nerve stimulation (VNS) surgery to try to help with the seizures. Once every five minutes for thirty seconds, the implant sends electric impulses to the vagus nerve, and up to the brain. So far the implant is helping calm the intensity of my seizures, but not the frequency.

I have incision marks on my neck and chest from the VNS surgery. An interesting change since my surgery is that people have stopped making ableist comments. My epilepsy has an iota of visibility now; I feel a lot less judged when I say I have a disability.

Advocating for yourself as a person is hard. Advocating for yourself as a person with a disability is even harder. Sometimes you want to give up and not try at all. And it makes sense, with all the cruelty thrown in your face. People with disabilities are the strongest people out there. We get up every day and face the world, just to live our lives.

Writer bio: 

@omg_a_llama is a thirty-three-year-old recluse who writes every day on Twitter about her experiences with epilepsy, PTSD, and family dysfunction. She enjoys making no-bake cookies, watching celebrity drama channels on YouTube, and petting strangers' dogs. She can usually be found on her living room floor.