Ashana
Ever since she was a little she was a sweet girl. With a bright, innocent smile and an enthusiasm that can be hard to find in my own apathetic soul.
Some of the scariest times are the times I don’t remember or don’t know. When she and I were little, someone tried to call Child Protective Services on us. That they would take her away is horrifying. They don’t know her. They don’t know us. How--why in the world do they think they’d know how to treat her better than we do when they don’t know her or us?
A conflict of beliefs is a dangerous thing. She’s homeschooled and isn’t injected with chemical drugs--it’s controversal and many believe that it’s going in the wrong direction. But we’ve found our way to help her. She has improved so much.
She has epilepsy. Or, that’s what my parents and friends call it. It’s nothing I’ve seen in anyone else. Her epileptic moments are small, quick, and occurs often. For most, they have seizures that are big and dangerous, dangerous enough to put them at risk--just this last summer my cousin was nearly died from having a seizure while driving. But, though they are dangerous, they are rare. Anywhere from weeks to years can pass before another epileptic episode.
The longest she’s gone without and episode was a few hours, I think. When she’s sick and can’t focus, it’ll happen every few seconds.
What happens is that she has a short blackout. She doesn’t know it happens. She’ll pause mid-sentence and her eyes will flutter as she’s gone for a second.
Because of this, she has a severe learning disability. While she can and will have the focus to sit down and do one thing for hours, much like myself, she has a hard time doing things outside her comfort zone, that is something she views as hard, or is something she simply doesn’t want to do. Her one-minded focus can produce a dangerous backlash that is almost like a withdrawal when my family’s forced to take away the thing she is focused on: manga, books, games, and movies.
As I see it, her learning disability is more from that she hasn’t lived half her life. When she was a young child, her epilepsy was terrible. Looking at her now, she has the disposition of a sweet ten-year-old who, like many pre-teens, can get sucked into what they’re doing and when pushed away to do chores resorts to throwing a tantrum.
She turns twenty years old in August. Her epilepsy has faded over the years as we learn the tricks to turning it around. We love her and I despise anyone who thinks they know better. No one knows better. No one. So just let her be with the family who loves and accepts her.
It’s scary, knowing someone tried to take her, my loving, sweet older sister away from me. But now she’s a legal adult and those fears have lessened. New ones crop up in the night as I listen to her toss and turn in her bed. These regard what the future holds for her and the pain she goes through.
I had never deeply considered if she views herself in a negative light until I figured out that This Is Me from The Greatest Showman is her favorite song. We had always been sure to press certain terms on her. “Different” and “special.”
But This Is Me is her favorite song. For those who don’t know, the song is sung by a bearded woman in the musical, singing about that despite she’s seen as a freak and different, she is who she is and she will no longer let anyone bring her down because of it.
Learning this little fact set my thoughts in motion and put things in a new perspective that I hope isn’t true.
My sister does gymnastics, as I do. In the past year she has improved so much and I can’t begin to explain how proud I am of her.
But she still learns things a bit slower than anyone else.
Our gymnastics coaches, for their own sake, organize lines by level order. In this way, it makes it easier for them to keep track of who’s learning what. My sister is at the front of the line: the lowest level. When someone new comes in and steps in front of her is a moment she can’t help but feel happy about.
Inevitably, that same new person will improve a bit faster and step behind my sister.
Little moments like these are constant reminders that she isn’t as quick as everyone else. That moment when her face falls and turns sort of blank makes me so sad. It makes me fear she’ll give up on the world and learning things that have given her joy.
Then is the fear of what the future may bring. The “what-if’s” and the “when’s” and the “how’s.” There are moments when I want to cry, “Why her?” Because she should have so much more.
I love her. She is a wonderful person who is loving and caring. I’m not one who likes using “deserve” since it’s biased and life is only as fair as you make it to be and the world isn’t fair, but I hate how nature pushed her back and gave her less opportunities than everyone else. She didn’t deserve this.
These fears consume can consume me on those dark nights. So, I try not to think about it. I try not to think about how unfair her biology is nor how lucky she is to have a supportive community. Either way, it makes me think, for one thought leads to another.
She’s my sister. She is who she is. “Different” wasn’t something I had really viewed her as for a long time. She was just my sister and she shall continue to being just that.
My sister.