13 May

My parents read to me every day. They helped me with my homework when I needed it. They spent countless hours chauffering me to and from different activities. When I was curious about something, they helped me learn more. They sent me to summer camps. They did everything they were supposed to do.

And I ended up here, in the honors program of a private four-year liberal arts university. I’m pretty close to supporting myself financially, and I don’t make very many stupid decisions. Basically, I’ve gotten where parents want their kids to get.

They’ve done all the same things for my brother. Even more so, because he’s always needed them more than I did. He’s a junior in high school now, but he’s not going to end up where I am.

That’s not my parents’ fault. It’s not his fault. And even though it’s not my fault, I feel guilty. Before he was born, some wire, somewhere, got crossed. And he came out, well, different.

When someone asks me to explain my brother, I can’t do it. There are so many facets of him that it’s impossible to describe. He’s violent one minute, threatening to kill himself or other members of our family. Half an hour later, he’s sweet, cuddling up to my mom like a preschooler would. He’s endlessly lazy, but a big dreamer. He loves to read but writes years behind his grade level. He’s obsessive. He’s threatening. He’s got the most beautiful smile in the world. He’s angry. He’s “a pleasure to have in class.” He’s annoying and a sore loser. Yeah, we have a diagnosis for him, but it doesn’t quite fit. That doesn’t matter. My brother is a person, not a disease.

Oh, and then there are the stereotypes about his disease. “It’s a kind of autism,” I tell people. “Oh, so he’s really smart? Like super good at math or something?” No. No he’s not. He’s not super good at math or music or chess or ANYTHING. He can’t comprehend things the way most people can. This disease has crippled him both academically and socially. I’ve talked to people with learning disabilities who have called it “a blessing and a curse.” It’s forced them to figure out different ways to learn, and made them stronger people. I have no doubt about that. But just because that’s the way it is for some people, doesn’t mean it’s that way for all people. I would give anything in the world to make him better, make him normal.

That doesn’t mean I don’t love him the way he is. I love him with everything I have. I would do absolutely anything for him. I love him enough to wish he could live the life he wishes he could live. A life he’s not going to get to have, because of some genetic mix-up.

I wish, almost every day, that I could have gotten the chance to meet the person my brother was supposed to be. I wish I could meet the boy – the man – that he was supposed to turn into. I want to know what he would have been able to do. And I know he wants to know too. He wants to be a chef. Or an artist. Or a video game designer. Or a guitar player. All we’re hoping for is that he will eventually be able to live on his own.

His isn’t a disability you see at first glance. He looks perfectly normal. Sometimes, you can interact with him and he’ll seem perfectly normal, especially to strangers, when he’s on his guard. Sometimes, in some ways, I think that makes it harder. Kids who would be nothing but respectful to a kid in a wheelchair, or a kid with Down’s Syndrome, have no problem bullying “the weird kid.” The one who feels so invisible he’ll do anything to get someone to pay him attention. They can take advantage of that, laughing and teasing, but he can’t even tell the difference until it’s gone too far.

But maybe the worst thing about this “mild” disability is that he knows. He knows exactly what he’s missing out on. He knows there’s something not-quite-right. Something that stops him from being able to be the person he wishes he was.

We don’t lie to him about that. He’s too old now for us to pretend: it’s time to start talking about what happens when he finishes high school, and that’s not, “fly to Italy and learn how to be a chef.” Not when he can barely get himself dressed in the morning. He knows he’s different, and he wishes he wasn’t. He asks, “why did this happen to me?” through fits of tears – usually after he’s had one of his “freakouts.”

Oh, a freakout? They’re usually inexplicable. Maybe Mom said no to a second dessert. Or his pencil broke. But it turns into a swearing, pushing, screaming. chasing, hitting, yelling, hiding, running mess. I can’t describe a freakout in a way most people would understand. They don’t happen in most families. Imagine the worst toddler’s temper tantrum you’ve ever seen. Now make that toddler more violent and a teenage boy. They usually last about half an hour. And when they’re over, we’re all a mess of red faces and tears. Tears of anger and confusion and fear. And he’s asking, “Why? Why am I like this?? Why did this happen to me???” We don’t know. No one knows. There’s no good reason for this.

That’s what kills me. People like to say, “Everything happens for a reason.” As if that helps. I can’t accept that. I can’t accept that this is anything but a horrible twist of fate. Have I learned from it? Grown from it? Have my family members? Absolutely. Yes. But that is no excuse for him not having the abilities to live his dreams. The “spiritual growth” of a few people is not worth the destruction of the myriad possibilities of one.

And then there’s me. He’s jealous. Because I’m here. Because I get good grades. Because I’m independent. Because I have friends. Because when I try something, I expect to succeed. Sometimes I fail, of course. But failure’s not my default setting, like it is for him. Because I have a job. Because I get to travel. Because I have a driver’s license (he’s 17 1/2 and it’s not even close to a possibility). Because “Mom and Dad love you more!”

Have I worked hard to get where I am today? Sure. And I’m proud of that. But I know that it was nothing but luck that put me in a position to get here. I’m not talking about being born in the right time period, or country, or to a loving family. I’m talking about the fact that I was born into this world with all my genes in line, and my brother wasn’t.

For that, I feel guilty. Every time I complain about writing a paper or taking a final, I feel guilty for complaining about the university education he’s not going to get. When I hate the idea of cleaning my room, I feel guilty because I’m 21 and live in a house that I rent with no input from my parents – there’s no way he’s going to get there in four years. When I’m annoyed with a friend for showing up late, I feel guilty because at least I have friends, people who care about me enough to make plans and follow through on them.

So then I try to do everything. I take the classes and have fun and work and do everything I can to live and enjoy this life to the fullest, because I get to have it.

It’s like cleaning your plate because there are starving kids in Africa, except the plate is my life and the starving kids are my brother. My infuriating, adorable, hateful, sweet, terrifying, incomprehensible little brother.


One Response to “Guilty”

  1. ianmulligan08 October 1, 2013 at 3:51 am #

    A remarkable post that is incredibly honest and heart felt. You display your emotion and how you feel. It always strikes a chord with me when you talk about him. Not everything happens for a reason and we cannot accept that notion. He has one heck of a smile and a loving sister that will always be there for him.

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