this is about pain.
Brian was sweet and brought home a copy of the New York Times because it had an article about the siblings of autistic kids on the front page.
http://www.nytimes.com/2004/12/10/health/10siblings.html
This article wrenched me up and made me cry. It threatened to open a door that I’ve got locked up, boarded and barricaded, and I just don’t know if I can handle that door being opened. This part hit me the hardest:
The goal of teaching Andrew to play Uno was Jeffrey’s pleasure. But that does not mean the younger boy is free of responsibilities unusual for his age. When the two brothers visit their grandparents, for example, Jeffrey is a translator. He is the one who can tell whether Andrew is trying to say “juice” or “cheese” and also can distinguish a “fake” cry, which is best ignored, from a real one that requires adult attention.
Dr. Bridget A. Taylor, one of the founders of Alpine, Andrew’s school, said that younger siblings like Jeffrey “don’t know anything different” and thus slide naturally into an adult role. They are also so attuned to their parents’ stress and heartache, Dr. Taylor said, that they hide their own feelings and “walk around like everything is fine and dandy.”
But it’s not. Things are not fine and dandy. Those of you who have siblings like this know what I’m talking about. All that you carry inside that no one in the world knows about, that you have no voice for, that you can’t even talk to yourself about because you feel like an evil, evil human being when you do. You have no voice to talk about the war zone that home can be, when you have an unpredictable sibling who needs so much, when frustration starts tearing at your parents’ marriage, when they themselves become rageful and volatile.
There’s really no way and with no one to talk about these complex experiences. What it’s like in a house that has this element. You’re obligated by responsibility to people, to protect people on one side while feeling like a horrible selfish person for having any inkling of resentment on the other, so that there’s no way to feel anything or confront anything. You just lose your voice and your memory just trying to bring anything up to your consciousness. It’s a feeling of drowning from the inside, whenever I try to dissect what happened between the ages of 8 (when we started realizing something was wrong with my brother) and 18 (when I left home and had the chance to find myself). And it’s true. I can’t remember. I can’t remember most of what life was like between those ages. Near-total amnesia. Sleepwalking. A long blank that could have been filled with anything. Or maybe nothing. Like trying to piece together my past with faded photographs that may as well have belonged to someone else, of someone else’s life.
The article takes an interesting angle but doesn’t dig deep enough into the experience of these siblings. It doesn’t talk about how, once you’re supposedly “your own person,” your identity and experience of the world are still forever tied to that complex web of responsibility and emotion and amorphous guilt, and at any moment, the universe could call upon you for complete, total self-sacrifice, which you will give without a second thought. Because it’s everything you’ve come from and all you know. It doesn’t talk about how it’s always somewhere in the back of your mind, that listening, that waiting for the phone to ring, because there is always an emergency right around the corner. And when things are too quiet, it just means something very, very bad is about to happen.
Because when you live with something so unpredictable and volatile during your formative years, you’re always on call. And if you aren’t prepared to jump into action and something disastrous happens, you will destroy yourself with blame. And if there’s anything you fear more than death and physical torture, it’s those nights alone when all you can do is blame yourself and tear yourself apart.
[The sibling] became animated only when the conversation turned to people who tease or stare at her brother. “I give them an extra dirty look with a swear or two.”
The article alludes to it but it doesn’t mention the rage and guilt the siblings feel towards a cruel world where people don’t understand their autistic brother or sister. Where people aren’t tolerant of the person they desperately try to shelter. The article doesn’t talk about the complex issues the sibling hides from the world that stem from the repressed rage at the people who say and do the most cruel, ignorant, hurtful things to their helpless brother or sister, these people who terrorize the very ones they’re trying to protect, and their impotence to fully protect them. The siblings are terrified that they may be capable of enacting the violence against these people that their minds obsessively envision, this rage screaming inside their heads, demanding that the offenders be made to feel what it is to be on the other side, helpless victims, so that they can understand. They wonder if they are monsters for having these thoughts, and worry that if they are found out, they will be locked up. But truth is that these siblings are equally helpless, too cowardly to avenge these wrongs. So this rage turns on them, tearing them up from the inside for their lack of strength, so disgusting, their impotence as human beings.
If you ask me if I know what hate is, I’ll tell you. I do. Oh, I really do. It’s the taste in my mouth every time I see intolerance in someone else’s eyes. It’s what I feel towards myself every time I think about just how cruel people and this world can be. And how there’s very little I can do to change it. To neutralize it. It’s like trying to stop the blood from flowing out of the mortal wound of someone you love, but you can’t because your little kid hands just aren’t big enough. The way you fail just by being what you are. Human.
My pronouns are all messed up here because this is not a subject I have ever really gone into as it’s not an easy subject nor one I have a good grasp on. There have been so many studies done on how divorce affects children and their ability to commit to relationships and lead anxiety-free lives, but I would love to see a study on siblings of autistic kids. I think they’ll find a high prevalence of Post Traumatic Stress Disorder among this group as well.
“I keep it all to myself,” [the sibling] added. “But when I can’t keep it in any more, I just sit in my room and cry for hours. If my parents catch me crying, I just say hormones kicked in and sometimes that’s true.”
Yes, there’s a lot of that. Endless expanses of loneliness and feelings of isolation. Sometimes, you don’t even know that you’re sad. Until you’re already crying. And even then, you don’t know why.