Last year I was at an airport check-in with my husband and 18-month-old twin girls. As I tried to stop them from licking our wheelie bag in a fit of toddler anarchy, a boy of 13 walked over to me, took my hands and very sweetly kissed them. He then put his head on my shoulder. I was surprised, but he was lovely and it was a welcome respite.
Embarrassed, his mother ran over. “Jeff is autistic,” she explained to me in a tone that sounded practiced in begging forbearance. “He’s really into kissing people.”
“Nothing to apologize for,” I said. “My brother is autistic, too. ” Then I caught a glimpse of his 15-year-old sister. She met my eyes, then looked down at her Uggs, like she would rather be strip-searched by security than identified as the sister of a brother like that. I could practically hear her thoughts, because they were mine at that age: Oh. My. God. I am so embarrassed! I know he can’t help it, but what about me? For once, could he just be normal? I am going to die. Right now. Not that anyone would notice.
I know that whenever there was a similar incident with my older brother Greg, I had those sorts of treasonous thoughts, they were immediately followed by self recriminating ones: I am such a horrible person. How could I be ashamed of someone who can’t help himself? I know I should love him, but right now I hate him. I wish I could just vanish. Not that anyone would notice.
I didn’t always find him mortifying. When I was three or four and he was eight or nine, before the gap in our development was too wide, we were friends. We’d wake up at the obscene hour that children do and play. We pretended our pillows were siblings called Buddy and Sissy, and made them clobber each other, laughing maniacally all the while. Then we’d have them kiss and hug. This went on for hours.
As we got older, though, Greg remained much the same emotionally. Our conversations were one sided, like a bad date. He didn’t speak much, so I talked about whatever was in my head–Judy Blume novels or my yearning for braces because my best friend had them. When he did talk, it was usually a snippet of a discussion he was having with himself. Over the years, I stopped trying to engage him.
I also attempted to stifle my own resentment. We lived in New York City, and my mom told me to cross the street if I saw someone muttering madly to himself because it meant he was on crack or otherwise dangerous. Except if he were my brother–then I should love him unconditionally, never mind that his needs trumped mine or that most of our family resources were devoted to him. Above all, I was not to complain or have problems, because my parents couldn’t handle it. A bit of this was explicit. (”So you didn’t get invited. At least you have friends, Stephie,” my grandmother once said. “Think about Greg.”) But mostly the no-maintenance mandate was implicit, or it was how I, as a child, assumed I should handle the situation.
Meanwhile, my parents had basically checked out. They were tapped–emotionally, financially and in every other way. Their marriage was tanking, in part because my brother required so much of them. My response was to require less, much less, so that together, my brother and I added up to one normal kid. I was a straight-A plus student, held two jobs, was involved in school activities and volunteered on weekends. By my sophomore year, I was also severely bulimic, and as excellent at hiding it as I was at everything else. Occasionally my parents asked me how I was doing, and I’d just tell them, “Everything’s fine.” And they decided to believe me.
When I was 17 and my brother was placed in a group home and then in an independent living situation in Maine, I felt liberated (then guilty for feeling that way), angry at him for his autism and at my parents for being so preoccupied that they didn’t notice what a mess I was (then guilty for feeling that way), and anxious to go to college where no one knew me (and yes, guilty for that, too.) I had no idea that rage, frustration and jealously were normal feelings for anyone to have, so I simply didn’t let myself feel them. The one kind of person I knew how to be was the no-problem child, the good girl, the model teenager. It was the best way I knew how to fit in, but it was only half of me.
It has taken much thinking and rethinking to untangle all of this, to realize what went wrong and to make peace with my parents and my brother over how our family operated. It has taken me even longer to finally feel OK about being me–sometimes bitchy and uncharitable me–and to realize that I needn’t be superhuman.
Which makes spending time with Greg a lot easier. My husband, daughters and I visit him every summer and he comes to see us for the holidays. He seems to enjoy being around us–he sits and smiles a lot–though he’s largely inscrutable. His emotional life is static, which is wrenchingly sad to witness.
But the fact that I can feel anything other than guilt, anger and shame when I’m with him is a sign that my emotional life is no longer static. For that, I’m grateful. After decades of trying to be the kind of person who never had a reaction that was “wrong,” I realize there’s no such thing. You feel what you feel, even if you’d rather not.
Which is why I talked to the girl in the airport. It broke my heart to see her praying for her own invisibility. So I gestured her aside.
“Listen,” I said. “I know that this is none of my business, but I get it.” She stared at me like I was nuts. I felt a little nuts, but I was moved by what I read on her face when her brother kissed me. “I get it about Jeff. I have a brother like that, and I know how badly it sucks for you, too.” She seemed about to protest, but she looked down instead. “I just mean, it may seem like he’s taking everyone’s time and attention and the world revolves around him and that you don’t even exist. I just want you to know that you do. Even if no one notices for a while.”
She looked up, startled, and then for a brief moment, seemed grateful. “Um, yeah, OK,” she replied. Then she looked away again, like nothing ever bothered her. But I felt better–because I’d finally said out loud what I wish someone had said to me.”
Adapted from The Elephant in the Playroom, edited by Denise Brodey. Copyright 2007 Stephanie Dolgoff. Published by Hudson Street Press/Penguin Group (USA) Inc.