Seena was diagnosed before my earliest memories. There is no before, only after. My mother knew long before the neurologist came along that he wasn't developing like me. I would't know. I don't remember his first steps, but I do have vague memories of his early words. That wasn't until he was six.
If I pick apart knowledge which is the foundation of my understanding of my brother, it comes down to this: my brother would not be himself without autism.
In college, someone expressed their condolences at my brother's diagnosis. Out of all of the reactions people have, this is the one that most disturbs me. For most of my life, I'd been in this youthful mindset that his autism was, if anything, a blessing. I was a child, and my experiences in autism had taught me key characteristics like patience, kindness, empathy. Many individuals on the spectrum find this fetishizing--and using phrases like "inspiration porn," using disabled people's labor and life stories as a way to "better" ourselves, I can see why.
I digress. It is difficult to balance knowing that my brother has a rich and full life with the knowledge that he will never have the opportunities I do. And that, to me, is where the tragedy lies. It is not that autism itself is devastating, it is that the neural dysfunctions, societal stigma, and societal rejection remove opportunities.
Autism isn't what destroys lives. Some characteristics of more classical forms of autism make things difficult, sure. But the problem really lies in society's inability to give individuals on the spectrum a meaningful space.
When I was in seventh grade, I decided I would wrote a book called You're Not Alone. I was battling puberty with deep loneliness and the beginnings of my depression. What I was looking for was something that might guide my complex feelings about the world around me with the desire for my parents' attention and the guilt of knowing that my brother needed it more.
I wanted, and could not find, stories of siblings like me, who fought the desire for their parents' energy with self-hatred, self-worthlesness, who decided to put the worth of their autistic sibling--and therefore, the world--before themselves. Those stories don't exist, not as far as I've found. Yet that was my narrative for years, and I'm still fighting the influence of it.
It's a form of survivor's guilt, I suppose, knowing that I will be able to do things that he never will. I went to college and graduate school. I got married. One day, I might have children. I'll handle our parents' last wishes, take care of them in their last days. Maybe my guilt is also a way to combat the knowledge that, like an only child, I'm the only one my parents can rely on at the end of the day.
My parents have had a lot of struggles in their lives. They're living the real American dream, as so many immigrants are: my dad came here for college, and got his PhD at 23; my mother fled the Revolution after a rough childhood, went to college, watched her brother die. For them to navigate the world with a classically autistic child seemed unfair to me, when I was growing up.
I wanted to remove the burden of care, the desires for them to live just one day more than Seena. I wanted them to live the life they've fought to have and to dedicate myself to him. It's taken me years to realize how naive that is, how I can never remove the worries they have that my brother is living his best life. In a world where I can cover any finances necessary for his care, they still would be his parents. They'd still care.
When I was a child, I had a severe martyr complex. My life was worthless if it wasn't dedicated to my brother. My life was worthless if I wasn't doing something to help families like mine.
If I leave my program and don't turn back, am I failing him? Am I giving up on the dreams I once had, of convincing parents that it isn't your fault and explaining to siblings you're not alone? Am I giving up on my lifelong belief that my purpose in life is to make sure Seena has a good future?
Am I avoiding answering these questions, because moving past them means I have to learn who I really am?
If you'd like to support me financially, I do have a Patreon page that I've recently revamped (with great new patron levels!). I will be officially re-launching the Patreon starting in January. Literally every patron counts and means so much to me. In the new year, you'll have access to a short story that's in-progress and hear me talk about the process of writing it!
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