I decided that for one of my outcomes for the illustrations in my reflections on my personal relationship with my brother, I should investigate what happened when I put writing on the subject in immediate proximity to the images of the house that I had linocut.
In order to do this, I would have to write. Throughout the project I had been calling my parents to talk about Matthew, but I hadn’t really sat down to archive my own memory. First, I wrote down all of the memories that were associated with the pictures I had unearthed in the iCloud drive and tried to segment memory roughly according to year:
Then, I went through and tried to convey my own thoughts on this process/what I am trying to do by using him as my subject in Investigate:
Last Fridayโs Lecture about memory was significant for me because it made me encounter these things. โpersonal history as a way to encounter storytelling and the brain.
Having a brother like Matthew is probably one of the most important forces in my life. His has been the story that has defined me, but it has been very difficult to tell. Perhaps it isnโt a huge part of my identity when I am not in New Orleans, but I will always be his sister.
It is strange to try and tell the story of what it is to be attached to a brother like Matthew when he is not a part of my story right now. Matthew lives at home in New Orleans, and we have lived apart for some years. There is a narrative guilt to the flavor that he gives my perspective and to the exoticized metaphorical interpretation of how I think his brain works. Am I using him for the story? Capitalizing on him.
The older I get, the more I see the shells of his diagnosis in us, all of us: the members of his family, but that is exactly the problem. In an attempt to tell the story of people with autism, we often end up telling the stories of the people and spaces around them. It is more digestible than the story of the person themselves, and that person becomes a logical reference for the stories that we explain away about ourselves.
It seemed Matthew never quite trusted the notion of object permanence. When things would leave his line of sight, it was never guaranteed that they would come back. He took up a role as a protector of the physical universe, placing the burden on himself to make sure that he would maintain the same routines, so as not to create a ripple in the universe such that everything would fall apart. Occasionally, he would interact with us to reassure his notion of a communal reality of our home. But sometimes, things would fall apart or be washed away. To him, it had the gravity of the actual collapse of the universe.
Matthew was the reason I studied neurobiology. His unique way of thinking was the subject of my college essay. But since making that formal leap into my understanding of his brain, I have spent less time with him. And the only way to know/help Matthew directly is to be with him.
I want to say that I have an emotional connection to Matthew, but I am not sure that is what he cares about. Being close to Matthew requires an attempt to understand how he works, and realizing that signs of what we want for validation of a mutual understanding/love may only be for us. There is a scene in the Curious Case of the Dog in the Nightime in which the protagonist, an autistic boy, runs away from his fatherโs house and reunites with his mother. The mom wants to hug him, but the boy does not want to be touched. It is much the same with Matthew: there is a call and response nature to the โI love youโ and the โconversationsโ that we have together as a family. He will answer, but he does so strategically. Itโs kind of like wearing that Christmas sweater that you hate, but you wear it because your mom really loves it and expects it of you. You want to make her happy, but you will never care about the sweater itself. Maybe you just wear it so she stops bugging you.
Often, my parents will ask Matthew what he did at school. The social conventions of chatter are hard to break, even when you have raised a largely non-verbal boy for 21 years. Sometimes he will fabricate stories based on one word answers:
โMatthew how was school?โ
โGreat day.โ
โWhat did you do today?โ
โDog treatsโ
โWhat did you have for lunchโ
โWrapโ
Or sometimes there will be hints of clues
โWhat did you do at school today?โ
โPigโ
โWhat color was the pig?โ
โPurple.โ
There is a certain roulette to the conversations that Matthew will have. As his vocabulary expands. He plays trial and error.
The other day, I was talking to my dad, and he was going to take my brother to the zoo. I asked my dad what Matthewโs favorite animal was, and my dad said that he really liked the flamingos.
The favorite animal of the moment was decidedly the flamingo. Matthew was on speaker.
I asked him what color flamingos were and he said โblue.โ
there is a certain performance to the way that we interact with Matthew for each other. This made us laugh. My father responded, โNOOOOOO. What color are flamingos?โ changing his intonation to convey the ridiculousness of the answer. Like a pantomime.
And then Matthew corrected himself. โPink.โ However, he is 21 year old boy. Of course it is ridiculous that we asked him what color a flamingo was, but he indulged us, and we asked the question because we knew it was one that he could and would verbally answerโto give us a proxy of connection.
He has given our family a unique lexicon of his responses. I read Family Lexicon by _____, which talks about a similar thing. This internal language/catch phrases carve neural grooves of familiarity. It is an in group-out group thing. The life and history we have is broken by trauma that is linked to a place.
There is a closeness to my family which does not involve Matthew directly but which is built around him. My mother, my father, and I talk nearly every day. Because our laws of physics were quite different.
When we all lived in the house together, we all were under this unspoken oath that we operated according to slightly different laws of physics than everyone else. Restaurants, vacations, schools, everything that is a struggle for most families was amplified by a thousand because of Matthew. Having people over always required a story, an explanation, for a while, an apology.
It was a little while after I graduated from high school, and I was back in New Orleans for a winter break, so I was hanging out a lot with some of the people that I grew up with and staying at my parentโs house. My old friends and I would go out to bars quite near mine, and I would offer my parentโs house as a place to stay when we would inevitably come home late and drunk, but I noticed that one of my friends, for whatever reason, didnโt want to stay at my house.
I asked my other friend Ruthie why she didnโt want to say. Ruthie, one of my oldest, best friends, took a sharp breath in, and she said, โBrooke, donโt take this the wrong wayโฆโ I looked at her. โWhat? Just say it.โ She continued, โBut waking up at your house can be a bitโฆ,โ she paused again, โawkward.โ
She didnโt say it was because of Matthew. But that is what was implied.
It was weird to go to college out of state and to only have to think about myself.
Itโs often weird to think of my parents as people before they were parentsโas fun and lighthearted. They are still fun and lighthearted, but there is a guilty sadness to think of what their lives could have been. What worries they wouldnโt have had. Who they would have been.
All of us agree that we would probably suck a lot more if Matthew wasnโt the way he was.
And too, to imagine who and what Matthew would have been. Shimmers of โnormalcy.โ
Would he have been gay? Would he have liked sports? Would he have been a trouble maker?
There is a kindness to Matthewโa self awareness that seems like him and not his autism.
How much is him. And how much is autism.
Does that distinction matter? How much of that autism is Matthewโs autism.
How useful is it to know that story if his case is entirely unique? But then again, if we use diagnosis and categorization to developmental disorders do they become that anyway?
This is the story of a person. Not of autism.
The relationship my parents want me to have with Matthew verses the ones that we actually have. Even today, whenever Matthew is in the car,
Matthew has stores of information in certain people who he trusts. The conversations do not age, though they do shift from time to time.
New information is rarely generated in a conversation with Matthew.
I used to use books as props in a sense as well.
My story of Matthew is biased because I experience I through my own eyes, and I see him as a reflection of myself and as a standard of measurement against which I measure my family. Our stories will also inevitably merge once more.
How glamorous it can be to live as a sister of someone who is severely autistic, but to not have to have the constant burden of what happens when things go wrong.
Matthew is 21 todayโhe is four years younger than me, but he towers above everyone.
He and my father probably have the most interesting relationship in our family.
I canโt claim to know is internal world, but I can just offer an understanding of it.
The life and history we have is broken by trauma that is linked to a place.
There is a closeness to my family which does not involve Matthew directly but which is built around him. My mother, my father, and I talk nearly every day. Because our laws of physics were quite different.
When we all lived in the house together, we all were under this unspoken oath that we operated according to slightly different laws of physics than everyone else. Restaurants, vacations, schools, everything that is a struggle for most families was amplified by a thousand because of Matthew. Having people over always required a story, an explanation, for a while, an apology.
Screaming/crying in the middle of the night. Locks on the doors. Guilt.
A certain pageantry to introducing Matthew to someone for the first time.
One of us had to be at home at all times because Matthew could not be left alone.
Proximal loneliness. Parallel, and so close but not intersecting.
But then there is so much love.
The tandem bike, which is SO embarrassing. The squishy helmet Matthew used to have to wear in the car when he was little because he would bang his head against the seats too often.