By Adam Dietz
There’s something to be said for silence.
I love the sound of nothingness as it echoes through my tiny apartment, but hours from now…the silence will invoke feelings of dread and sadness. This evening, when I tire of these hermetic happenings, I’ll want the temporary tranquility of my space to dissipate. In a few hours, I’ll have opinions to voice again. I’ll have stories to tell and I’ll have questions to ask. I’ll wish the silence gone and I’ll make myself heard again. Later, when I tire from the soundscapes yet again, I’ll wish the silence back, once again embracing the quietude that I am afforded. A carousel of progression and regression that’s self-imposed. That’s my prerogative though. That’s how I have elected to spend my evening. Quiet, contemplative, and holed up in a shoddy 700 square-foot apartment. When I choose to break the silence and end this trivial restriction on the outside world, then I can do so. That’s also my prerogative. I’m not a product of my surroundings, my surroundings are a product of me. It is through my voice that I maneuver my way through this world. If I want to sing out then I’ll sing out and if I want to spend my evening in the shitty quiet that exists around me, well then that’s my prerogative, too. I choose the silence because I find it cathartic.
My brother Ryan, he has no choice.
My elder brother cannot talk. Ryan. He is autistic. He’s not artistic, though I would often mistake the two as a child. In the 90s he was retarded, but we don’t say that anymore and I think that’s a good thing. My brother Ryan is autistic. He does not speak. I’ve never heard him speak and as far as I know, he has not spoken since he was a diapered infant. You probably want to know why he can’t speak. I can’t say. You probably want to know what specifically is wrong with him. I don’t know. My answer to you is both nothing and everything. Nothing to me, but everything to the outside observer. In truth, I don’t know what my brother’s ailment is. I don’t know what attrition occurred within him as a young boy. I’m not sure about his chromosomal makeup, nor do I know if genetics played a role in the development of his eventual disability. You want a name. You want terminology. You want jargon. You want to know what’s wrong. But, I can’t tell you. I’ve never known.
We like to give things names. Tropical storms, teddy bears, traumatic experiences – we like these labels. We take comfort in the knowledge of a name. Being able to point to something and say Ahh, yes that’s clearly ________. But, I don’t have a name and I don’t think I ever will. When I was young, I wanted to know what was wrong … I thought that it might make things easier for me to understand.
But my parents preferred to keep things shrouded in the darkness, cloaked under a thin fabric of “severe autism” and raised eyebrows.
Now my parent’s general unwillingness to ever discuss anything relating to hardship is no longer applicable. I could find out what’s wrong with my brother if I wanted to. I’ve signed forms. I have rights. I have spoken to nurses. I’ve been given demonstrations on how to coerce my brother into toileting should he not feel inclined. I will inherit the responsibility of taking care of him, or at least portions of that responsibility.
So yes, I should be able to find out what happened to my brother and why he never speaks and why he used to fly into those fits of rage and why he’s the way he is while I am the way I am. All of these answers would be very much in reach, were I searching with my arms outstretched, but they are not and I am not. Knowing will not yield solace for me, nor will it enable my brother to better live out his time left on earth. The answer to the question that plagued me for so much of my life no longer holds any real significance at all.
Ryan and I, we share parents, a sister, and we came of age in the same bedroom, Ryan from Ford to Reagan and myself from Bush to Bush. I spent my childhood in the very room in which my brother matured and yet our experiences in the rooms were, expectedly, very different. The walls of Ryan’s room, come alive through the pictures of his youth, of which there are few. His bed rested up against the very wall where my bed rested during my tenure in the middle of the three upstairs chambers. Above his headboard hung a Detroit Tigers Budweiser sign reading Bless You Boys. Above mine, a pennant supporting that very same team. His carpets were a yellow shag, a sign of the times. My carpets hunter green, a sign of my inclination to spill. Copious amounts of wooden shelving remained a constant throughout.
Years after he left, as I sat in that room, I would think of him. Wondering if he might have sat on that very same section of the floor. Wondering if the attic entrance in the corner of the room weighed on his mind as much as it did mine. Wondering if he treasured the view of the nearby pond as much as I came to in my teenage years. I pondered our shared room as well as our shared lineage and wondered what might have been. I envisioned him in the space as I knew him. I imagined him leisurely chuckling to himself, covering himself in blankets, forming a natural bonnet on his head and then rocking back-and-forth for hours on end. Content. Satisfied. Then my imagination would grow darker and more perverse. I imagined what it might have been like to have a brother that I perceived as being “normal” and how things might have been different.
When I was seven, maybe eight, I drew a photo of two young children; Tommy and Kimberly, named after Power Rangers, and I placed the sketch under my pillow. They were to be my younger siblings. They were to distract me from my sister’s departure to college and my brother’s autism. They were going to help me through the loneliness and I was to teach them the world as I knew it. We would watch Home Improvement and catch pop flies. I would talk to them at night when I couldn’t fall asleep. They would side with me when my mother wanted to make Goulash and I didn’t want it. Friends, confidants, and siblings—the triumvirate of my prepubescent wish list. However, this scripted teleplay never came to fruition and after three days with the crinkled sheet as close to my dreaming head as is humanly possible, I gave up. After that third, I confessed, what I then believed to be, sins of grandeur to my mother. I came clean on the paper and my wish that Ryan had been born as I was. Her embrace provided me a fleeting comfort, but the guilt remained for years after. Memories of the drawing lingered and for much of my childhood I felt a distinct sense of guilt for having tried something so frivolous and fool hearted.
Primarily, I felt as though I had turned my back on my lone brother. He would never have done such a thing to me.
During these adolescent years, I worried with considerable frequency that I, myself, might exist somewhere on the autistic spectrum. I feared that Ryan’s troubles were genetic and I, being the next born male, would almost certainly be inflicted in a similar way at some point in my life. A combination of werewolf genealogy logic and a deep-seated need (maybe a desire) to fret on the most illogic of concerns– birthed situations, near breakdowns, in school and at home that would bring me to the brink of tears. With regards to my brother, I think the cliché about fearing that of which we don’t understand, rang true throughout my childhood. I had heard in school that knowledge was power, but without any real knowledge of my brother’s autism, I felt powerless and void of confidence.
With the passage of time came a lessening of the guilt and fear that was steeped in sections of my childhood.
Both Ryan and I have mellowed in our older years. He’s become marginally flabbier and is less prone to bouts of anger and rage and I’ve slowly begun to understand and define my role as his brother. The question of why and how slowly has meandered from my consciousness as I’ve come to the realization that not everything is about me. Less a realization than an admittance really. I do not wish to come down on the childhood version of myself for wishing my brother normal. Though that guilt will always exist somewhere within me, but as a child I did worse things. I called my mother fat once. I purposefully whipped a basketball at a kids face in Phys Ed and then blamed it on someone else. I cheated on science tests for a whole year and I shot a singing bird out of his perch. That kind of grade school regret no longer interests me.
The nature of Ryan’s existence has become clearer as time has gone on. His fragility juxtaposed to the strength and power that I hold met on a cold night a few winters back. It was on that snowy eve when dusk gave way to desperation that things became abundantly clear.
In a time in my life where my purpose seemed vague and my prospects few and far between, I moved back home with my parents. With my parents abroad for several months, I was instilled with the role of caretaker to our childhood home.
In the coldest of Januarys, I unpacked the cardboard boxes of my collegiate existence and waited for adulthood to begin. It was that January, listening to Elton John’s Rocketman, awaiting my favorite verse about Mars being a lousy place to raise your kids, that I received a phone call from my parents in India. Ryan had been bitten by his roommate in the leg several days back, but the bite had gone unrecognized and an infection had occurred. He had been taken to the hospital two days before and, largely, had been alone since that time.
The room was dark as an early nightfall had overcome the space, but the overhead bulbs had not been turned on in conjunction with the setting of the sun. It was impossibly dark in there. An undeniable odor hit me as I entered, recognizable. I flipped the switch and one-by-one, the fluorescents came to life. In the far corner of the room, my 41 year old brother cowered at the beams from above, shaking profusely. He had wet the bed, perhaps several times and the window had been left open to alleviate the smell of the piss. Sheets dampened, Ryan’s teeth chattered as he sat with gown tangled around his frame in such a way that his nakedness was on full display. I carefully inched towards him and spoke softly into his ear. I grasped his hand and held it for a beat, making false promises in a soothing tone. It was all I could think to do.
I spoke to the nurses with great frustration, minutes later. They cited communicative issues … but I think that someone turned the lights out and they forgot about him.
The questions of what or how no longer plague me. I still don’t know what precisely happened to my brother. The specifics elude me and they probably always will. I came to the realization that, I assume, my parents came to decades before—questions of why do little to quell the sadness, nor do they provide any form of closure. It is what it is as a sentiment is entirely too cavalier to describe the feeling and yet it isn’t.
Ryan cannot speak. Ryan is now legally blind. Ryan refuses to walk anymore and no one knows why. Finding out what caused this will not change what has been caused. The guilt is gone. The fear, too.
The cathartic silence of the evening reminds me of my brother.
I think of him in those rarefied moments when the world is mute and the existence of others is nil. I think of the Ryan of my youth, the Ryan that struck himself so many times in the ear that his ligaments fused together. I think of the Ryan of the hospital, the terrified middle-aged man ignored by the salaried helpers. And I think of the Ryan of today, the Ryan of September, the Ryan who ate two double cheeseburgers, a large fry, and a Coke and hummed whimsically as he held my hand.
I think of all the Ryan’s I’ve known and how as long as he is loved, his voice will always be heard.
Adam Dietz is a writer and podcaster living in Milwaukee, WI
Dear Adam -Thank you for speaking out about your relationship with your brother. I’m sure my sister would share many of your views and feelings in the same way about me. Though I’ve been able to speak since childhood, I had periods where I isolated myself from the world by choice as a way to protect my inner world of safety. Some of us just aren’t ready to engage a world that we find strange in various ways, and our struggle with physicality seems to take all of our focus and most of our energy. We may perceive the world as hostile or unfriendly, and we’re waiting for the world to change for the better, so we can participate more fully. Autism isolates us, sometimes by choice, from a world that we feel unready, or unable to comprehend and engage.
It still amazes me though, how physical contact can change my mood. When someone with good intentions lays a caring hand on my shoulder, it can instantly change and lift my entire mood, holus bolus out of the pit I was sitting in.
Thank you, Adam. Your story is rife with raw and meaningful truths and so beautifully written.
Aunt Lea Lance
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