Light show
Moons, Robins, and other fascinations
My first word was ‘momma.’
My last word was ‘grape.’
When I was three, the words stopped coming altogether. Dr. Victoria called it regression. Mom and dad didn’t believe her, but they let me keep seeing her anyway. I saw Dr. Victoria for as long as I could remember. We’d draw pictures together. She’d ask me to draw different things. Then she’d ask me to say the words of the things I drew. I tried. I swear, I tried. But it wouldn’t come out.
She asked if I was scared. I didn’t know what the feeling was. I tried to explain that, but I couldn’t get the words right. Couldn’t get the drawings right. After that, we started learning sign language. Dad also bought me a tablet I could write on. He told me I was good at words. That he was proud of me for doing as much as I did. It never felt like enough for mom though.
The less I talked, the less she tried to talk to me. But dad never gave up on me. He sat with me for hours, filling the quiet with his own words and ideas. He listened when I wrote things down or signed things out. He wasn’t very good with sign language, but he tried for me. It really felt like he understood me. Then, one day, it made sense. I remember, we were looking through the roof window in my bedroom. We were sitting in my bed, just looking up at the stars. Nights like that are how I always want to remember dad.
“In a lot of ways, you’re ahead of me,” Dad said.
I looked at him and signed a question mark.
“When I was your age, I was a terrible artist.” He laughed and smiled, “My sign language wasn’t great either… and by ‘wasn’t great’ I mean… I didn’t know sign language. Still not so good.” He sighed and shook his head, “You know what my first word was?” He asked.
I shook my head.
He leaned in and whispered, “Robin.” He chuckled and spoke up again, “I loved birds. The American Robin was always my favorite. In the winter, their chests get all big and full of feathers. I was 10.” He nodded. “My parents didn’t think I knew my ass from my elbow -” He covered his mouth, “don’t tell your mom I said that.”
I mimed zipping my lips and he laughed.
“But yeah. I started talking at 10. I thought maybe you would too, but those years came and went, and you know… I think that’s okay.” He nodded, “Because you understand more than I did at your age. You’re an old soul. Like an uh -” he paused to think for a second, “Like… something.”
I tapped my chin, and grabbed my tablet. I wrote down one word: ‘Moon.’
“Oh, the moon?” He smiled, “I like that. You’re an old soul. Like the moon. My little girl is as old as the moon.”
He pulled me in for a hug, but not for too long because he knew how big hugs made me feel. He rubbed my cheek with his thumb and said, “Goodnight, my little moon. Tomorrow will be better. Just like every day before it.”
Tomorrow will be better? I - I don’t remember why he said that part…
.
.
.
“Mr. and Mrs. Porter, I’m sorry to say, but based on these test results, your daughter may never speak again.”
“What do you mean, Vicky?” mom asked. She looked offended. Angry that Dr. Victoria would even suggest that.
“I’ve been working with her for years. She’s a bright girl, she really is, and these results reflect that. It’s hard to tell - and I’m not a scientist - but the results from the tests indicate that the regions of her brain involved in speech formation never fully developed. They’re there, but they’re… what’s the word? They’re atrophied?”
“What could’ve caused something like that?” dad asked. He put a hand on my arm that seemed to mean that this was okay, but he was curious anyway.
“Could’ve been a bacterial infection early on, maybe. Or it could’ve been genetic. It could be any number of things, but that really isn’t what’s important now. What’s important is that she’s developing exactly as we’d expect someone to develop… she just can’t verbalize it. And that’s okay. One of the things we’ve been working on for years is helping her communicate without her voice, so this isn’t as bad as we may feel like it is.”
It was nice hearing Dr. Victoria say that this was okay. I guess it was scary to hear there was something wrong with my brain, but… it was just me. I didn’t feel any different, and I guess I was kind of relieved. At least now I understood what was different. It didn’t change me much at all, but… when I looked at mom, I knew it changed something in her.
“You don’t get to tell me what is and isn’t okay!” Mom stood up as she raised her voice.
“Deborah. Please.” Dr. Victoria said in the soothing tone she used when I got upset too.
“No, Vicky, you said this would help! All it did was give us false hope!”
“Deborah, I -” Dr. Victoria shook her head. She turned to me, “Can you step out for a second.” I nodded and walked out of the room. I wanted to be alone anyways. Leave it to my mom to make me feel like a freak. Like something was wrong with me. Like something was broken inside me. And mom… she was so angry. I couldn’t help but feel like she was angry with me.
I slumped down in the hallway next to the white noise machine Dr. Victoria kept outside her office. Even through the machine, I could hear mom yelling. “No, you listen to me Vicky! You said we could fix this! You’ve been saying it for 12 fucking years! Did you lie? Have you been lying to us?”
“Deborah, we can only do so much. We didn’t know the root cause, but now that we do -”
“Because you’re stupid or what?”
Dad tried to step in, “Debbie -”
“Stop! No! I won’t ever get to hear my daughter’s voice again! We won’t ever get to talk, we won’t get to have a normal relationship! Because you -”
“I’m not stopping you from talking to your daughter, Deborah. She’s a teenage girl, and this proves without a doubt, not only does she fully understand what’s happening around her, but the only thing stopping you from talking to her is you.”
My dad let out the most tired and stressed out sigh, “Dr. Victoria -”
“How. Dare. You.” Mom was so angry. I knew there wasn’t any getting her out of this when she got this way. I didn’t know what to do, so I put my head down between my knees. When I was younger, I’d start crying when she got like this. Now I just knew to keep my head down and do what I was told.
“Okay, look…” Dr. Victoria sighed, “there’s a camp. Camp Wellness. They do some cutting edge therapeutics there. I don’t like to recommend it, but… I’ll give you a brochure at least.”
Mom stormed out with a brochure in her hand after that. Dad followed behind quietly. When he saw me in the hall, he reached a hand out to me. I took it and he lifted me off the ground. He put an arm around me, but I pulled away. He gave me a sad look, but he nodded like he understood. I tried to smile, but I felt so numb. So broken. I think he did actually understand. I hope he did.
When mom was far enough ahead, he whispered to me, “Mom does love you. She does. She’s just… frustrated.”
I nodded. I didn’t think anything else I had to say would matter anyways.
.
.
.
That night, I sat in my bed and listened to my parents argue downstairs.
“This could be good for her!” mom argued.
“Would it? We know what’s happening, isn’t that enough?”
“But they can fix her!”
“What if she doesn’t need to be fixed, Debbie?”
“What does that even mean? Of course she does! She’s fifteen and she can’t talk!”
“But she’s happy. Isn’t being happy enough?”
“How would you even know that? It isn’t like she can tell you!”
“But she does. She does, Deborah. We have fun together all the time, and you can be a part of that too! Just read her sign language, and look at her drawings! Her beautiful drawings! You could see how happy she is - she doesn’t even have to sign to tell you! You could just see it!”
“And after she gets the surgery at Camp Wellness, she can actually tell you how happy and grateful and better off she is.”
There was a really long pause. I filled it with my own tears. I was used to mom talking about me like this when she thought I wasn’t listening, but… it was different when she thought she could fix whatever was broken in me. I shook my head, trying to deny the world I was stuck in. I thought about running away, but what would that get me? Where would I go? None of my friends could help me, I didn’t have any money. I felt completely alone. Completely isolated. Actually being alone in my bed made it worse. I wiped the tears away as fast as I could, trying to get ahold of myself.
“There’s nothing wrong with our daughter.” Dad finally said. “If you took the time to get to know her, maybe you’d see that. Maybe you’d understand she’s happy exactly how she is.”
“If you think there’s nothing wrong with her, maybe there’s something wrong with you too.”
“Debbie, don’t start -”
“I’m just saying,” Mom started. Whenever dad defended me too much, she always said it was because there was something wrong with him too. That wasn’t new, but the anger in dad’s voice was definitely new.
“If there’s something wrong with your daughter, and your husband, and your family therapist, then maybe, I don’t know, just maybe, Debbie, you should just go!”
There was a long, painful pause. “You don’t mean that.” Mom said in a calm, matter of fact tone.
Mom was right. He didn’t mean it. Dad wouldn’t make it without mom. He couldn’t survive on his own. Mom was really good at reminding both of us that we’d never make it in the ‘real world’ without her. Maybe she was right.
Dad sighed, “We’ll call tomorrow. We’ll see what they say.”
After that, dad came into my room. Told me about the robin and we talked about me and the moon. Tomorrow will be better. That’s what he said. He said tomorrow will be better. I believed him. But I didn’t believe that each day would be better than the next. Camp Wellness was going to make sure of that.
.
.
.
“Mrs. Porter, you were right to bring your daughter here.” Oh my god, I hated his voice.
Immediately, from the moment I met that man, the way he spoke grated on something in my ears. It made my throat hurt. It was like plastic wheels dragging across gravel.
Mom called Camp Wellness 3 weeks ago. I became a ‘camper’ just a day ago. Being a camper meant sitting alone in the ‘wellness chamber’ while they ran all these tests on me to make sure I wasn’t contagious and to find out what would fix me, I guess. It was lonely. The nurse took away my tablet, and no one on staff spoke sign language. It was… isolating.
In the room with mom, dad, and that man, I still didn’t have my tablet, so I tried to sign to dad what was going on, but he was having trouble making sense of the frantic signs I was making.
My mom signed one single word, “Stop.” with a glare on her face. The man looked at me, then mom. She smiled, “Please continue.” She said.
The old man in a lab coat pointed to some numbers on a graph I didn’t understand. I felt like this was a talk we should have been having in a hospital room, but we were in a weird corporate meeting room with too many chairs and too big of a table.
“This is your daughter’s mitochondrial RNA levels, and this is a normal person’s.”
“So, there’s something wrong with her mitochondria…?” Mom asked.
“I could’ve told you that just from looking at her,” The man said, “but these samples prove it,” he cleared his throat. It didn’t do anything, “beyond a reasonable doubt.”
“But the therapist said it was just part of her brain.” Dad reasoned. “That she’s doing okay otherwise.”
“Look at her.” The man said. He walked away from his stupid graph and got close to my face. I tried not to pull away, but his breath smelled like tobacco and some sort of weird chemical-y stink I didn’t know. “Your daughter is a classic case of genetic dysregulation. That’s what makes them mute. Genetically dysregulated nervous systems.”
“Genetic? So we did this?” Mom asked. The way she sounded so guilty made me angry.
“Maybe.” He said. His face was too close to mine and it made me nauseous. I could see every pore, every little blemish and scar on his spraytanned face. “I would need to do genetic testing on both of you to be certain.” He said.
“We’d be happy to do whatever you think might help.” Mom said.
“Doctor, is this all necessary?” Dad asked.
“It is.” He replied. He was still in my face, like he was sizing me up, “We have a new surgery that I think will be perfect for her, but we’ll need to keep her at camp for a while longer to determine if she’s a good candidate. Her brain might be too far gone. Too many injections would be more trouble than it’s worth. We’ll need to investigate further, but our preliminary data on her shows she’d be a good candidate. There’s just some things I need to figure out through a closer visual examination…”
“Can you tell all of this from just looking at her?” Mom asked.
“I can tell a lot from looking,” he said, “but what I can’t tell is if there’s any thoughts behind those eyes. She can certainly sign, but she clung to that damn tablet like a monkey with a security blanket.”
“I - I bought her that to help her communicate.” Dad said.
“That was your first mistake. She should’ve never used that if you wanted her to develop normally.”
Something flared up inside me. I couldn’t believe this! Without a second thought, I spit in his face.
He recoiled like I punched him.
Mom gasped.
Dad looked at me, shocked.
My second thought came too late. That was the wrong thing to do.
“This -” He wiped the spit off his face and sanitized his hands with hand sanitizer from his pocket, “this is exactly what I was talking about.” He stepped over to a button on the table and pressed it. “We’ll finish this discussion while your daughter’s out to lunch with the other campers.” He announced. Almost immediately, two nurses came into the room, grabbed me on either side and dragged me out of the room. I tried to fight back, but they had me too quickly, and I was whisked away.
I just barely heard my dad protest quietly as my mom continued the discussion, “so about those genetic tests…”
“Right. If we find anything, we could trace this back and maybe help you as the parents with some improvements too…”
They dragged me through the halls, until I was in a part of the ‘camp’ that looked more like a hospital. They threw me down into a chair, and before I could even orient myself, they jammed a syringe into my neck. The world was spinning for a while, but I could still understand them even if I couldn’t see clearly.
“What should we do with her?”
“He said take her to lunch. Just put her in with the others.”
“Like this?”
“Yeah? Who’s going to care? She’ll be fine.”
They moved me into a wheelchair and started pushing me somewhere. Whatever they gave me made my body feel all tingly all over and my vision was so blurry, I couldn’t even make out shapes. I could feel myself drooling, but I couldn’t make sense of any of it.
Finally, I found myself, barely able to see, but able to move again. My whole body was tingling, but I sat myself up from where my face was planted on a table. My hearing slowly came back, and I was able to orient myself to dozens of people around me. I couldn’t count how many people for sure, but the cafeteria was full of people. I saw people of all ages and sorts. Some sitting together, others on their own. Something didn’t seem right, but it took my fuzzy brain a moment to make sense of it.
Everyone - and I mean everyone - was completely bald. Everyone except the nurses and guards. Oh my - there were guards. Guards in blue at every door holding batons. The nurses walked around, passing out medications to different people. The people took them then went back to whatever they were doing before. A scary number of people were staring at walls, not engaged with anyone or anything around them.
I looked around, trying to find anyone who could talk to me, but no one seemed to notice I was even there. The more I looked, the more I noticed something that scared me. Every one was bald, but more importantly, they all had these… metal things on their heads. They were in slightly different places for everyone. They had what looked like a little battery reading like my drawing tablet had, and they were at different charges. I was trying to find one that was low or empty. What did that mean? What would happen if it was empty?
I found one.
A few tables away, an older woman’s was nearly empty. When the little battery was low, the blue light would blink frantically. A security guard walked over and stood next to her, then two nurses went over. One grabbed her shoulders on either side.
“Head down.” The security guard demanded.
“What? No, I -”
“Sue.” one of the nurses said, her voice stern.
“I feel fine, we don’t need to do it now.”
“Sue, the implant says otherwise.”
“But I’m telling you to your face, I’m fine!”
“Calm down.” The guard said, his face impassive.
“Sue, just put your head down.”
“But I said I’m fi-” The guard grabbed the woman by the back of her head and shoved her face into the table.
“Damn it…” The nurse grumbled as she prepared a terrifyingly large needle.
“Take it easy on her.” the nurse that was holding her shoulders said.
“She just had to follow orders.” The guard replied and kept holding her. “Now hurry up and dose her.”
She struggled and fought, but the guard wouldn’t let her go. I didn’t want to see what happened next, but I couldn’t look away. As the nurse and the guard held her down, the other nurse took the long, long needle, and slid it into the metal device on the side of her head. Her hand was slow and steady as the needle glided through her skull and into somewhere in her brain. She started to jerk and kick. I could hear her crying. It sounded so close, almost like she was sitting next to me at the table.
“Sue, you need to relax. You could make it worse if you move too much. You don’t want the needle to scramble your brain, do you?”
“Stop. Please…” Sue tried to keep talking, but the guard held her down. I heard her let out an involuntary cough and her body jerked.
“Damn it!” The nurse said again. “We need to get her to an e-bed, she might’ve scrambled herself.”
“No - No, I’m fine!” Sue insisted.
The nurse carefully pulled the needle out. She turned to the other nurse and the guard, “You need to do better at holding her still! We can’t keep doing this!”
“I - I’m trying.” The other nurse said.
“Not my fault.” The guard said, completely indifferent to what just happened.
The nurse with the needle motioned over another nurse with a wheelchair, then grabbed a walkie talkie, “We’ve got a scramble. Need an e-bed prepped for a full mark-up.”
I couldn’t even start to understand what I just saw, but I knew I needed out. I jumped to my feet, the cafeteria table groaning against the tiled floor as I stood up. Every security guard and nurse in the room was immediately looking at me. I didn’t care. I turned and I ran out the nearest door. The guard didn’t have enough time to react, and I got past him faster than he expected.
I didn’t know where I was going or what was happening, I just knew I needed to get away. I ran through the camp - the prison - just trying to find my parents and beg them to go home. I didn’t want whatever it was they were doing here. I didn’t want it. I didn’t need it. I heard a call over the speakers in the ceiling, but I couldn’t understand it, my head was moving too fast.
I stumbled around, running past confused nurses and guards, trying to find my way out of this horrible maze. Finally, like a miracle, I found my parents and that terrible man. I burst through the doors into the conference room, falling to my knees in front of my parents.
“What is happening here?” Mom demanded.
“Home.” I signed back. “Home. Please.”
Dad stood up, “Debbie, let me talk to her.”
“I don’t think that’s necessary.” That man stepped between me and my dad. “She’s not well. That much is obvious. She cannot live in society behaving this way. But here we can help her.”
“No. No. No. No”
“The surgery will take time to prepare, and the recovery is long. We’re still trying to figure out outpatient care, but the regular injections are best done by a professional hand.”
“Well, we wouldn’t want to take her out of school…” Dad said.
“We have education on premises. We’re accredited with state and federal bodies.”
“That doesn’t sound so bad, does it?” Mom said.
“Debbie,”
“No, Ned. This could be good for her.”
“And, Mr. Porter, you can come and visit her while we evaluate you as well.”
Dad let out a shaky breath. He picked me up in his arms and held me longer than I liked, but I realized he wasn’t doing this for me. He was scared. Dad was really scared. He sighed and nodded, “We can do this together, little moon. Have matching ports on our heads, I guess, huh?”
I shook my head no, but he didn’t seem to notice. He squeezed me. I almost couldn’t breathe, but I didn’t know what else to do. Behind me, guards burst through the doors.
“So sorry, sir, she slipped past us!”
“Don’t worry.” He said. “Let her say goodbye. We’re not monsters.” He knelt down next to my dad, “Once you’ve recovered and your module’s installed, you and your dad are going to have all kinds of talks. You’ll look back on all this and laugh. You’re going to get better. You’ll be able to be a functioning member of not just your family, but of society.”
For the first time in all my life, I didn’t just want to speak, to yell, to scream. I needed to. I needed to so bad. If I could just open my mouth, this would end. If I could just open my mouth, it would all be over. One word. Two letters.
N-O.
Hi everyone, thanks so much for reading! This was sort of a different story but I love branching out. Besides, Light Show has been an idea in my head for a while now, and now it’s out in the world. I don’t know if I fully did the idea justice given that I gave myself a week to write it BUT I think it still worked. What do you think though?
Anyway, I’m so close to wrapping up some much larger projects that are not for Substack, and also interviewing for more jobs and preparing to potentially move in the coming weeks, so we’ll have a little down time, but expect more fun over on this side in the coming weeks nonetheless! I have plans for this space, that’s for sure.
Alright, all that being said, thanks for reading and consider subscribing and leaving a tip if you so choose!
Catch you soon!
Beautifully written, and so bleak.. One Flew Over the Cuckoo's Nest meets chemogenetics! Great job.
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