His little world

I wanted to talk about my family friend’s son named Shaun. I’ve known Shaun for a while, he was really young when I met him, I was still young however, in my middle school years I was still learning things. Shaun, along with his brother Stefon were autistic. Whenever it came to the family parties I would be the one to watch over them and keep them company since I was still young and couldn’t be a part of the adult or even the teenage conversations. Shaun was an interesting kid, although he didn’t communicate verbally with words, I felt like I could still understand him and what he needed. I felt like I could understand his emotions.

Shaun would always get in trouble for breaking things, but I knew it was him just stimming because that was one of his habits. I remember during a Christmas party he grabbed one of the ornaments from the tree and smashed one to the ground, and then another, several times until he was stopped by his mother. Shaun got in trouble with his mother. I felt bad for him, I knew he wasn’t doing it to make anyone mad, yet his mom did get mad at him for doing it anyway since it wasn’t his house. She looked defeated, like she didn’t know how else to help him whenever his behavior would get worse. She looked tired too, like she was doing everything she can to just enjoy her time at the party and also watching her boys making sure they didn’t break anything or do something dangerous. My parents loved Shaun and his brother, my dad always made an effort to let Shaun be seen, playing with him, making jokes and funny faces. Whenever Shaun was with me, I tried my best to entertain him, to make him feel heard. He always had a fascination with my hair (back then I used to have hair that would reach the floor I had to keep it in a braid since it was so long, I’m not kidding haha) so every time we sat in a room to calm him down he would touch it and slowly begin to settle. The way he felt my hair and stared at it gave me a sense of comfort knowing that I was there with him making sure he was okay. He would hum the majority of the time, whenever he wanted something he would hum in a pattern and point at the object that he wanted. Shaun never had good focus either, after touching one object he would go onto the next and then the next. Shaun’s mom works with other children who are autistic, whenever she would come to these parties, she would bring books for them to read, I would read the books to Shaun and his brother. Shaun was always mesmerized by the images in the books, he would hum and point at the characters. He always made me feel like whatever I was doing was helping him and that gave me a deep sense of reassurance.

Sean was very excited about noises but more specifically with car keys. Whenever it came to these parties or Mass services because we do services in different people’s homes, Shaun would actually find people’s keys and take them and play with them because he loved the sound of the jingling. My dad didn’t care, he would give Shaun his keys so he could be happy and play with them. Of course he didn’t know any better because he didn’t understand the ownership of somebody’s property. I always felt like the adults who would get their keys taken away wouldn’t truly understand how happy it made him. They would just get a little frustrated because of the fact that their property was taken away from them. I definitely think being in middle school and being exposed to that environment where somebody has a disability made me confused at first because back then I didn’t know the true meaning of autism and the levels and how there’s a spectrum. I only got to see the behaviors and patterns of somebody with it during that time, but now being an adult and learning more about autism and neurodivergence I slowly start to understand Shaun and his behavior. He just wanted to be understood because of his different way of thinking. Unfortunately due to family issues in the past I haven’t seen Shaun in a while but I hope right now since he is older that he’s getting the proper care and going through a more suitable way of teaching for him to understand. I really do think Shaun is a good kid.

I just feel like people are always afraid to try to communicate with people who have this disability because they don’t understand the way autism works and the levels of the spectrum. Every time I see a child with autism, or introduced to someone, I am never afraid to interact or learn from them, because with Shaun, all I ever did was make him feel heard and safe, and I want to do that for every other boy or girl who has autism. Society likes to put this negative connotation and label of people with disabilities which to me is just undermining their true potential and power, I learned a lot from Shaun and my other experiences after that, and seeing how their minds think and interact made me open my eyes to a whole different concept of learning and understanding. I learned more patience, I learned to really slow down my “normal” thinking and try and fit their perspective into my life. Doing that type of thinking really does open up your mind to a lot of ideas and thoughts. I am thankful for Shaun and the way I made him feel comforted and cared for, that’s something I won’t ever forget. I do know his parents were really good when it came to teaching him, but just like Shaun and other kids who have it I hope the world is able to see that there is nothing wrong with them they just have a different perspective which isn’t and shouldn’t be seen as a negative thing.

Upward Spiraling Out of My Body Dysmorphia

Image by Karolina Grabowska on Pexels.com

trigger warnings: body dysmorphia, suicide, mentions of disordered eating, illness

If you remember what your body looks like, I think you’re one of the lucky ones. If you don’t, then I’m not so glad this is what we have in common. Coming from an older West Indian family, my body was always a discussion. No matter how many soccer practices I showed up to, salads I ate, nor how well I did in P.E. class, whenever an aunt approached me it was always “You’ve gotten bigger!” Even throughout my adulthood my body has gotten bigger. I know I’m big, but I wish they knew that I didn’t need to be reminded every second of my life.  

I think it’s important to note that I wasn’t always fat, but I still struggled with food and dieting at a young age. Having to deal with cholesterol issues during elementary school was the start of my long, relentless relationship with food. I remember sitting in the doctor’s office with my uncle, his eyes glazed over, listening to every word my pediatrician said. My relationship with food not only originates in this moment, but also with my family’s history of heart disease, diabetes, and many other debilitating diseases. By the time I reached high school, my uncle had a coronary angioplasty, stent insertion, triple bypass heart surgery, and several other surgeries for various kinds of cancer. He never wanted me to suffer like he did.  

For as long as I can remember, my uncle micro-managed everything that graced my plate. There were even times we fought at the dinner table so he could see whatever takeout I’d brought home. The stress of bringing home any form of food that he would scrutinize started to transfer into other aspects of my life. In middle school I discovered how uncomfortable it made me feel to eat in public spaces. In high school I even went as far as to become the library aide so I could escape the daunting task of consuming food in the adolescent-filled cafeteria and tried my best to retreat back to the library every lunch break. The library was my safe haven, a place of structure for the moments where I felt the most vulnerable. This is still a habit I have today, I always look for security.

It wasn’t until my senior year of high school that I started my first romantic relationship. He was beautiful, smart, and even had a piercing on one ear that was the jackpot of my teenage girl fantasies. Being with him was the first time someone told me I was pretty. For someone that had only dreamed of having a boyfriend, that meant the world to me. I naively thought that feeling would last forever. As the pandemic raged on, and quarantine forced us into our isolated nests, there became an evident strain on our relationship. Still, we continued to stay with each other. I never noticed when his demeanor changed or that I couldn’t fit into half of my jeans anymore, or even that I was getting bigger than him. I made a huge mistake. You know that horrible mistake people make when they get lost in a relationship because they already have constant bodily validation? Yeah, that one. I gained the “happy weight”, I let myself go. People hate happy weight because being fat makes you feel empty and alone after a relationship. Nobody thinks that you’re attractive anymore and it feels like now there’s this huge responsibility that you have to get back to when you were skinnier. I fucked up.

Coming out of that relationship I became extremely depressed. I moved back in with my family, back to a space I never felt secure in. Endless nights spent scrolling through Tinder, a space where your body is always being perceived, felt completely invalidating. I was a completely different person. And I didn’t feel that way because I had loved and learned valuable lessons about navigating relationships, but it was because I was fat. Everytime I looked into the mirror, a devil appeared on my shoulder pointing out every flaw on my now monstrous body. It’s like my ego had turned against me. 

I didn’t want to live in my body anymore. I thought I was nothing without the comfort of another person telling me I was good enough. I can’t say that I never feel that way today, but I’ve worked on it. I’m not about to go on a spiel about how much it matters to love yourself, nor about how self-love is a journey and not a destination… but would love really be worth it if it meant that I had to be skinny, athletic, or fit any of the aesthetic qualities guys on dating apps wanted? Probably not. But I want to be better, because I know that the moments in between these feelings of doubt and despair are much more important than these superficial views of my body. Though, how I never saw myself changing is still a phenomena to me.

In the end, I’m still trying to upward spiral out of this feeling called body dysmorphia.

Finding my Rhythm Joking About Arrhythmia

Content warning for brief reference to suicide.

Being chronically ill has to be the funniest thing in my life. When I started a job last year, I was given a magnetic nametag to fasten to my shirt. I did it without noticing the warning on the back not to put it near pacemakers—a warning I assume the higher-ups had never considered either, because what kind of able-bodied young person has a pacemaker? An hour or so into the presentation, a muffled beeping fills the room. No one recognizes it, so we move on. And a few minutes later, beeping again. It’s coming from near me. Is it in my jacket? No, it’s literally in my body, because I put a very strong magnet right on top of my implanted defibrillator.

Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

Exposed (TW: OCD, Perfectionism, Bugs)

If anything has debunked the mind-body split for me, it’s living with OCD. My obsessions are felt as deeply as they are thought. Every day I physically feel my compulsions begging for my submission. In resisting them, my body is flooded with a deep, gnawing unrest.

The normalization of perfectionism convinced me that my OCD was good for me. I looked good on paper – but I see no paper in my skin, my blood, my brain, my bones. I have learned that to save this body, I cannot give everything my best. “Just right” can never be achieved so long as I am the judge. The goalpost moves too quickly to register.

Queer Brokenness: Intersection with Mental Illness

Image Source: http://trauma.blog.yorku.ca/2015/12/south-asian-queer-community-lacks-visibility/  (Artist – Jinesh Patel)

(Content and Trigger Warning: Self Harm, Suicide, Substance Abuse, Emotional Abuse, Intimate Partner Violence, Bullying)

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I often find that mental illness and queerness aren’t addressed properly or constructively when talked about together. So often the public at large would have us believe that queerness is a result of mental illness or that mental illness is the result of queerness exclusively. With this in mind, the queer community will often push back on society’s behavior by talking about the two exclusively from each other, frequently ignoring all the ways mental illness intersect. That’s does not go to say that queerness is the result of mental illness or vice versa at all, but rather it shouldn’t be ignored that many people in the queer community go through both because of the way society has constructed and reacted towards queerness. For example, queerness has often been perceived as a deviant thing, it has historically been punished and worked against in a variety of ways.

A Farewell to Grandpa

The first funeral that I went to was my grandpa’s. He was 89 when he passed away. Now, no one ever taught me about the rituals that take place at a funeral. I only knew that I had to wear black.

Number 1 excitement

I struggle to type (I’m a great typist, 88 wpm, not to brag or anything) that I suffer from chronic illness.  I have an idiopathic immune system “issue” that makes my body more susceptible to bacterial/viral infections.  Despite being more wordy, for whatever reason, that’s a lot easier for me to type.  So basically, I get sick. A lot.

Diff’rent Smokes

I remember it was a cold, dark night. I was back at my house in Columbia, and I believe I was in elementary school at the time. Back then, my dad was barely ever home, and this particular night happened to be one of those rare occasions where my mom was not home either. Fortunately, my sister was home to babysit me (sidenote: she is 12 years older than me), but at the time, it occurred to me that I hadn’t seen her around the house for a good 30 minutes (sidenote: I was kind of needy). So I searched around the house, and finally I thought to look out the little windows to the side of the front door. I could just barely make out a dark figure at the door, with puffs of smoke slowly seeping out the figure’s mouth. The glow of a lit cigarette was also evident. A couple minutes later, after I ran far away from the front door, my sister came back inside. I told her I saw someone (“or something“) smoking right outside our front door. She seemed kind of panicky at this point, but then she replied, “Oh, it was just our neighbors, the Silvermans!”

Nice try, but why blame our nice Jewish neighbors?

Fast forward to the present, and my sister is still smoking. Note that she was just a small girl at a pretty shitty high school at the time of the incident described above; now, she’s a high-powered account executive in her early 30s. She has tried quitting on several different occasions, and just recently, she went about a month without lighting up. But she succumbed to the temptation this past week, blaming it on work stress, and that I could “never understand” how hard it is to really kick the habit. And honestly, I probably never will. From what I can tell, based on her addiction, as well as that of my father and my significant other, the lure of nicotine is terribly strong. It does not matter that the scent of tobacco stains everything she wears. It does not matter how many times my mom has tried to scare my sister with all the ailments and potential disabilities she could develop from a smoking habit. It does not matter that she knows all of this, because that is how true addiction works I guess.

I want to be as supportive as I can, but it’s admittedly becoming tougher by the day. She herself talks about how life was really hard for her, and that our mom was barely ever around when she was growing up. She sometimes gets annoyed with me, saying that she could have been working towards a medical degree too if only my mom was around to encourage her academic growth (she’s doing just fine work-wise though…I mean she’s making more money than most doctors ever will).

She mentioned that she started smoking due to peer pressure (which is weird to me, because I’ve always seen her as such a tough, intimidating person…), and she figured no one around the house would try to stop her. I was fortunate enough, in hindsight, to constantly have my mom there to supervise me and my development into the (arguably) healthy, neurotic asshole that I am today. I was lucky that our family’s financial situation was a million times better, just as I popped out into the world. I did not have to go to the high school my sister graduated from – instead, I ended up attending a much more competitive, high-ranking school (not to mention, most of the students I knew there were more interested in sabotaging my class rank than trying to get me to smoke). But it makes me wonder how much more susceptible I could have been to peer pressure and the lure of cigarettes, alcohol, or other types of drugs if my privileges were not available to me.

 

My Father, The Former Coal Miner

My dad used to work in the coal mines of West Virginia. This was before I was born and right around the time my parents got married. His father and uncles were coal miners as well and my grandfather wished for my dad to work anywhere but the mines.