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September 29th, 2018

If I was allotted only one word to describe the other night, that word would be Epic.

This world we live in is torn between love and hate, there hasn’t been a balance in quite some time. Just as we were getting to that place of celebrating our differences, that place of common courtesy and acceptance…the world went into a dark spin causing a split chain reaction.

However, an event occured on Saturday, September 29th, 2018 that placed thousands of people under one roof for one purpose and one purpose only…

To rock their little beating hearts out…to soak in that reminder that we are all car crashed hearts.

For 4 hours, age…race…careers…body type…gender…sexual orientation…disabilities…Non of these statuses mattered.

The beats soothed any pain while the lyrics stitched every broken piece.

Every look was met with a smile and every interaction met with kindness.

Every body jumped and danced while every voice sang until their lungs gave out.

On Saturday, September 29th, 2018… everyone was equal.

Long live the car crashed hearts crying on the couch while the poets come to life, fix me in forty-five… -Fall Out Boy

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Smile

You see me smile…

We pass one another on the street, make eye contact and exchange a friendly smile…

You catch me at a restaurant enjoying a bite to eat with my friends, laughter and smiles are rolling…

At the theater you see me hanging with my Ma’, busting up at the latest blockbuster comedy…

At the coffee shop, you walk in and take a quick glance my way. I’m on my laptop or phone and a grin makes an appearance on my face…

Family time spent soaking in those vitamin-d rays while waves crash. A sunset bonfire crackling and memories relived in tears of joy. I crack a smirk.

A smile is a tricky feature…it is a double agent. A smile can be genuine in one moment and act as a mask in another. Pain, depression, anxiety…these mental monsters reside behind the smile.

The tricky part…it’s almost impossible to tell the difference between the two.

You see me smile…

I’ve got troubled thoughts and the self esteem to match, what a catch… -Fall Out Boy

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Cinnamon Sugar Toast

Saturday afternoon…sitting at the table rewriting/ editing a few pieces from my current project and watching Triple X, my stomach suggests that I take a small break to grab a snack. While my eyes peruse every option on each shelve of the fridge, I pause my glance at the loaf of brioche bread and decide to make a couple of pieces of toast. I’m not sure why, but it just sounded so good.

Lightly toasted and buttered, I begin the process of selecting what to smear on this deliciously toasted treat. Cream cheese & strawberry jam…? PB & honey…?

Then out of the blue, my taste buds shifted into nostalgia mode…Cinnamon and Sugar.

As a kid, my Mom would sprinkle my toast with a mixture of cinnamon and sugar. It was that perfect little accompaniment to my scrambled eggs and fruit. Add a glass of juice and voila. This was one of my favorite breakfasts growing up (besides my Mom’s killer baked French toast).

So, I grabbed the container of sugar along with the jar of cinnamon and conjured up a perfectly balanced ratio of sweetness. Now, I am not one who likes a “punch you in the mouth” treat so I didn’t make it rain cinnamon sugar, I made it sprinkle.

That first bite…dude, let me tell you…crunchy buttery cinnamony sugary goodness… *yeah, I get a little excited about food lol*

For a moment I was 7 years old again….

Back to reality.

Ok, laptop…check, iced coffee…check, deliciousness on a plate…check, Vin Diesel kickin’ ass and blowin’ shit up…check.

Yep, this is my kinda Saturday afternoon.

You have a bazooka! Dude, stop thinking Prague Police and start thinking Playstation. Blow shit up! -Xander Cage

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New York

I’ll never forget that moment…the day, the time, what I was doing, this is a memory deeply embedded in my mind.

That Tuesday morning was a typical morning…getting up, dressed, breakfast was eaten then I began my school work. See, I was 16 and just began homeschooling due to losing my sight and being a full semester behind. In order to catch up and graduate on time my parents enrolled me in a charter high school. This allowed me to not only get caught up, but to finish school a full semester ahead of my class. This also ensured that technically no school was missed when needing to be at doctors appointments or while in surgeries.

Trigonometry, this was the subject that was educating my brain. The time was 9:17am, my thought process was interrupted by the phone. Three rings in and I answer it to hear my Dad’s voice on the receiving end.

Dad…”Hey kiddo, how’s your day so far?”

Me…”Pretty good, just doing some trig. What’s up?”

Dad…”Turn on the news kiddo, and prepare yourself.”

Me…”Okay….”

While the big screen picture was a blur, the voices of newscasters were crystal clear. Every channel, one breaking news headline…

A hijacked plane just crashed into one of the Twin Towers in New York.

My heart sunk into the pit of my stomach, tears welled up in my eyes, my voice brokenly asking my Dad, “Who did this?” Him replying with that word made me shake.

Terrorists.

As he told me to not worry about my schoolwork, to just take the day, I was in another state of mind. My young mind was trying to fathom how anyone could perform this horrible act, why anyone would perform this horrible act. Then my mind shifted to lives that were in danger, the lives lost. While I have always been told that I was the 16 year old going on 30, my mind just couldn’t handle the immensity of this tragic crime that my ears were absorbing. My heart was already in a fragile state, this just broke it right down the center.

My heart holds a special place for New York, the diverse culture, the people, the New York atmosphere is just beautiful. Back in 2006, my Mom and I spent a few days in NY, we signed up for a tour of Manhattan. Walking the city with a group, our guide sharing facts from historical to pop culture and everything in between. From seeing the infamous bull statue on Wall Street to Trinity Church. Along the way we made our way to Ground Zero. Standing there, I just froze. The emotional state I entered was unfamiliar territory, I was trying to soak it all in. The tour guide was speaking, however, all I heard was a buzzing in my ears. To also see the plaques, the faces and names of the brave humans who rushed in to help, to rescue. To see the names of those lost souls.

I have witnessed so many life changing moments in my 33 years of existence, However, none have ever compared to Tuesday, September 11, 2001.

Never Forget. ❤

In New York, concrete jungles where dreams are made of, there’s nothin’ you can’t do…These streets will make you feel brand new, big lights will inspire you. Let’s hear it for New York… -Jay-Z ft. Alicia Keys

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The “S” Word

This life is definitely not for the faint at heart. This life is a whirlwind of luminosity and darkness, however when that darkness sneaks in it becomes all we can see. The light seems burnt out and we feel as though there’s nothing left, that we have nothing left in us. This life, in all of its beautiful chaos, is worth living. đź’›

Never silence someone’s depression, anxiety or suicidal thoughts. I understand that these topics may be uncomfortable for you to discuss, but please remember…your discomfort is our reality…your discomfort doesn’t outweigh our lives.

Talk…listen…support. đź’›

I know who I truly am, I truly do have a chance…I’m fairly local, I’ve been around, I’ve seen the streets you’re walkin’ down… -Twenty One Pilots

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Do You Really Want to Know…?

You ask me that infamous question…”What’s it like living with a rare disorder?”

But, do you really want to know?

You don’t really want to know what it was like to be the kid who had six surgeries, endless doctors appointments, was bullied throughout school, or what it was like to lose my eyesight in high school and the ordeal that followed in order to regain it back. What it was like to think back and ponder the fact that I almost didn’t make it to my high school graduation. That two months before those honor cords were placed around my neck, I attempted to end my life.

You don’t really want to know what it’s like to have to unwrap and rewrap wounds when hopping into the shower, a process that takes about an hour from start to finish every morning.

You don’t really want to know what it feels like when a bandage slips causing the gauze to stick to the wound, what it feels like to rip it off in order to redo the bandage.

You don’t really want to know how much blood has escaped my veins or that my body is so accustomed to the physical pain that my tolerance for it is much too high.

You don’t really want to know what it feels like to be stared at as you’re going about your business grocery shopping. How others make snarky or belittling comments under their breath, they think they’re being sneaky, but my sonar ears hear every word.

You don’t really want to know how much energy it takes to make sure those ignorant comments just ping right off of my bulletproof exterior, or how many scars are on my tongue from biting back my replies.

You don’t really want to know how much creativity I drill into everyday skills so that I can independently live my every day life.

You don’t really want to know what type of mental damage occurs when you’re labeled as physically damaged. The dark thoughts that eat at your mind, the restraint to not take your own life away from your family and friends. How hard it truly is to hold back the midnight tears, to push down all of that social negative shit.

You don’t really want to know what it’s like trying to breakdown your walls and remain genuine in a world that breathes out their negative vibes.

You don’t really want to know what it’s like to see couples in love and know that it doesn’t matter how much you dream of being in a healthy, genuinely loving relationship, in the end it is just a dream. That the storyline of Love And Other Drugs or Me & You is just Hollywood, not inspiration to keep searching for your soulmate. To hold onto the hopes that there is a guy out there that will look right past the outer exterior, he’ll see me for me, a mere wish placed upon a penny.

You don’t really want to know what 24 hours of living my life consists of. You don’t want to know why I keep fighting, why I want to help others. You don’t really want to know the real me and that’s ok…

But, don’t falsely act like you want to know, that you actually care. That’s just wrong.

So, before you ask me what it’s like living with a rare disorder, make sure you really want to know.

Make no mistake, I live in a prison
That I built myself, it is my religion
And they say that I am the sick boy
Easy to say, when you don’t take the risk, boy
Welcome to the narcissism
Where we’re united under our indifference… -The Chainsmokers