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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

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Shame On Me

Hey guys, one of my best friends and I collaborated on this blog idea. Brandi and I wrote about self love. Please make sure you head over to her blog and check out her piece & amazing work. She is such a talented writer.

Something ain’t right inside of me… -MGK

Shame on me for having freckles that are sporadically speckled all over my body. Shame on me for having scars that intermingle with certain areas on my body. Shame on me for not having a perfect human form that is beautifully tan and unblemished.

Shame on me for having a physical disorder that has left behind evidence of surgeries. Shame on me for being a size zero in jeans, I must having an eating disorder, right. Shame on me for not being the perfect specimen that society prefers I’d be in order to be deemed acceptable.

Shame on me…

I became such a strange shape tryin’ to fit in… -FOB

Shame on me for finding contentment within myself, with my body. Shame on me for loving my porcelain freckled skin. Shame on me for being proud of my scars, for they are the proof that I have survived many battles, both physical and mental. Shame on me for tarnishing my body with inky pictures that describe certain parts of my life’s story.

Shame on me for having an appetite for all different types of cuisine, including delicious carbs. Shame on me for being born into this world damaged and loving that fact.

Shame on me for loving humans for who they are, for their intellectual minds, their kind hearts and beautiful souls. Shame on me for not judging someone because of their imperfections.

Shame on me for going against the grain, for thinking outside the box, for standing up for what’s right and shame on me for starting a fire and continually adding fuel to it.

Shame on me…

Sing it for the boys, sing it for the girls…sing it out for the ones that will hate your guts… sing it for the world…MCR

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Rebel

It’s crazy… I feel like more of an outcast in a community that I’m supposed to feel belonged in than I do as a human residing in the rest of the world.

Judgement is felt more amongst “my people” than it is from those who see me purchasing my Starbucks and shopping at Target.

I find myself more and more curious as to why that is…

Maybe it’s because I am a rebel.

The one who chooses to defy the statistics…the one who chooses to share my story in hopes of helping others rather than play the “victim” to gain free advancements.

Maybe it is because I live my life according to my own views rather than remain trapped inside ORs as the surgeon’s guinea pig because he knows what’s best.

Or, maybe it is mainly because I choose to find the silver lining at the end of a shitty day, knowing that tomorrow is a fresh start, rather than pull everyone into my shit storm so they’ll feel sorry for me.

So, if I don’t fit into “your world” then where do I fit in…where do I belong…

I fit into the smiles and laughter of my family and friends. I fit into the star studded universe where my Guardian Angel resides, watching over me. I fit into these bones of mine that are made up of molecules from my ancestors. I fit into the empty space inside of my future love’s heart.

I belong right here, amongst the sand, the ocean and this cotton candy sunset.

I am a rebel.

Jumpsuit, Jumpsuit cover me… -Twenty One Pilots

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Alls Fair in The Ripple Effect

Choices…

That word above is one that we practice on a daily basis. Life is strung together by the series of choices we make, each one altering the direction we take on our paths.

You…

You are in charge of every choice you make, you are the only one who chooses what pebble will create your life’s ripple.

I…

I have made both positive and negative choices throughout my life thus far, each shifting the effect of every ripple. The most important and impactful choice I have ever made was to never allow others actions towards me taint my feelings towards the world. Tainted emotions equals vengeful behavior. As someone who was bullied throughout school, as someone who was dealt a somewhat difficult situation in life, I could have easily chosen to allow the anger and hurt that was a constant during that time to poison my outlook and actions towards society. I could’ve easily taken my past and morphed it into an infinite excuse in order to disrespect and pull everyone into a bitter pity party.

But, I don’t.

Why…

Because I know first hand what it feels like to be mistreated, how it eats at your brain causing your confidence and self-esteem to diminish. I know how quickly the hurt, the depression, the worthlessness and the tear filled pain fills into every nook and cranny of your body.

I wouldn’t place nor wish that upon anyone, not even my worst enemy.

I know how just the mere thought of revenge can suck up your time, your energy. How it becomes this black toxic that invades your veins, you’ve become Peter Parker in SpiderMan 2.

Having that amount of pain residing within my bones nearly snuffed out my life candle. Never again do I want to feel that shitty.

I choose to find the silver lining, the be a better version of myself, to ignore the arrogance of my peers. I choose which battles are worth fighting, I carefully select which pebble I toss to create that ripple.

No matter what curveballs are thrown at you…No matter how many incomplete passes you encounter and No matter how many humans throw a dirty punch at you in attempts to knock you down, you have a choice as to how you react. You choose what type of energy you place towards others, towards the world.

You have a choice…

So what’s it going to be…?

Second things second don’tcha tell me what you think that I should be, I’m the one at the sail, I’m the master of my sea… -Imagine Dragons

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Bad Rep…

Ok…I have a bone to pick with some of you humans out there. I am not one to rant, especially online, but today I’m making a virtual scene and I hope you pay attention.

Now I’ve said it on a constant loop that we are ALL born into this world with a glitch. Whether it is a physical, mental or an emotional glitch…we are all broken in some way. Now those of you who know me or have followed my blog or social media for a while now know that I was born with a rare physical disorder. Yep, I was dealt that curse card coming into this world and given a life I never asked for. However, I took what I was given, broke the rules I didn’t fancy (which was all of them) and made this life my own.

Throughout my life I have had many labels slapped on my forehead, one only ever really tore me down, most just ping off my bulletproof skin.

And now this happens… there is one label that recently caught my attention and it’s, well, pissing me off a bit.

Why you may ask. Well, because this label was created by those in the “physical disorder world “.

Recently I was out shopping, doing my own thing and a few different people came up to me complimenting me on my positive attitude. I responded by thanking them and wishing them a great rest of their day. This has been happening more and more, which nabbed my curiosity. Turns out that there are quite a high percentage of those with physical disabilities who are only capable of complaining and acting as if the world owes them. You go around causing intentional scenes in public or online everytime one small snafu is tossed into your day. You think that because of the life you were dealt that this world and the people in it are to accommodate you 100% of the time. You’re making your problem their problem. You’re making your problem my problem. You’ve created a bad reputation for the entire “physical disorder” community.

KNOCK IT OFF!

I understand that a life with a physical disorder is hard and that depending on the severity of ones disorder, well life can be down right daunting. It’s an endless battle we fight. But, guess what?! Everyone has an endless battle they’re fighting. Everyone has something that they’re dealing with. This world thrives off of balance. There are going to be times when the world is accommodating towards you and then there is times when you need to be accommodating towards the world. Be grateful for the times when kindness is shown towards you and have common sense in the times when it’s not so much shown.

Yes, there are certain times when you should speak loudly and right a wrong. But, there is a line between standing up for something and just flat out bitching, throwing a tantrum everytime things don’t go 100% your way. You have labeled all of us “one of them”.

“One of them”…

I am not one of you. Do I have shitty days once in a while? Yes. Do I have to get creative with certain life skills? Yes. Are there times when frustration hits and I wish I didn’t have this kinda life? Yes.

But, I don’t make my problem everyone else’s problem. I don’t make others feel crappy because I feel crappy. I don’t take to social media to bitch or slam on others because the world didn’t accommodate the way it was “supposed to”.

The next time one small thing doesn’t flow your way, think before you make a public or virtual scene. Perhaps in that moment the universe is telling you that it is your turn to do a little accommodating.

Enough labels are being slapped around. Quit adding fuel to the fire.

Give and take people!

PS…if you plan on twisting my thoughts and leaving a butthurt comment go right ahead. You’re only helping to prove my point.

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3 Quotes in 3 Days: Day 3

This is the last quote for this mini series. I really enjoyed this challenge, I believe quotes not only inspire our minds, but also aid in relaying our heart’s message when our lips become too apprehensive to speak.

Now this wouldn’t my blog without sharing a lyrical quote. Today’s message is from a punk rock legend, the lead singer of a band that I’ve been a fan of since I was a 12 year old youngster. The one and only…Mark Hoppus.

Who musically inspires you?