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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

blogging, creative writing, death, life, writer, writing

Beating Flatline

The latter part of the year is nearing. Summer is phasing out as Autumn begins to slowly sneak in. September through the new year is my favorite season, from birthdays to the holidays, something about this time of the year makes my heart glow as if Christmas lights were strung around it.

A sense of magic is embedded into the crisp Autumn and Winter atmosphere, I’m grinning just thinking about it.

However, this part of the year also has a few “hold back the tears” dates sprinkled in. These dates, once heartbreaking, now represent a content nostalgia. Two anniversaries, one of life and one of death.

Your life is not your own, keep your hands off of it… -Sherlock Holmes

September 23rd will mark four years since that day I found myself sitting on the sand processing my test results along with the sentence, “I don’t know how it is that you’re still alive…” as the sun glowed a bright pink behind those purple cotton candy clouds…the day I found myself reminiscing down memory lane then pondering about all of the dreams that I hadn’t breathed life into yet, all of these glowing bulbs in my head that hadn’t yet been plugged in…the day I allowed tears to gush down my cheeks as my heart was drinking in the realization that it would never find its mate, that a genuine love would never be found, that a family would never be born in the future…the day I contemplated between once again fighting for my life or calling Grim to let him know that I’m ready to permanently sleep.

What is a beautiful life without a beautiful death… -MGK

I continue to contemplate if what I read is true, if in some cases we aren’t given another day of life for ourselves, but because someone out there in this chaotically beautiful world needs us. While I no longer want to end my own life, I did stop fighting for myself long ago. An unknown force keeps my lifeline beeping, I believe that I’m fighting for someone else, I just wish I knew who. This does indeed keep me up with the moon.

October 15th marks eleven years since my Popee passed away. The big “C” spread its toxic cells throughout his liver, taking him much too soon. However, my Popee also had Parkinson’s which was rapidly growing. That first year of him being gone fed my anger emotion, in a time where I needed him most he was taken away. Shit, two weeks after his death was hard, the feeling that was racing through my entire body as I read the birthday card he had set aside for me is a feeling that is indescribable. Oct. 15th flatline…Nov. 2nd “Happy 23rd Birthday kiddo!”. The bday money that was placed in that card could only be spent one way, at our favorite place, the ice cream shop.

Every Oct. 15th I smile as I flip through old photos. Frozen moments that have captured every adventure, from the beach to Disneyland. Every Nov. 2nd I order an ice cream, cheers to you Popee.

It’s been a long day without you my friend and I’ll tell you all about it when I see you again… Wiz Khalifa

Yeah, I do love this time of the year. It has a magic embedded into the atmosphere. A flatline that’s still beating being watched over by a beautiful soul.

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Dangerous Humans

If I were to ask you who the most dangerous type of people are, I’m guessing your answer would lie somewhere along the lines with murderers, psychopaths or possibly MI6 specially trained operates (I may have recently watched a 007 movie 🙃). Now your answers are considered correct, those are some very dangerous types of people, however, there is one other type of person that could be considered equally dangerous…

Those humans that don’t need other humans. That exclusive species that stopped needing others in there lives. They are completely stabilized and functional solo. This isn’t to say that they have no one in their lives, it is simply that those that reside in their circle are wanted not needed. See, when you eliminate needing someone in your life vs. wanting someone in your life, you eliminate the pain that normally would be inevitable if anyone should betray you or leave you.

Needing = walls down & attached strings

Wanting = guard up & no strings

This isn’t a recommended way of living life. It has been scientifically proven that we humans function and thrive better amongst each other. However, sometimes life has this not so funny way of throwing a monkey wrench into your world, ultimately breaking your world. So, sometimes the only way one can rebuild and restart is to practice the lone wolf life style. We want people in our lives, we just don’t allow ourselves to need them. Mainly due to past experiences that created new fears.

It’s just me, myself and I so I’ll ride until I die ’cause I got me for life… – G-Eazy

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Clarity within the Darkness

Tonight I want to share a piece of my existence with you. As you know I absolutely love the beach, however, that love extends beyond it just being a favorite place to visit. The beach is the only place that has ever felt like home. It’s the escape needed to find clarity amongst my cerebral thunderstorm, it’s the warm hug that washes a safe calmness over my bones. The beach has always been the only place where I felt as though I belonged.

The way in which I’d like to share my slice of heaven with you is to take you on a little journey. I want you to see the beach through my eyes, the way I saw my world back when I was sixteen, before the surgeries, before the light was reinstalled.

Now I am fully aware that your eyes need to be open in order for you to read this, so I want you to do me a favor…the next time you go to the beach I want you to close your eyes and truly see the beach through your other senses, through the darkness.

Ok so, you’re standing on the beach…now close your eyes. Take a moment to soak in your current surroundings through those four remaining senses. What do you see? Here, allow me to help.

Feel that…the cooling breeze softly brushing across your cheeks causing your goosebumps to raise into a “put your hoodie on” chain reaction. All indicating that the sun is setting. The slightly warm sand squishing in between your toes, those tiny grains softening the roughness of daily life off of those traveling feet of yours.

Taste that…the salt from the ocean intermingling with that cool breeze. That salty taste floating across your tastebuds.

Smell that…that crispness embedded in the breeze, the essence of the ocean mist calming your breathing pattern.

Hear that…the sound of the foam capped waves crashing in and out, the foam popping on the sand every time the wave returns to the ocean. The palm tree branches swaying in a swoosh formation as that cool breeze sneaks between the palm leaves.

Beautiful isn’t it.

I’ve always known what the beach felt like, but it wasn’t until after I lost my sight that I truly saw the beach.

(I’ve had surgeries to regain my vision, but every now and again I’ll close my eyes. Clarity within the darkness)

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Verbal Traffic Jam

Reason #723 why I love music…when the verbal traffic jam hits, lyrics rush in to calm the mental rush hour.

(Ok, I don’t think that I could actually ramble off 723 reasons as to why I love music, however it’s nearly 1am and the brain isn’t currently caffeinated at high enough levels to fully function. So, you’ll have to cut me a little slack. 👻)

My mind is currently feeling all of the feels, more prominently this emotion…

Wanna know where I don’t go
When it goes from OK to a oh no
When it goes from hi five to a low blow
When it goes from all five to a solo
Lemme tell you what you don’t know
I been down, so low
I was looking for something but denying that I found it
There’s an elephant sitting in the room
And I can’t find another way to tiptoe around it
I been doing greater good for a long time
But I can’t find any other way to give now
I been putting myself on the sideline
And it’s been time so I’m saying can I live now…” -Mike Shinoda

My heart continues to feel this emotion.. and it won’t stop. ( How do I make it stop?)…

You could be my someone you could be my scene
You know that I’ll protect you from all of the obscene
I wonder what you’re doing imagine where you are
There’s oceans in between us but that’s not very far…” -Puddle of Mudd

Well there it is, verbally expressed thoughts without speaking a single word.

Alright guys, I hope you have a good night or day and I’ll chat with you later. Time for a little ice cream and Netflix or Hulu…let’s see what looks good. Peace out. 🖤

I am Derra Sabo and I approve the above message 👍

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Seventeen

There you were, your motionless frame lying on the storm soaked ground. Your chest no longer breathing, your cerebral no longer pulsating, your heart no longer beating.

An unmarked body that now reveals the evidence of how the angel of death came about to kiss your forehead. In between your head and shoulder is all the proof needed, deep red life that spilled out from their veins through the small gash located on your neck.

Eyes closed, lips shaded a frozen purple and your pale flesh now corpse like blue. You exhaled your last breath much too soon. A dizzying question fills my eyes with tears. Did this mortal warrior fight with every ounce, a battle well fought to the inevitable end or did the warrior that now lays on the ground enter into a suicide mission?

Externally I shed a few respectful tears before doing what needs to be done. Internally I’m shouting to the point of combustion, feeling angry that you’re gone. Angry with the nearing realization that you may have simply given up. My six and a half sized feet want to run off the stabbing emotions, my mouth wants to swear. But, I can’t. Now is not the time and even if a few selected moments were awarded to do so, I don’t deserve them.

Because the black truth is that I know why you met with your demise. I know who sliced your neck. Unfortunately it is not Saturday night and we are not playing a game. This is not a case of Who Done It or speculating that the murderer is Colonel Mustard in the library with a knife.

The person with the knife, the one whos hands are now eternally stained with your blood, the murderer… it’s me.

You died because of me… because I left you to fight a battle that you were unprepared for, a battle that you were unequipped to fight. Blinded by the tough smile that you were born with, I pridefully figured that you could handle life and what it threw your way. My clouded assumptions distracted my clarity. Only after your final cry for help escaped into the skies did I pay attention. However, a final cry it was not. By the time I reached the battlefield the war was over, the rain began pouring and you were laying inside the inviable chalk outline. Every broken piece, every internal gash, every external wound… all marking every time a single S.O.S was shouted. And I selfishly ignored them.

Time to finish what you started. With a shovel in hand the dirt is dug up. Seven feet below is where I lay you to rest. This silver I.D. bracelet is what I place upon this fresh grave. A moment of silent apologies and a promise that my sole mission in life is to carry out your legacy. Ensure that every scar was well-earned and that your story protects, possibly even saves fellow souls sending out their S.O.S.

Years have blinked by, but your memory lives deeply. I, present, lay here in the dark feeling sadly nostalgic. I’ll never forget you 17.

Save your razorblades now, not yet….we’ll win, but not everyone will get out…. -Twenty One Pilots

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Words vs Actions vs Art

Sometimes…

Sometimes words don’t posses the capability to show a person’s heart, mind or soul…

Sometimes actions truly do speak volumes louder than the written language…

Sometimes a physical photo, a captured moment can assist in expressing what one’s mind, heart or soul looks like…a person’s interior, when all you see is the exterior…

My mind…

My heart…

My soul…

You don’t know my brain the way you know my name…you don’t my heart the way you know my face… -Twenty One Pilots