Uninspired Walking Billboard

I’ve been trying to write this blog for a few days now. Thoughts were jotted down then frustratingly crossed out. The last week of October is EB Awareness week. Seven days where factual posts and personal stories are trending with the attached hashtags. In the past years I have posted blogs(such as I’m Only Human) and videos, I’ve shared medical facts/ statistics along with my personal story.

However, this year I am at a loss as what to write about. The feeling of repetition is screwing with my thoughts. In a sense, I feel as though I am obligated to represent, obligated to post and share. This obligation is somewhat stressful these days, it has taken over who I am. This weight is suffocating…

Yes, I have EB, but it is a low level of intensity and only one part of my life. EB isn’t the defining definition of what my life is or who I am. EB doesn’t own me, yet this life of living as a walking billboard has sucked up any existing inspiration.

Being that billboard is a heavy weight to carry, that obligation extends out to not wanting to let others down by not posting awareness themed posts like the Mad Hatter. See, I don’t want to let anyone down, but if I were to post just to post then that uninspired disconnect would glow vividly within my words. This equation is crushing my internal world.

I’m so sorry that the content of this blog isn’t what you expected or want.

I’m tired of tending to this fire, I’ve used up all I’ve collected, I have singed my hands… -Twenty One Pilots

Generation Wise

Reminiscing the lessons taught while planting colorful life into the garden…

Reminiscing the wisdom embedded into every drop of ink that resides behind my right ear…

Remember, that while one should work hard building their career, remember to take time to have fun. For when you’re 80, sitting on your front porch sipping on that iced tea, you want to have endless memories not endless regret…

Reminiscing every time I dug too far inside my head as the doctors chose their choice of scalpel, yet you were there to calm my young mental anxiety…

Reminiscing trips to the beach. Every sun filled day and bonfire filled sunset. Sand, ocean and family. The place I said farewell to you, the place I go to talk to you…

Reminiscing the times spent sneaking off to the “hardware store” to enjoy a scoop of butter pecan…

Reminiscing holidays, tutoring my mind with Algebra and your date nut pinwheel Christmas cookies…

Remembering that day you left this planet, an illness riddled body that Cancer attacked while Parkinson’s shook your bones…

Remembering the angered tears that drained from my broken heart as the family said their goodbyes…

Now, today…eleven years and I take today to pay tribute to you, a legend that was my best friend…

A life lived as a Son..Brother..Friend..Soldier in the Navy..Husband..Father..Businessman..Grandfather..Wise Legend.

Find your grandparents or someone of age, pay some respect for the path that they paved..for life they were dedicated, now that should be celebrated…

-Twenty One Pilots

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

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

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

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

I am a Sick Girl

Who am I? This three worded question seemed so daunting and unanswerable for most of my life. Far too much time was wasted tearing myself apart in trying to be what everyone else wanted me to be, too much time was lost staring into the mirror at an unrecognizable reflection.

My name is Derra and I was born with a rare disorder, EB. From day one of entering into this beautifully chaotic world my forehead was engraved with the “Damaged” label and just as quick as I was awarded a birth certificate, I was also cursed with my death certificate. Fourteen, that was the amount of years the doctors and statistics allotted to me as my life span. From day one my Mom could tell that I was a fighter, that I would outlive all of those so called “statistics”.

Growing up is hard enough, especially in this day and age where hate seems to be outranking love. Throughout school I was teased and bullied, I was labeled and torn apart, all because of this curse I was born with, all of because of certain circumstances that I had not one ounce of control over. I knew that I was born different, but aren’t we all? I knew that I was born broken, but aren’t we all? Not one of us was born into this world perfect. Whether it is physical, mental or emotional, we all have a glitch.

It’s crazy how we are able to understand and apply the fact that “perfection” is an unattainable concept yet we can’t fathom the fact that there is no such concept as “normal”, that we are all “different”. Being Different is looked at as a downside, being different means that you don’t fit in, you don’t belong.

As a kid I loved that I was different, but I could never understand why other kids bullied me for that. As a teenager the bullying escalated causing a storm to build inside of my mind that I wasn’t in any way prepared for. Depression hit hard, suicidal thoughts hit harder. I morphed from being a happy, nerdy girl into a pain filled teenager. Days were spent simply going from class to class, dodging certain teens. Nights were spent silently crying myself to sleep, silently praying that I wouldn’t wake up the next morning. Two months before graduation, I took it into my own hands of ending the pain that saturated my bones and veins. I didn’t want to die, I didn’t want this world to think that it was victorious with my defeat…I just wanted to stop hurting, to stop believing that I was damaged, that I was worthless. I just wanted the pain to disappear.

Even into my early twenties, depression still lurked about. A toxic concoction of zero confidence, bad relationships, health issues and still with the fact that I couldn’t recognize my own reflection made for one messed up human. I was unresponsive to life, something had to give. Three months before turning Thirty, Death and I came face to face again. Death was one aspect of life that I never feared, he and I had already met a few times previously, so we were already well acquainted with one another. This though, it was real, a different real. A grab you by the heart and pull the plug kinda real. Your eyes open differently when your life is being held at a metaphorical gun point. The news broke me down in a Denny’s parking lot, my life replayed itself two days later while in the presence of sand and ocean.

I was born with a rare disorder, a disorder that should’ve taken my life a long time ago, yet here I am. I have beat every medical statistic thrown in my face. I survived through a childhood filled with endless doctors appointments, surgeries and nightmare filled slumber. I survived those teenage years filled with bullies, depression, losing my sight and going through more surgeries to get it back (that was a crazy two years, my world literally went dark), suicidal thoughts and one scary as shit attempt. I spent my twenties rebuilding myself with the pieces I had left and adding a few new ones. Along the way revisiting my dark place due to the loss of my Popee and one hellish relationship I should’ve never been in. Then came that one final storm that inevitably hit hard, causing me to believe that this was my end. All of these trials, these infamous curveballs that life through at me and I actually made it to Home plate. I guess Death isn’t truly quite ready for me.

So, who am I? I am Derra Sabo, a writer, a daughter, a sister, a friend, a foodie, a beach baby, a forever fan of Fall Out Boy, a coffee addict, a bookworm, a music maniac… a 100% Grade A California chica who was never meant to live, but did. I am a beautiful disaster.

Girls like her were born in a storm. They have lightning in their souls, thunder in their hearts and chaos in their bones… -Nakita Gill