Genuinely Derra. Born With A Rare Disorder.
Posted on 07 December 2018
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.
EB, Epidermolysis Bullosa, is a rare genetic disorder that is a lack of collagen in the skin. There are several types of EB varying in intensity of wounds and bruises. EB can also affect the inside of the body as well, causing some to have swollen throats which results in getting a G-Tube and vision loss (I lost my vision in high school, but thankfully found a specialist who was able to restore my vision with an Amniotic Membrane Transplant). Some also lose mobility ending up in power chairs. 1 out of every 10,000 are born with EB. The life expectancy of a baby born with EB is 14 years, those who do make it past that age don't live past 25 years of age. My mom was told that I wouldn't live past the age of 14 when I was born, I just hit that 34 mark in November.
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, and 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.