Hello gorgeous world. How are you? Me? Well, these days I find myself at an interesting intersection in my life. How I came to this particular point in my life, I’m not quite sure yet. It’s this crazy feeling that something big and important is about to shake up my world, I just don’t know how, when or what this turn of events is. I simply know that something’s coming, the so called “calm before the storm”. The odd thing is that I’m ready for whatever it is, which for me, is a big deal. I am someone who feels the need to control every aspect of my life. I have narrowed it down to two specific reasons on why I feel that I need to control everything. Certain moments that “San Andres” my world and the fact that I spend everyday ripping off this glowing label that’s been stitched over my name. It’s like living the life of a broken record.
Every major quake that disrupted the peace has resulted in walls being built and trust becoming a rare commodity. As much as I wish I could be an open book I remain a museum artifact. Past lessons learned keep my heart from being stitched on my sleeve for the public to view and my mind is stuck in cruise “control” mode when it comes to deciding whether to turn left or to turn right.
When it comes to that glowing label I mentioned, I hate that damn label with a passion. It’s a label I never asked for, but I feel sometimes that certain eyes come down from the hills and judge me for the fact that I won’t wave the white flag and just accept that I’m “disabled”. I have a feeling that I may upset or straight up piss off some people with this section of my blog and I would just like to apologize in advance because that is not my intention. This is purely me unleashing a few thoughts that I have kept contained inside my mind, well, until now. As some of you may or may not know, I was born with a rare disorder called Epidermolysis Bullosa or EB in lemans terms. I believe that when a soul is born into this world with a disability, it seeps into every aspect of who we are and what our life is. Like a cloud permanently hovered over our heads, constant storms of sadness, depression and sympathy drowning our lungs. A life consisting of Doctor’s offices, hospitals, scheduled surgeries, bandages, needles, casts, G-Tubes and everything all included. Daily moments center filled with screams and painful tears. I sit here at my laptop and type to you that yes, EB flat out sucks and I wish upon every shooting star that this monster didn’t exist. But, me being me, I refuse EB in every way. I refuse to spend my precious time in waiting rooms. I refuse to stay in a world where my headphones are super-glued to my ears while tunes vibrate my eardrums temporarily distracting my mind from the fact that this is surgery number 4. Lyrics numbing the pain of the all too realism that I was born into this world broken and I will forever be cemented in a life of a human guinea pig that doctors run test after test on. Sleepless nights in hospital beds, no thank you. At a young age I came to the conclusion that no amount of meds or surgeries was going to cure my EB. I hope there is a cure created one day, however I know it won’t be in my lifetime, so I decided at the young age of 10 that I didn’t care what people thought, I was no longer going to live the life sentence that came with this poisoned label. I understand that everyone’s situation is different, so no judgment is being passed to those who are living the “EB” life. I’ve driven down the road that led me to my inner darkness. I’ve visited all its major monuments. Thinking that being different is bad and that I’m a freak who doesn’t belong anywhere. I’ve stayed at every hotel located in darkness: Confusion, Sadness, Anger, Depression and Suicidal Station. It took me a long time to find myself and the road my life needs to be on. Part of finding my contentment was denying “EB”. I’m not swimming in the river of denial, I’m simply focusing my vision that EB is a small part of my life. It’s only one card in the hand I’ve been dealt. EB is not who I am, it doesn’t define what makes me “me” and it in no way defines how I decide to live my life. I have taken my EB and made it my bitch and it won’t ever reverse because I won’t allow it to. Too much white noise confuses our minds into believing that this disability is our death sentence. The static wants us to wave the white flag and give in to its toxic depressing way of life. My response to that…. the finger.
We are all born into this chaos with some type of disability, whether mental, emotional or physical… we all have a debilitating ring trying to disrupt our sonic hearing. So no, I don’t feel bad for myself or my situation and I don’t feel the need to use my story in an exchange for sympathy or pity. Why not? Because like I said earlier, we all have a disability and I know that there’s someone who’s situation is worse than mine was or ever will be. The one wish I do have for all hearts residing is that you find the silver lining of every stormy day because concentrating on the negative will lead you down a pessimistic life. And take it from me, a negative life will eventually drown you and now you’re praying that the defibrillator will shock life back into your “dead” body. Choose to take your story and use it in a positive manner to breathe life and happiness into your life and others.
I’m sure that this isn’t where you thought this blog was going to turn, but I love to throw people off once in a while 😉
Back to what I was mentioning from the opening gate of this blog, I know something big is about to shake up my world and even though I have no idea what it is, I’m ok with that. The fact that I’m not allowing this feeling to drive me completely crazy is a growing moment. It’s a welcomed distraction. I have learned that there are moments in life where the only control you have is the control of letting go, being patient and allowing the outcome to unfold on its own.
Until next blog… Love Derra ❤