Well hello there world, it has been some time since you and I have sat and chatted. Today I have one purpose and one purpose only, to lick all the sugar off of these coated theories and misconceptions. This is a message for all of you humans residing on this planet and to all you professionals who believe that you know better than us. So, grab yourself a refreshing beverage and get ready because I’m going to steal a few of your precious moments and make you pay attention, eyes wide open.
Humans…when you look at me, from first unknowledgeable glance, what do you see? My hypothesis is that all you see is a walking “Disability”. You may not know what it is I exactly have, but that doesn’t matter, right.? Your deduction is acceptable, I mean between the scars on my arms from surgeries and these two fists that have been interchanged for hands, I too would assume the same as you. Please don’t search for any offensive tiny print in what I’m about to say…You’re Dead Wrong!
Never assume without solid proof. If you must assume, then I dare you to swap shoes with me and I’m not talking for just a mile. While one can learn a lot from a mile, we’ll need 30 days for you to be able to get a mere taste of how my life spins and who I am. This journey I’ve been given is one hell of ride, no doubt about it, but you need to be prepared. I hope you have thick skin and steel balls sweetie because you’re going to need ’em. Be prepared to decipher whether comments are kind questions that should be engaged into or ignorant bullshit that calls to simply be ignored. Be prepared to be stared at…ALL OF THE TIME. Are there shitty days, days were you just don’t want to do the whole “adulting”? Oh sweetie, you have no idea, but it doesn’t matter how treacherous the storm may be, this world spins on its axis’s and your life needs to be lived. Repeat after me…Concealer, Caffeine, Hoodie, Headphones, Deep breath and out the door you go. You can cry or scream, whatever your preference, after the days over. I hope your well of patience is bottomless and that you have a hunger for creating solutions because you’re going to need those skills as well. Like Thomas Edison and his brilliant light bulb, there will be times were it will take you 2,000 times before you conquer a challenge. Lastly, yet not lastly, there will be moments when you’ll find yourself lost amongst the invisible markings that others have burned onto your body. Their labels will try to drown you within your own cerebral storm, but don’t let them. You’re going to have to fight those mental storms and trust me when I say that they are much strong than any physical storm that may hit. Those mental waves are larger in size and have a higher crash impact. You’ll be pulled under into deeper depths causing you to have to swim harder to grab a breath of fresh air. When those storms slam in remember this, you are NOT a victim of your circumstances. You’re only a victim if you allow yourself to be one.
So, shall we swap shoes? I hope you like wearing Converse, Vans and boots.
Take a look in the mirror, And what do you see, Do you see it clearer, Or are you deceived, In what you believe…. -Rag n Bone Man
Okay, your turn Professionals! I have a few comments for a few of your so called “statistics”. I’ve never said anything before because I didn’t want to offend anyone, but I’ve held this all in for too long and like the Hulk I’m ready to Smash! First statistic: Our skin is so fragile that we cant be hugged. Hugs hurt. What!? Are you serious! Do you realize that anyone who doesn’t know what EB is and reads this will automatically assume that we’re these bubble kids that no one can go near. Furthermore, EB has varying types and subtypes. You cant just slap a generalized statistic like that on all of us. Newsflash, I have DEB and guess what, I come from a family who is so hug happy is not even funny. My parents, siblings, relatives, friends and I are always giving out hugs. I used to roughhouse with my Dad when I was a kid. Water gun fights, amusement parks and whatever other adventures with my siblings. Yes I would gets bumps and bruises, wrap them up and move on, that’s how it goes. I understand that not everyone’s situation is the same. Do you though? PS, Sex doesn’t hurt and y’all know what’s involved with that. 😉
Second statistic: Most of those born with EB won’t live past the age of fourteen. Again, not everyone born with EB is born into the same situation. These generalized labels you continually slap on us is so misleading that it makes my stomach turn inside out. I was one of the first babies born with EB to be apart of a trail group. This was a time when EB wasn’t known about. After two weeks of the doctors running their tests, their conclusions were that my life span wouldn’t progress past the age of fourteen and that my brain thought process wouldn’t progress past that of a toddler. The doctors wanted my mom to have me institutionalized. All of their findings were concluded on very little knowledge.
Derra Nicole Sabo: Born Nov. 2nd, 1984 – Died: No date found, I guess she’s still kicking. PS, IQ is a touch higher than a three year old’s 😉
You can’t scare the shit out of these parents with your generalized statistics. Whether you’re born with EB or some other disability, kids deserve to be kids. I know that so many aren’t out there causing chaos in the world, that they are stuck in hospital beds and hooked to machines and that breaks my heart. I was once that kid who spent her school breaks in hospitals, having surgeries. But, one’s situation doesn’t mean the rest of us are cloned in that same manner.
EB is horrible, no argument here. Life is hard, again no argument. But, guess what? Any disability is horrible, they all suck. Whether your disability is physical, mental or emotional, we ALL have something that we’re dealing with. And life, life is just hard period. There is always someone who has it worse than you do though. The storms make you appreciate the sunrays.
To those of you with EB pleases remember this, EB is a compartment of what makes up your life. EB isn’t your entire life. EB is NOT who you are. You are who you are and in the end, you have a right to live an amazing life. You have a choice.
with every ounce of my blood, with every breath in my lungs, won’t stop ’til I’m Phenomenal… -Eminem
Some may say that I have no right to go against the professionals. Some may say that I don’t appreciate all of the work and research being done by them. You too are wrong. I appreciate all of the countless hours being spent researching towards a cure and I whole heartedly hope that one day a cure is found. I also appreciate all of the doctors/ nurses who care for their patients. I have had and have some incredible doctors who have stitched me up after a battle with life. I am just saying that you can’t say we’re all the same. I am saying enough already with these generalized labels. And I believe that 32 years experience of living with EB entitles me to speak my mind. If you feel offended by that well then I am sorry. But, I am only human.
PS. the only labels I allow on my body are my tattoos.
We are all warriors… We are beautiful… We are all bold… We are all badass… and we are all in this together.
Enough with the labels… Enough with being outsiders… Enough with these damn pedestals y’all keep putting yourselves on.
We are humans living our lives on this great big earth. Be kind, be understanding, be compassionate. Everyone’s journey has storms.
Pain…oh let the bullets fly, oh let them rain…my life, my love, my drive they came from pain… -Imagine Dragons