“The two most important days of your life are the day you were born and the day you find out why…” -Mark Twain
It’s that awesomely insane time of the year when birthdays, holidays and other insanities all clash together, my season of organized chaos 😂
This time of year also means adding a few levels of advocating for important organizations. During September, support for mental health awareness and ending the continuing stigma that surrounds it bumps up with it being National Mental Health Awareness Month and National Suicide Prevention Month. As well as a week in October dedicated to ending bullying and now this final week in October being EB Awareness Week.
All of these issues I hold close to me for several reasons, all linked in my mind and heart to not only help those who know the struggle, not only to have those uncomfortable conversations, but also to shine a light in a rebel kinda way.
While I absolutely love being a voice in different aspects of life, admittedly, I felt exhausted last year during EB awareness week. I felt drained and uninspired, resulting in not posting any videos, pics, info or really participating in any of it. I wanted nothing to do with it, this made me feel as though I was the worst person in the world. I was born with EB, I have lived with this rare disorder for nearly 35 years. I’ve seen what others go through, how so many pass away before they even turn 10 years old and here I am not wanting to spread awareness. I just had nothing in me, even though I was going through some things, I felt like those were just excuses. I also wondered what others might say…
Eventually I did post a blog about feeling so uninspired entitled Uninspired Walking Billboard.
Being so burned out made me realize that this uninspired feeling was bound to happen. When one is born with a disorder *be it physical or mental* it’s as though we are expected to live our lives a certain way, that we are supposed to act a certain way, that our entire life and self is whatever our disorder is.
Our world is bubble wrapped, lined with others controlling our decisions. “No, you can’t do that.” replaces “Ok, let’s figure out how we can make that happen.”. In a sense it is our parents, doctors, medical facts and statistics that run our lives, resulting in us morphing into the person we think we are supposed to be rather than becoming the person we want to be. Luckily, my parents were not the ones to stifle who I wanted to be. Trust me, I’ve had and have my fair share of bumps, bruises and what I refer to as, “where did that come from?” 😂
Another aspect attached to feeling so uninspired was from a few comments DM’d to me about how I should be donating to EB organizations rather than suicide Prevention organizations. Apparently, they saw my posts and blogs writing about suicide and mental health. They decided to criticize me for advocating for other health issues other than EB. So, I began feeling like I was advocating and donating wrongly. I’m sorry, but seriously! Last I checked, I can spread awareness for any organization I choose and donate my money where I see fit. And side note, physical and mental health coinside. You can’t have one without the other, they’re attached.
All of this just became overwhelming, I felt like I didn’t even belong amongst the EB group.
Between becoming lost with everyone else’s feelings and decisions, becoming lost within your own disorder…it’s just not right.
Yes..I have EB, but I am NOT EB.
I am a Cali girl who drinks a lot of coffee while listening to tunes and loves creating adventures with my people. I splatter my thoughts onto my laptop, bandage them up a bit, then send them out into the world.
I am a human being with an interesting life, I am a girl just trying to live her best life.
To you the reader…we are all people, different yet similar. We should be celebrating our differences not judging each other. We all have a disorder we are dealing with, some seen and some not. It’s all about helping each other out, lending a kind ear, a kind shoulder…a little more human kindness. We are who we want to be, not who are circumstances expect us to be.
“You can never take my heart, I’m the ink and you’re the headline…” -Blink 182