about a year ago, i got this cough. this cough turned into the worst flu-like symptoms i’ve ever had. that turned into a fever i couldn’t control. all of this turned into meningitis. for folks that don’t know what meningitis is, i’ve posted some links with insanely good information and articles.
i’m often heard telling people that i used to be normal. i didn’t used to be like this. that not that long ago, this wasn’t me. this, this wasn’t my path and wasn’t my journey. have you ever felt that way? that you’re just on the wrong path or the wrong ride and that somehow things have gotten mixed up. and that the rest of the world, they just don’t understand? a friend of mine once said to me:
“your identity changed overnight. you had to adapt to so much and figure out how to operate in a world that wasn’t designed to help you out.”
for the first time since everything happened, i felt like another human understood what it was that i felt inside. the anger, the frustration, the hurt – it was all because everything just changed. i was no longer able to be the person from ‘before’ but i was still expected to be the same. knowing that the world we live in isn’t designed for people who have disabilities or differences because it’s designed for people who are perfect. and why?
so, i decided i didn’t want to be mad. i don’t want to miss who i used to be. i want to understand. i want to look forward to what i can do now and not what i can’t. because being angry is really hard. it’s really exhausting. and i just don’t enjoy it.
so, i’m going to spend time understanding how to live with what’s wrong with me. understand how it happened. understand all of my journey that created the person and not just this brain. understand how others are also struggling. understand how i can help them and help ease the struggle of their journey.
because as identities change and the rest of the world fails to embrace that change, understanding how to operate is necessary.
you’ll find more about my journey, my disabilities and what i’m doing now in future posts. for now, be well. laugh as often as you can.
as it turns out, everything changes. what i’ve realized is, you don’t know you’re asleep until you wake up, just as you don’t know things are changing until they’ve already changed.
change is hard. life is hard. even as i write this, i’m struggling with my own sense of self and coming to terms with what was, what is and what may never be. we allow ourselves to be all-consumed by an ever-present “what if” and overcome with the what never was. so, let me start here:
when i was little, i had big dreams. i had big plans. i had ideas of changing the world and making things happen. i wanted things not just for myself, but for those around me. i imagined myself in this far-off land, taking care of sick and dying children and developing new cures for diseases. i wanted more. i wanted the things that my parents could never give me. i wanted more than poverty, child abuse, too many children and too little love made in our tiny shack. i wanted more. i would have more and i knew it.
i worked hard – harder than most people i’ve ever known. i avoided everything i came from. i ran from the life i knew to a life i wanted. it felt good. until i got sick, i don’t think i realized that i was running.
my brain changed overnight. my speech changed. my abilities changed. i wanted to scream to the world that i was still there. i wanted people to know that i still could – i could still be the person i set out to be. but i didn’t believe it anymore. maybe i still don’t. but i need to. i need to know that person still exists, somewhere, deep inside of me – there has to be a shadow of that person, right?
so, as it turns out, everything changed. i’m not the same anymore. maybe that’s ok. maybe it has to be ok. either way, it still changes.
i’m the youngest child to the youngest child. neither mothers wanted another youngest child. life had other plans for both of them.
this is how my life started. i grew up with so little that saying i had the ‘clothes on my back’ is often overstated. the life we had on that dirt road so many years ago seems like so far away and so distant. those kids – they’re just memories to me. i often wonder what made times like they were but remember that it’s over. that was then and this, this is now.
my siblings and i, we were all we had most of the time. food was often scarce. money was in short supply. and love wasn’t in abundance in our home. i never saw my parents have any love, compassion or gratitude for one another nor did i see them share those feelings for their children. the way we survived those years was by laughter, hiding and learning how to fit in while being taunted for how poor we were. children could be heard teasing us and saying ‘stay away from them, they’re poor’.
so, this is how my story begins. i’m the youngest child to the youngest child. i grew up on a dirt road in a house not big enough for two but holding more than eight. running from the devil and falling asleep to the sounds of my own heartbeat in my ears. a child in want of love and in search of freedom.
my life never really ended up the way i expected it to. but my life did turn out a way that i enjoyed. man, it’s been a hell of a ride. but, this is the before.