#lifewithdisabilities

I don’t do this. I don’t blog, and use the Internet as a platform for a diary to house my thoughts. Despite what I like to portray to other people, I actually keep the true inner workings of my mind private. But I can’t sleep, I’ve been crying so much, and I can’t keep the thoughts quiet enough for just a few minutes, so I can fall asleep.

Just like everyone else to this day, I have been defined by a colorful onset of labels, and everyone’s personal definitions of them. I let my parents dictate the way I saw myself for a pretty big chunk of my life, and a part of me has always blamed them for the kind of fuck-up I grew up to be. Well, at least maybe emotionally.

I am turning twenty-three this year, and twenty-two hasn’t been the easiest year in the short amount of time I’ve been around. On the start of 2017, I began to see many many doctors. And by many, I mean, seven (if you count the eye doctor). I saw many different specialists thinking I was going to die soon, or have some rare disease that’s eating away my body, because God knows what else can really go wrong at this point? I was always scared that I was going to die soon. When I was five I used to cry every night because I thought I was going to die at eighteen. Clearly I can’t call myself a psychic.

There’s a reason for all those doctors, but that isn’t the point of this.

I grew up with a disability loosely defined by terms to describe the symptoms I’ve experienced in my daily life. I never knew the proper term or the proper diagnosis, or what really happened to me, because my mom always said it didn’t really matter, because I was okay. I was always left wondering what it was really called and what really happened as I got older, because at some point it would just be easier to state the diagnosis rather than the symptoms.

I never knew what it was called until last week.

I grew up with a weaker left side, a smaller left side, and a stiffer left side. I can’t wiggle my toes no matter how hard I try; my calves are noticeably different sizes, my legs are of slightly different lengths, and my foot is positioned at an upward angle from the side. Visually, I walk slightly angled. I have a gigantic callous near my left pinky toe, and slightly curved toes that I am always a little bit embarrassed of. Oh, and that whole entire leg? It sometimes has uncontrollable muscle spasms, and just jerks out of nowhere. I have no control when this happens.

I can’t move my fingers individually. My left hand is used to press the shift and A button on the keyboard, because it can never align with the ASDF keys. My fingers lock, my forearm is stiff, and I can’t rotate my arm on my own to show you an open palm. My arm shakes uncontrollably when it’s grasping something on its own, and sometimes I just drop things without meaning to. I can’t ball my hand up to a fist, I can’t interlace my fingers with someone else’s, and things fall out of my grasp out of nowhere.

I always grew up with everyone telling me how lucky I am. “It could have been worse,” they would say. I could’ve died.

“You could’ve ended up deaf…” ,

“You could have this, that, something worse.”

“There are children around you with no homes.”

“There are children getting raped and molested every night. You’re fine.”

But I wasn’t fine. I always stopped myself from feeling bad at times that I wanted to feel bad, and cry, and feel frustrated, because I am lucky girl. I am grateful for the opportunities given to me by my loved ones that feeling bad for myself was never really an option. And because I had to force myself to be okay, it forced everyone to be okay with me, too. They treated me like it wasn’t okay to have my bad days. They told me to always have my chin up, because other people have it worse. They told me I didn’t have it that bad.  

But I did.

And I was robbed of the comfort I needed on those days when things just got too hard.

I always felt slightly less than than the normal kids. I was embarrassed and ashamed that I couldn’t do things that normal people can. I can’t ride a bike without training wheels, I can’t play an instrument. I can’t do simple tasks, because I lack the fine motor skills children were supposed to develop as a toddler.

But the worst part was always having to answer the question: “What’s wrong with you?”

Because in truth, I don’t really know what’s wrong with me. I have always had this when I was a child, and my mom said I was normal, so I am, right?

But when the kids at school would always laugh and ask you why you walk funny, or why you wear a leg brace, and why you lack the coordination of a normal seven year old, how do you properly defend yourself?

When they ask you what’s up with your claw-like fingers, what do you really say?

How do I tell the world that I am as capable as the rest of them, and my shortcomings are the part of me that makes me human? Why was it always getting pointed out by the people outside my home that I will always be just a little bit less than them?

But…

Why is it in my home life, I was expected to not feel ashamed for having to deal with this throughout my whole life?

Why is it in my home life, I was expected to never let the things people say get to me?

People are cruel, and they will never understand.

I always wondered why I couldn’t come home in a bad mood without getting in trouble with my parents. Why is it that my parents could not understand that I had some unexplainable frustrations and stresses that I had to fight through every single day? And it was so hard to explain, because how do you express yourself eloquently at ten years old? Hell, I can’t even do that all the time at 22 and a half.

How come the elephant in the room was never acknowledged when it was hurting me day after day to stare at myself and know that I will be like this for the rest of my life?

And why did I get blamed, because I hated physical therapy so much? That shit sucked.

Why couldn’t I just cry in my mother’s arms instead of hearing her say “at least you aren’t getting sold into sex slavery” ? or “at least you’re smarter than them.”

Because they don’t know, and they will never understand. They will never understand how it feels to stare at the other side of your body, willing it to move the way you want it to, but seeing that it just can’t?

No one will understand that it feels so uncomfortable when people touch that side of my body, because I am so afraid they will notice the difference and say something a little degrading.

No one will ever understand my fears in the future that one day I will face the rejection of a man, because he can never see past my inabilities.

I fear having to explain one that there are certain things I can’t do, and see the pity and lack of understanding color his gaze as he stares at me with sympathy.

…that part applies to everyone.

I am ashamed at the thought of standing by his right side, and attempting to walk with our fingers interlaced because my left hand will flop so awkwardly it would take more effort to hold hands than to not hold hands at all.

I have learned to accept the fact that I can’t take those romantic walks on the beach because walking on sand is physically grueling on my foot. 

In every step I take, it takes twice as much effort on my part compared to someone “normal.”

I fear that one day I will drop my newborn child, because my arm will stiffen and lose control.  (Oh, but wait, I was never allowed to fear this, because this will be years in the future.)

I fear that I will lose my balance on my wedding day and trip as I walk down the aisle. 

How the fuck do I explain all of this to someone normal? How do you say all of this and still have someone really accept you for you and your brain damaged self?

But most of all, I fear of needing to have this conversation one day.

I fear the questions, and the facial expressions. I fear the explanation.

Because in the back of my mind, I can’t help but wonder: