YOU JUST DON’T UNDERSTAND!

One of the most difficult obstacles I have faced since I was diagnosed with epilepsy back in 1992 is surprisingly not the side effects that I deal with…not the looming threat of seizures that I worry about…and not the judgmental people that I have come across…but rather my own self. Weird huh?

I suppose it’s hard to describe how your own self can act as an obstacle to yourself but, believe it or not, it is very possible. When I was first diagnosed, to say that I was upset…well that doesn’t even begin to explain it all. A surge of emotions that I never experienced before was rushing through my body…and I hated it! Everyone in my life…family and friends…they were doing the best they could to comfort me…but all I could say, and think, was: “YOU JUST DON’T UNDERSTAND!”

The reality may have been that they didn’t, but they were trying to understand, and that’s all that matters. But life was different back then. And to put things into perspective, you must compare what it is like to be diagnosed with a disability now versus over 20 years ago. In 1992 there was no Facebook, no Twitter, and the internet was so new that no one really used it like they do today. The ADA laws were still in their infancy, and there were no health insurance protection laws for people with pre-diagnosed medical conditions.

There weren’t any support groups where I lived and my first neurologist…her suggestion for my parents? Well…instead of telling all of us about the New England Epilepsy Foundation…hmm…she told them to send me to a shrink…gotta love some doctors. I can remember going to my school library and taking out any and every book about epilepsy and the brain that I could get my hands on just so I could simply understand a little about what was happening to my body. The more I learned, the more I wanted to tell everyone that they didn’t understand!

The more I focused on people not understanding me, the more I pulled away from everyone. I felt alone…scared…angry…and as a result, I hurt people because I was having a hard time loving myself…let alone anyone else. I just kept pushing people away until they stopped coming around.

You’re probably going to want to ask: “Why the hell would I do that?” Well…obviously I didn’t realize at the time that I was doing that. I guess I was just so wrapped up in my own head space that I didn’t realize I was hurting those around me.

For example, there was this boy…he was my first boyfriend…he was such a sweet guy…so cute…and a good kisser too (ha). We met in junior high (before I was diagnosed) and were friends all throughout my high school years. I remember every time he told me that he loved me, I broke up with him. Ugh….I swear I’m not an awful person…I’m just really bad with emotions and relationships…if only I was as good at talking to people as I am at writing…but that’s beside the point…

So back to this boy…we would always get back together…but then I changed…epilepsy happened…it was like I felt I needed to disconnect my emotions from myself…from everyone…just to function…just to survive…

I still remember the last time I broke his heart…he brought me roses for Valentine’s Day and left them at my locker. I barely acknowledged him and what he did for me. I was going through so much at the time and I didn’t know how to tell him, let alone anyone else, how I felt…I guess maybe I pushed him away on purpose.

The reason I’m telling you all of this is in hopes that you learn from my mistakes. I still have days when I want to be anti-social…but now those days are few and far between. And I still can’t always articulate whatever the heck is going on inside of my head at any given moment (ha)…but now I try.

I genuinely feel bad for anyone I hurt and pushed away while I was going through everything when I was younger…the amazing thing about this story is that all of those people found their way back to me. All of those friends I ran away from…all of those guys that I hurt…all of the family I ignored…they are still there for me now. Ironically, the one thing I didn’t have as a tool for expression and support assisted me in finding many of these people years later after I graduated high school (Facebook).

So chances are, if you’re going through anything serious right now, you’ll say exactly what I did: “YOU JUST DON’T UNDERSTAND!” But I’ve learned it doesn’t matter if they understand…what matters is if they WANT to understand…what matters is if they love you…are there for you…what matters is if they ARE understanding…this IS WHAT MATTERS!

Real Beauty

When I started this blog

I knew there was a chance it would turn people away…

I knew there was chance it would frighten people…

On one hand…

I am openly optimistic about pretty much everything…

On the other hand…

I’m brutally honest…

About all of the raw emotions that I have ever felt…

About all of the tough times I have ever gone through…

And I am NOT sorry for expressing those feelings!

And you should NEVER be sorry for expressing your feelings either!

I don’t care if my post makes people feel uncomfortable…

I don’t care if people judge what I have to say…

I don’t even care if they laugh…

However, I do care if my posts help people.

Even just one person…

To realize that they can love themselves for who they are…

No matter who they are.

May my posts teach you that writing about your life

Is truly the most cathartic experience you could ever have…

May you see that being vulnerable

And strong

At the same time

Is the most beautiful thing in the world.

My hope is that you see that “different”

IS real beauty!

All ONE BILLION of Us!

Roughly one billion people in the world struggle with some type of disability. This number makes up a fifth of the world’s population, and every year this number grows. There are all different reasons why and how a person becomes disabled. I could probably write a whole book just about that one topic, but, even though I feel the beginning of a story is always important, in my eyes, it’s our journeys…our struggles…our successes…and even our failures that mean so much more. Think about it for one minute…there are ONE BILLION people in this world that wake up every day, and before they even get out of bed, there are already insurmountable obstacles facing them. They must fight their own bodies and minds just to complete the day…and ONE BILLION people continue to do that EVERY DAY! THAT is AMAZING!

It’s not easy being disabled…no matter what your disability is. I have days when I feel so defeated that, honestly, I simply don’t want to get out of bed, and I just shut out the whole world. Sometimes I even hide inside my own thoughts…it’s easier that way. But I know deep down inside that I am stronger than I realize…just like the other 999,999,999 disabled people that live on this earth. I may not be able to change the beginning of my story, but I know I can change my journey…at any time! Every day I remind myself of that. Every day when I wake up knowing I’m already facing struggles before my feet hit the floor…I remind myself that I can have anything I want and need no matter the challenge…no matter how much my body hurts…no matter how much my brain says to give up…no matter what other people say or do…I am entitled to succeed and to be happy just as much as a “normal” people…and I will be successful and happy…and you can too. All we need to do is try…all we need to do is not give up…I don’t know about you…but I refuse to give up…I refuse to stay defeated…I refuse to listen to those who doubt me…to those who have rejected me…our lives are not determined by our disabilities…but rather by our reactions and actions to the obstacles that we face.

So how do I know all ONE BILLION of us can and will be successful? I just do. Call it faith…call it intuition…or maybe call it a hypothesis based upon my own life with me as the mouse in the maze we call a life. When I tell you that I have struggled THAT it is an understatement!

I got laid off…twice in one year. I had to start my life over in my late 30s. Scariest thing ever by the way. I have done the worst jobs for the worst money you can possibly imagine and felt like I was never going to become anything at all. I have had people say the most judgmental and hateful things right to my face about my disability. I have even had people accuse me of lying about my disability all because they never saw me have a seizure. There are still times when I feel like my life is, well to be blunt, a failure. I’m definitely not where I want to be career wise, money wise, relationship wise….ANYTHING wise….but…I don’t feel defeated. Weird huh?

You probably gonna wanna ask why? Well, I don’t feel defeated because I know what I want and I now know that it takes time to get what you want and to get where you want to be…especially when you have a disability. I will admit…I’m not the most patient person at times…especially when it comes to my life. I sometimes have a hard time focusing on and finishing tasks…it’s because I get bored and I see that I’m not getting the results that I want…the side effects of one of my medications definitely doesn’t help with my concentration which makes this a constant and daily battle.

It took me a long time to realize and accept this part of me, to accept all of me, my faults, my needs, my desires, my likes, dislikes…all of that crazy madness…I suppose that’s why now things are a little easier for me. Right now, I have a good job…it’s not my dream job or the perfect job, but it’s a good job, with a good company and I work with great people that understand and accept me. This alone helps me to get past those bad days. Finding an employer that is understanding of your disability is so important. All ONE BILLION of us deserve that! Don’t accept anything less! For a long time, I was ashamed and afraid to tell people I had epilepsy. I was afraid to tell them about what I was dealing with. I was afraid of being judged…about being looked at differently…I hated being different! It’s not easy to be different, I know…but being silent doesn’t make it better…I’ve been that person being interviewed…seeing the eyes of the person who’s interviewing me look down and up, and I realize that they are no longer listening to what I have to say but rather paying attention to my tremors…I realize they are trying to decide if they want to hire a disabled person like me…those moments suck! People suck! But not everyone is like that…not all companies are like that…don’t give up…

Like I said…I just know…I WILL be successful…All ONE BILLION of us will be successful…all we have to do is get out of bed and refuse to give up!

Press Zero First

Don’t tell me I don’t make sense

When I already know I’m a mess…

Put down the Starbucks

And drop the Apple for just a min…

I know my no-name t-shirt bothers you

But let’s just actually talk for once

Put a quarter in the slot

To press send…

Ohh no…

You forgot

What twenty cents is worth

Hang up

Please dial and try again later

No wait…

Press zero first

You need an operator

I don’t think we will ever speak

It’s sad…

Really

No talk

No text

No skype

What’s that…

Do you know me…

Do I know you…

Nothing….

Nothing…

Absolutely nothing but…

Dial tone……..

One of the biggest obstacles I have faced as an epileptic is surprisingly not controlling my seizures, but rather finding the best way to communicate to those in my life about who I am and what I deal with on a daily basis. For a long time, I completely avoided the whole “communication” thing. To be honest, I was never good at that even before I was diagnosed. I would always over-explain something and go on this wild tangent (a bad habit that I still have to this very day), or I would under-explain (is that even a word ha) and say the bare minimum in an effort to avoid uncomfortable topics.

The irony is when I was first diagnosed with epilepsy, like many individuals, all I wanted to do was talk about my disability. I wanted to ask questions, like if anyone in my family had it or how I got it. I also wanted to talk about what was going on inside my body. I wanted to find a way to make sense of it all, even though I knew deep down inside there was no rhyme or reason for what was happening to me. I guess I just had that instinctive need to work through all of these uncomfortable emotions and thoughts that I had never had before. I was also dealing with all sorts of insane side effects from medications that both me and my parents had no previous knowledge of. Side effects that would linger in my body for decades.

I felt like I was hit by a tornado, and I was Dorothy, whirling around and around and around. I kept trying to talk to everyone in my life about what was going on and where I was, but, like Dorothy, I received the same detached reactions…”I was fine.” “There’s no need to worry.” “Everything was going to be okay.”

But I knew there was a need to worry. At the very least, I had to understand what was epilepsy and what was going on inside of me to make me a different person. But that journey to understanding came at a cost. Some people in my life didn’t understand the “new” me anymore. They didn’t understand why I would do certain things, say weird stuff, or why I didn’t go places. It took me a long time to understand that it was okay if they didn’t understand this “new” me…my life, my journey is for me, just like their life and their journey is for them. We aren’t meant to understand each other’s lives or necessarily accept the paths we take. What we ARE meant to do is to be the listeners of each others journeys. When we stop and listen is when we learn. It look me a long time to learn that lesson. I was so worried about my own journey, I never stopped to realize that others have their own battles at well. Take a moment to press zero…and listen to someone else’s journey…who knows what you might hear..

Pretty Little Girl’s Don’t Cry

Smile pretty girl

You have such a lovely smile

Little girl

Don’t worry so much pretty girl

There are more important things

For us to talk about little girl

Pretty girls don’t talk like that

Little girl

Behave like a pretty girl should

Men only marry pretty little girls

That smile that is

Stop frowning!

Stop crying!

Stop cursing!

Stop slouching!

Behave like a pretty little girl should!

Smile pretty girl

No one talks about their feelings

Don’t you know it’s unlady-like

You have such a lovely smile

Little girl

Why are you crying?

Pretty little girls don’t cry

FOR CHRIST’S SAKE GIRL

WHY ARE YOU BLEEDING?

Little girl?

LITTLE GIRL?

Are you okay?

Pretty girl?…

I pretended to be “normal.”

So many things have changed since I was first diagnosed with epilepsy back in 1992, and I’m not just talking about my life. Think about all that has changed in the world in the past 26 years. Now imagine living with a disability before, during, and after those events. For example, the enactment of the Americans with Disabilities Act (ADA) of 2008 helped many individuals like myself. I can remember applying for one specific job in the late 90’s, and the manager told me he couldn’t hire me because of my disability. It was one of the first of many times I would come across potential employers that looked at me differently just because I had epilepsy. I was so naïve that I thought I had to tell that manager about my disability even though I was only applying to be a cashier. I can still remember going home and crying to my mom about what happened. She comforted me as best she could and firmly told me to not disclose that information next time.

She was right…why should I? Was it really an employer’s right to know my medical information? To be perfectly honest, to this very day, I even hesitate to disclose my medical condition on any application. On one hand, I fear the employer might not hire me because I stated that I’m “disabled,” and then on the other hand I worry if I do get the job I’ll be underpaid. Statistically, disabled Americans are more likely to be underpaid and underemployed in comparison to those without a disability even if that disabled individual has acquired the same education with the same skills or even more skills, (according to the United States Department of Labor). I must be blunt…that experience messed me up for quite a while. I now knew that being “different” was unacceptable. So for the next 10 years or so I pretended to be “normal.” It was what everyone wanted, wasn’t it? My family, my friends, and my coworkers, they all didn’t want to be around someone with a scary illness. I could see the fear in their eyes. They didn’t even have to say a word. And I can’t tell you how many times I heard from my Mom and Dad “how much I changed,” and they definitely weren’t giving me a compliment. Before long, I didn’t even tell people that I met and became close friends with that I had epilepsy.   They didn’t even know the REAL me…until one day, it all came crashing down and it was like I was back in 1992 again…just like the day when I had my very first grand mal seizure.

When everything changed…

One word I have come to despise since I was diagnosed with epilepsy is the word “disabled.” Seriously…who the fuck thought up this word? Let’s just break down this word in its simplest of meanings…not abled. And now let’s attach that term to anyone with a medical condition or disease. Am I the only one who sees a problem with this? Like many “abled” and “normal” people, I have certain restrictions that I need to live by; for example, people who have high blood pressure often need to monitor their activity, and even individuals that are on a diet find themselves unable to eat what they want. Okay, so maybe I’m over-reaching with the comparison of an epileptic and an overweight person, but I do have a point. Calling an overweight person fat isn’t nice so why do we still use the term “disabled?” And don’t tell me it’s a legal term, because that’s bull shit! Anyways, I’m getting off on a tangent. Let’s start from the beginning shall we…when my life completely changed.

My freshman year in high school was actually pretty awesome (minus the whole “hey now you’re an epileptic” thing that happened). My mom and dad finally let me wear contacts, so I no longer felt like little miss four eyes (and before you ask, yes, I had been called that many a times by mean little elementary boys who don’t deserve even a sentence in this book and blog). Boys were really starting to notice me, and I LOVED it! My dad on the other hand hated it. I didn’t care though. It just felt so good to finally be thought of as one of the pretty girls, rather than “a friend.” And despite the fact that I was a band geek who played the flute (and no there was no band camp for me), I was invited to a senior party and both the junior and senior proms! I just couldn’t believe it! I wasn’t really popular or anything, and it wasn’t like I was putting out, so it was kind of cool to feel a little special. And even better, I had the best group of friends! They were all a little geeky and eccentric like me so we all got along great! And I must’ve belonged to every club you could possibly imagine during my freshman year.

Things changed though the end of my freshman year…the spring of 1992. One random night, I went to bed “normal” and woke up “different.” It would take about a week before I knew exactly how “different” I had become. I remember waking up in the middle of the night to go to the bathroom. Afterwards, I was thirsty, and all I wanted was a glass of soda. Weird, I know. When I went to the fridge, there was this humungous bottle of ginger ale that my dad bought but it hadn’t been opened yet. I walked across the kitchen to get a glass and to open the bottle. As I tried to open the bottle, I pulled it close to my chest but when I went to twist the cap off, my hand jerked uncontrollably, and before I knew it, the soda bottle was on the floor exploding everywhere! The last thought I remember thinking to myself as I bent over was: “Geez! What the fuck!” But then everything went black. I woke up hours later in Brockton Hospital with tubes up my nose and one hell of a migraine. My mom was sitting next to me, while my dad had to go to work. I was so groggy and felt like someone had drugged the hell out of me, only after banging my head against the wall a few hundred times. As I started to come to, I could feel the burning of the oxygen as it ran through the tubes and into my nose. I kept ripping the tubes out, and I don’t know if it was my mom or the nurse, but they kept trying to put the tubes back up my nose. I wound up going home later on that day. My parents started talking to me about what happened and what the doctors said at the hospital, and all I heard in my head was Charlie Brown’s teacher’s voice….waaawaawaa. Was this really happening to me?

There was a time…

It’s weird for me to think I have a story to tell. Honestly, for so long I’ve just been living my life as if I was normal, when I know I’m not. I wake up every day with a body that hates me. It curses my every move, my every waking moment. I live to serve a vessel that I have come to despise. Yet ironically, I have become dependent upon the very nature of all that I am. There are days in which I feel like no one will ever understand me, despite the fact that I am surrounded by awesome friends and family. There are days when all I want to do is cry and hide from the world. But I do just the opposite. Even as glaring eyes watch my every uncontrollable and shaky move, I smile and keep my head up, and pretend I’m fine. Yet the truth is I’m NOT fine. As I type these very words, I can’t help but shed a tear. And I know what you’re thinking right now…damn, this girl is depressed! But I’m not. It took me a long time to realize that it’s not a bad thing to say you’re sad. And newsflash to anyone that is already getting semi-judgmental…having no control over your brainwaves is slightly depressing so if someone wants to be upset now and again…I think they’re entitled.

When you have lived with epilepsy for as long as I have, you become two people, and I don’t mean that in the “Sybil” kind of way. On one hand, I’m kind of a real-life Wonder Woman. My body and mind defy all odds and medical reasoning. There are moments that I am just astounded at the things I can do I do with a time bomb inside my head. For the most part, I don’t think about the reality of my situation. Perhaps this is why I can overcome all that I stands before me…but it hasn’t always been like that. There have been many moments when I’ve felt more like a crippled Superman bound by a rope made of Kryptonite as I’ve fallen down helpless by circumstances that I feel I am to blame for. But we’ll get to those stories later. You see there are days…oh so many more days…that I am brought back to reality and reminded of my own mortality. There are days in which I feel so weak that I dare whisper the words of how I feel even to myself. I’m even afraid to cry because I know that means I would be admitting defeat.

I want you to know my life wasn’t always this way. I wasn’t always “different.” There was a time when I was truly “normal.” It’s hard for me to think about those days because, in some ways, I feel like the “normal” me died when the “different” me was born. I mourned over my death twenty some odd years ago. That was one of the hardest times in my life. It’s hard for me to talk about it because, in some ways, I’ve honestly tried my best not to remember my past life. It was so long ago, and so many things have changed…I’ve changed. But I do miss what I remember of my old life. I was so happily innocent. I really didn’t have a care in the world. I never worried about going to a doctor (except for the occasional bumps and bruises), and I was never restricted to any type of routine. The world really was my oyster (as the saying goes).

The irony of it all is I probably wouldn’t change my life even if I had the chance to. You see, I was a spoiled brat when I was younger. I didn’t appreciate life or people or much of anything. The journey of my life has not only humbled me but blessed me in ways that I’m not sure I would have had as a “normal” person. The pain and struggling I have and continue to experience doesn’t make me bitter. It makes me kinder. I am about to tell you ALL of my story. Things that I have never shared with anyone. I don’t do this to warrant pity or sympathy. I do this because I am hoping that maybe I can help at least one person. There was a time in my life, long ago, when I wished someone would have told me that everything I was feeling was okay. There was a time when I was afraid to tell people I had epilepsy. I would pretend I didn’t have a disability and ignore that disclosure section of a job application. There was a time when all I wanted to be was “normal” again. Oh, there was a time…

I wish I was a butterfly with legs

The world stands still

But still I tremble

I try to hide as the crowd passes by

Hoping no one looks

Hoping no one stares

I look in wonder as each person moves

I see them sit

I see them walk

Like butterflies with legs

Oh how I wish I was a butterfly with legs

But I’m not

I just tremble like a lost and fallen leaf in the fall

Moving as the wind takes me

Hoping no one sees

Hoping no one notices

But today

Someone did look

Someone did stare

I was so scared

What were they thinking?

I’m no butterfly with legs

I’m just a lost and fallen leaf

But today

Someone did see me

Someone did notice me

And…

That someone smiled at me.

Blog at WordPress.com.

Up ↑