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!

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