Posted in Overcoming Adversity, Pondering about PTSD

The IEP Effect

Imagine if you will that you’re the only kid in your class with a disability, and yet somehow, you manage with the aid of whatever accomadations you have. Things are going well, you are learning everything you need to know. “You got this.” you say to yourself.

And then here comes a random lady with a clipboard, who follows you around everywhere for the entire day.

As a little kid, you don’t question it. Until your IEP comes around and mom and dad chew you a new one about something wrong you did or about an accomadation you decided not to use.

And then it dawns on you. That lady is documenting every move you made and adding it to your IEP. The purpose is supposed to help you grow and function, but once you realize what is going on, anyone with a clipboard becomes your enemy. 

You try to deal with said enemy by remembering all the flaws you had the last time and try to work your way through it, even bullshitting around things to make you look good (as a kid, I did that a lot.)

And then the IEP comes out and even more things get thrown on there, even things you always did right come out wrong. The stress eats you alive and that fear of failure lingers to the point where you feel worthless. It’s almost like if you are a straight A student but fail the SATS. You’re smart and do everything right and yet someone or something above you says different 

You would think dealing with this kind of issue would pass as you leave childhood, but in my case, it doesn’t.

In my work, we get observed on how well we do in our sales pitch. Last week went amazing, and yet for some reason, I failed this time despite what I assumed I did correctly. That fear of failure as I watched the gentleman with a clipboard behind me sent those negative vibes I grew acustomed to as a child. I tried to outshine so much, but somewhere along the line, it all faded to black. 

Ever since childhood and more recently since me leaving Disney, I always get that sick sense of being a failure and losing every ounce of self esteem over a freaking clipboard. Hell, even if they had an iPad or whatever I would be scared out of my mind still. The fact that I am physically being graded throws me off so hard, it’s as though I’m back in elementary school again.

I don’t hold any blame on anyone by any means. The man who graded me is an amazing mentor, but I do blame the fact that a system seeking more flaws than successes, IEP, sales reports, or otherwise, has that physical presence that makes you feel pressured to be perfect to a point where you aren’t. Ultimately, I blame my childhood experiences on this fear that somehow manifested itself into the adult world. I am a great seller, but when I know I’m being graded, I shut down somehow. 

Although there is a big difference between the IEP and a Sales Report, the premises of improvement remains the same, right down to the details that can make or break a person. 

Learning experiences in general should be more positive, although flaws and needs of improvement need to be addressed, there has to be another way to do it so those who need help won’t feel the embarassment of dealing with their differences and needs.

The last thing I would want is for any child who needs an IEP to deal with the constant fear of failure that I’m feeling now as an adult.

Curse you, you evil clipboard.

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Posted in Lights, Camera, Universal!, Overcoming Adversity, Pondering about PTSD, The Billy Blogs

Mandy’s Inferno

“Remind me that the most fertile lands were built by the fires of volcanoes.”

-Andrea Gibson

I spent most of my writing and blogging career chronicling the trials and tribulations of me and Bill, star crossed lovers from age, disability, and location standpoints. I told our stories, both good and bad, in hopes that one day, we could of paved the way for other disabled folks to get married and live that fairy tale life. 

But as of last month, I feel like a fraud. 

I had a few really bad months under my belt due to job loss and financial hardship, having my friend RJ help me out in exchange for a place to stay on nights he would work late. Not a choice I wanted to make, but it was that or risk homelessness.

Of course, Bill was never able financially to help me, only to be my cheerleader in my time of great crisis. His disabilities meant he wouldn’t be able to move down to Florida for me, and he encouraged me to move in with him.

As magical as it would of been to be with the one I love, I couldn’t do it. The idea of living off benefits and having the potential of being cared for by staff, although ideal, would of been the death of me. It was a life he knew all too well, and the only life he has known, but for me, it wasn’t enough unless it was a last resort before moving back in with mom and dad. 

I wrote about us constantly, and now without him, I feel lost. For every share of an old story, I feel like a liar. For the presenting I have done and will be doing, I feel like life with him was just a figment of my imagination, a folk tale as big as Paul Bunyan and Babe the Blue Ox.

Without him, life erupted, and everything I thought we had was destroyed.

I often wondered what he must be going through right now, how hurt he must be, or if he even misses me. Or am I just that annoying phone call in the middle of a Titanfall marathon? Who knows?

A friend from my Disney Days now works as a staff person for a house up north not too far from Bill, and she was able to update me on what’s going on.

Apparently to Bill, I “cheated on him with RJ,” a far cry from the truth since RJ knows I’m still head over heels for the guy and wants me to figure things out on my own. 

No matter what I do for Bill, whether it be an email, text, Skype, or voicemail, it just doesn’t seem like enough to convince him to forgive me, or at least give me the closure I need so I can focus on other things. 

It makes me look like the bad guy. It also makes me feel like one too.

As Mardi Gras season comes to a close tomorrow for me, the anxiety of going to a whole new park grows more and more each day. Watching that Volcano manifest from the side of the highway gives me both comfort and sadness, fear that I did this whole thing for my own gain and not his, and joy that I will finally be able to get my life back together again.

Volcano Bay from the highway.

If only Bill could give me that one chance to prove that this was all worth it and forgive me. If only he could be proud of me and not ashamed. If only he knew the amount of courage it takes to keep going amongst all the hardships I outnumbered the last few months. If only he could understand.

But the question remains, does he understand? Is he able to? Or are my pleas for his acceptance just falling into the lava? 

If only I could find that acceptance in myself as this new journey beckons instead of relying on him. I want to be excited for this new opportunity, but I feel already burned out.Not that the job is bad or anything of the sort, but for everything else going on in my life. 

I guess it’s me versus the Volcano. Let the battle for acceptance begin. 

Posted in Overcoming Adversity, Pondering about PTSD, Relationship Ramblings, The Billy Blogs

Finding (Self) Forgiveness 

Usually, we find it difficult to control our mind. It seems as if our mind is like a balloon in the wind – blown here and there by external circumstances.
                    -Kelsang Gyatso

I have been struggling a lot lately with forgiveness, mostly due to losing Bill and trying to patch up whatever friendship we have left. Losing him has been the ultimate nightmare of mine. Like a balloon, I feel free, but yet I feel lost in the wind, wanting so desperately to be tied down.

Forgiveness has been a hard concept for me to grasp.Trust has always been something I have had issues with since I have dealt with some bad people in my life who would take advantage of my kindness, only for me to be tossed to the curb in the end. How can I forgive others if they hurt me? I am the queen of holding grudges, you do me wrong, ain’t no turning back. 

Bill has fallen through the cracks in the situation, which has tested my patience as well as my self worth. In a normal relationship, he would be the last thing on my mind. But we were never classified as normal in any aspect of being together. Disability was never a “get out of jail free” card for him, but what is?

Maybe it is my attitude that caused all this, expecting way more than what he could deliver. Expecting higher standards for myself while forgetting I am allowed to make my choices and not be punished for it. Why should I go through a second party for approval? 

Because it’s Bill and I have no freaking clue why.

I want to forgive him for the situation with his little friend as well as my choice to take this new job because me being the egotistical whacko I am, I never thought once about his feelings in all this.

But are his feelings worth changing my whole life around? Where do I draw the line in all this?

What if the person I need to forgive is myself? 

Silly concept, but it’s much needed, given the new park is opening soon and my training is mere weeks away. I want to be positively focused on something that could make my life better. I made the choices I did to propel myself forward. I shouldn’t feel guilty for making that decision, even if I broke his heart. 

The guilt has resulted in a few bad nights of sleep, weird dreams that just don’t make any sense, and a desire to cuss people out just because I can. Never have I felt so irritable in my life. Most of this anger is brought upon myself since it was me who decided to end it on impulse, who had issues with his lady friend, who picked up a job away from him. I’m the one who did all this. Me.

I want to forgive myself for the choices I made, looking at the bigger picture has shown me the way to a better future for myself. I hope in due time, he will be proud of me for doing this and will forgive me. Knowing Bill, he can be really stubborn. Like a brick wall, he’s tough to break. Let’s just say it’s going to be a while, if anything, for him to open up again.

But I can’t wait for that to happen. Time is precious especially in transition like I’m in now. Somehow I need to find that in myself. My fate depends on it.

Things can only go up from here, right?

Posted in Pondering about PTSD, Relationship Ramblings

What If?

A typical night for me the last few weeks involves my brain carrying out every single worst and best case scenario in my head. From losing Bill just recently to losing my job in the summer, it has been a thought dancing through my head much to my dismay. It’s a thought of something along the lines of “Could this have all been prevented?”

My adulthood journey began around Christmas my senior year of high school, when I got the welcome packet to go to Johnson & Wales. I originally decided to choose the newest campus that was being built at the time and set my sights for Charlotte, North Carolina. I wanted to leave what was referred to as “13th grade” and go for the real deal (while a lot of my friends decided on the 13th grade route and went to the local community college.) 

Something told me about a month or two before going to college that Charlotte was not going to be for me. What made me have cold feet was a combination of watching a few of my friends go to the Providence campus, being closer to my family in the event something happened, and an odd dream that somehow was an omen to Bill and my writing career. But that is for another post. 

It makes me wonder what would of happen if Providence was never in the cards for me and I chose to stick to Charlotte instead. I know for a fact I would of never met Bill, nor would I have ever met RJ a few years later, which would of resulted in me not being distracted by random guys, knowing college dudes don’t take to nerdy fat chicks like me, and would lead me to graduating and potentially being something beyond a glorified carney.

Or would it?

Maybe the best case scenario mentioned above could of played out different. I could of flunked out and moved back home, or I could of found an equivalent of Bill somehow and ruin my life the same way this life turned out. 

Which then opens the door to alternative universes.

Would Mandy, or Ydnam from the planet Odnalro be a CEO of a billion dollar company as a result of hard work and not finding a Llib or a JR to distract her? Would she find a successful career man and hatch a bunch of babies instead? Or would she have died as a result of a giant tentacle creature that makes Cithulu look like the Easter Bunny? 

Would the alternative me be a happy person and not the depressed lump I am now? How would said alternative person find that happiness?  Or is this all aternative fact and my brain just pulled a KellyAnne Conway? 

My brain hurts now. 

But honestly, it makes me wonder if the life I lived could of turned out better instead of the shit show it is now. It makes me wonder what went wrong and if there is still a way to fix it and make it all better.I spent my whole life at the bottom, can I at least get a chance to be on top? (That’s what she said.) 

I can only hope one day I find that purpose in life, and look back at all this and say “it was all worth it.”

But for now, my brain, and the million other Mandys in the alternative unknown, race on, trying to find a purpose in the lives they live. 

Except tentacle creature devoured Mandy. May she rest in peace. 

Posted in Pondering about PTSD, The Billy Blogs

Schooled in Trust

After a week of Bill “grounding me” and not talking to me after some misunderstandings on my last piece about us, I actually had a pretty decent talk with him about communication. 

A conversation that actually turned against me, but in a good way. 

Ever since I moved away from Providence and did some city hopping on Pennsylvania, we would randomly drift apart and reconnect. And when we finally got back together in late 2015, I vowed I would never lose him again. 

But to do so required me, by default, walking on eggshells to please everyone. His original staff never liked me or my “bad choices” to treat Bill like a normal adult who wanted a social life, and I assumed in returning, things would be the same as they always were. Heaven forbid I make others angry. Since then, I have been afraid to reach out, even though I know the people he has now are awesome individuals who put their heart and soul into everything they do.

As I decided to bite the bullet and reach out to his staff for help, I finally got a phone call, his tone very mature and caring, mine about to chew him a new one like any other worried person would be if their loved one dropped off the face of the earth.

As we were talking things out, I told him that he needed to work on communicating better, but what surprised me was his response.

“Haven’t you stopped to think that maybe it’s your disability keeping you from communicating too?”

Now, keep in mind, when someone mentions my disability, I automatically go to my physical condition. Never do I even think about my mental illness.

I kept listening to him as he explained further.

Your brain shuts down and you get all panicky sometimes, and you sometimes forget the staff aren’t the same as the ones I had before. I get why you are scared, but you don’t need to be.” 

I had a lot of things happen in my life that make me not trust people. The situations I had in the past with former staff was one of them.

All this time, I was in “conspiracy theory mode” thinking the worst, when I should of been thinking about all a staff person in his house does on a daily basis. From medical and personal care, his meals, doctors appointments, the bowling league, his work, and so much more, not to mention welcoming me as a guest and treating me with the same love and respect they give their clients everyday. These people do so much, and here me and my “panicky brain” made them out to be villians.

As I wrapped up my phone call, his staff sent me a text that pretty much summed it all up, in addition to offering help and advice if Bill asks for it in the morning.

…The past is the past, no one can change that. Everyone learns and becomes the people they are today based on what they have learned from their past…

Maybe I am the one who needs to learn to communicate better, to trust more, and forgive and forget. Maybe focusing on the negatives and blaming him.and others on conspiracy alone could very well have killed an amazing relationship.

Thanks Bill for putting things into perspective, and thanks to Bill’s amazing staff who deserve way more credit than I have given them. 

Guess I got a few things to learn myself.

“Oh no, he didn’t!” Well, apparently he did.
Posted in Pondering about PTSD

When Your Bed Is The Only Safe Place During Depression 

Two months have gone by as I enter yet another week waiting for job interviews and call backs for job offers to come in. Which leaves me in the house all day, and most recently, bedridden.

The last few weeks of job rejection notices and bills piling up have led to me refusing to leave the confines of my bed, spending the days asleep and my nights binge watching random YouTube videos and playing The Sims on my phone. 

Sounds fun, right?

My friend moved in with me for a few weeks while he is working a local Halloween haunt at a  theme park a few blocks down the road. He offered to help me with bills and food as rent until things get straightened out. Although I am thankful for him here, it makes me feel even more useless since I can’t “adult” like I used to.It’s as if I slipped into the deep dark almost child like state from the world of happiness and success. 

Each day is a struggle just to get up for a few minutes and do a chore or two, the simplest successes are things normal minded people take for granted. The thought of going out scares me for reasons unknown. Even therapy has been abandoned in favor of sleep in the comfort of my own apartment.

My bed has become my prison, aside from my bestie who tries to swing by once a week to give me some much needed “rec time” to clear my mind. And the results are often short lived.

It’s hard to explain the feeling depression has when it swallows your mind whole, as if everything shuts down. Your rational mind, your basic daily  goals, even your emotions. I actually find it hard to cry now. It’s weird to say the least. 

But I can’t fathom how something as simple as getting out of bed can turn into a Herculean task. And this is coming from an otherwise able bodied, mostly healthy adult. 

I had a few people joke around at how good I have it since I don’t work right now. They have it all wrong. I miss having a purpose in life, to go out each day and interact with people without fear, to be able to hang out with my friends with my own money paying the bill, to just be happy again. 

I know this pain is temporary, seeing the light at the end of this tunnel is coming up soon with job leads slowly processing, but there goes that brain of mine shutting my thoughts and my body down, bit by bit. 

So when you think being bedridden from mental illness  seems better than real life, think again. I wouldn’t wish this upon my worst enemy. Life is worth living, but not like this. 

At least my bed can’t hurt me like the world can. 

Posted in Albinism, Blindness, and Me, Media Reviews, Nerdy and Nifty, Pondering about PTSD

Project G.e.e.K.e.R, What This Obscure Saturday Morning Cartoon Taught Me About Disability 

A dying tradition known as the Saturday Morning Cartoon became a ritual every weekend of my childhood. Way before my parents had cable and way before the days of Netflix, there were the main three channels beamed over the rabbit ears. I had many favorites as a kid growing up in the late 80’s and all through the 90’s, but one show stuck out that was a must watch along with my giant bowl of Lucky Charms and bean bag chair in toe.

A little obscure show called Project G.e.e.K.e.R. (or Geeker for short.)

Geeker was a show created in the mid 90’s by Doug TenNapel of Earthworm Jim fame and was voiced by an all star cast that included Futurama’s Billy West and Cree Summer, who voiced Susie in the Rugrats among other characters we all grew up with. The show followed the many misadventures of a man made genetic man named Geeker, a thief named Lady MacBeth who had a robotic arm, and their dinosaur friend named Noah as they try to stay away from the evil businessman Mr.Moloch, who wants to use Geeker’s powers to take over the world.

They just don’t make shows like this anymore, huh?

As a kid, I found a great personal connection to this show that up until now, I couldn’t explain. I would bug my parents to try and find toys or things that had Geeker on it but to no avail. I drew my own pictures of Geeker everywhere and even wrote obscure fan fiction, which I’m sure you’ll find a half written one out there somewhere on the internet. 

But as an adult, I think I found out the reason why this show spoke to me.

Like Geeker, I wanted to be normal. For someone born in a sense as a result of genetic accident due to my rare form of Albinism, I sympathized with Geeker. I knew the struggles he had in trying to navigate a cruel world and his strong desires to fit in. One thing he is known to do on the show was to attempt to grow a fourth finger for his hand, which he failed at miserably. As the show went on, Geeker slowly learns it’s OK to accept his flaws and embrace his strength instead.

 You can still be tough despite having a disability. Lady MacBeth, also known to Geeker as Becky, is the main heroine of the series. She’s tough, smart, and sassy…and she just so happens to be an amputee. Rather than feel sorry for her lost arm, she takes it one step further and pimps it out with laser guns and mechanical claws. As a kid, I hated the assistive technology I had to use to make my schoolwork bigger, but after watching Becky use the tools she has, it make me learn that sometimes, adaptive technology can make you cool and almost superhuman like. Although lasers being shot out of my eyes would of come in handy on the bully who stole my lunch money, I made do with Close Circuit TV magnifiers and telescopic lenses. Becky could be badass with her aersonal of technology, so could I. 

I may make mistakes, but that’s OK. Geeker is very accident prone, always finding himself in trouble somehow. He may not be the brightest of the bunch, and things might get tough, but no matter what pickle he finds himself in, he smiles and finds ways around it. This is something that just recently I made a connection to, battling with bad PTSD symptoms and the consequences that have come about. But like Geeker, I refuse to give up or give in to what people think is best for ne. I’m better than that, and I’ll rise up, even if it means taking a step back or asking for help sometimes.

This show was a rare gem in the Saturday Morning lineup that was chock full of action, suspense, and a great non preachy lesson in personal acceptance, lasting only a season due to government regulations to children’s television. Not many people remember this show because it was short lived. But it’s message was clear. Normal is overrated and anything is possible, even if you are a genetic accident in a yellow jumpsuit, or a nerdy chick with a rare condition. 

As an adult, I finally did find something with Geeker on it, a 1996 trade magazine ad.
Spectrum Sunday