Posted in News and Opinions, Out and About in Orlando, Overcoming Adversity

Aftermath

Hurricane Irma had to have been the craziest storm I have ever wittnessed ever since Hurricane Sandy hit almost five years ago. The overall energy and magnitude of the storm was enough to stop a city that revolves around theme parks and attractions for two whole days, often unheard of in recent memory.

So how did I do?

Well after RJ and I ventured into the feeding frenzy that was Walmart and stocked up on mostly dry goods in the event out power would be lost for weeks on end, we braved it out with junk food and scary movies, waiting for the moment when power would go out.

Oddly enough it never did.

Seems like we had it easy, right?

Take a look at this. Yes, that pole/tree/whatever the heck it is has impaled the roof of my building.

Which resulted in some flooding. 

Which resulted in the loss of several blankets, as well as my stove and toaster, which became waterlogged after a kitchen cabinet of all things sprung a leak. 

Compared to most, we made it out easy. But the clean up process has been insane. Workers have been on my roof since about 9pm last night non-stop, drilling and chizzlimg away at the cracks and placing new files. Once the big work ends outside, the inside work begins. From killing off the water damage to replacing my stove, the whole process could take a few weeks.

Despite my constant griping due to lack of sleep or nutritious food, I am thankful to live in an apartment complex that has treated me good thus far.

But I am still longing for a sense of normalcy. 

Hopefully soon.

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Posted in Overcoming Adversity

Aiming a Bit Too High

Lately, I have been thinking a lot about the goals I always wanted to acomplish. As I enter the realm of public speaking and tell random strangers, or anyone willing to listen, about my life as this nerdy legally blind blogger, it gives me a great feeling to know that I can look back and say I made some sort of impact in the world. 

But often, I wish I can do more. 

Although I’m living the crazy dream of living in Florida and planning vacations for the Florida theme parks, I feel like it’s not enough. I don’t see myself as management material given my anxiety, nor do I see myself being a trainer, because I have come to learn that I am a slow ass learner at my new job. Odd, considering I caught on things easily at Disney. Maybe I have gone brain dead since then?

I miss the days where I had some sort of impact, whether it was from working with the special needs kids in the homeroom classes in junior high, or my adult years as a parapro for at risk youth. I felt a sense of honor knowing that for every bad day with a kid brought at least one “ah ha” moment that proved to me I was doing my job right, even though some teachers disagreed with it. I treated my kids with dignity not a diagnosis. Same as I treated my relationship with Bill. I felt I made an impact just by being myself. Just how big of an impact, well, that’s left to be determined. 

I have a million and one ideas of what I want to acomplish. I want to land a TED Talk gig, build an art program for the disabled, start my own self advocacy group, find a way to bring my talents, whatever they may be, to the world. I want to make a difference, but I also need to pay the bills and keep a roof over my head. Damn adulting.

Only question is, where do I begin? They say to spread my wings, but how do you get these bastards to work? 

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.

Posted in Cast Member Chronicles, Lights, Camera, Universal!, Overcoming Adversity

One More Week…

The hardest part of my journey over the last few months has been to learn to cope with the fact that we all need a little help sometimes, and that often when we get in a comfortable position, we tend to take the stuff we love and need for granted.

Losing my job at Disney had to have been one of the worst things that’s ever happened to me. Never in my life would I have imagined the hell that would become of my life for almost a good year now. Living off super tiny paychecks and unemployment, as well as taking in RJ partially on nights he works in exchange for survival cash, was definitely not the life I wanted to live. I’m an independent woman, but I felt like I got tossed back into the darkness. 

Life played out like a nightmare I constantly have. In the nightmare, I am a successful business person or graduating college, only to be pulled aside at random and told that there was an error in my records, forcing me back into highschool and having to do the whole thing over again. Just as I was in my prime, everything I worked for was taken away.

I sit here today glancing over my pay stub for the week, yet another check that doesn’t exceed $100, mostly because I’ve been in training one day a week or so for the past month. 

Normally, I find myself in a deep depression over the fact that I can barely buy food let alone pay my bills. I pray every single day that I never have to deal with this again. I wish with all my might that this will be the last really bad paycheck for a while, and yet my wish never comes true. Although I’ve had some decent paychecks since making the move to the new park and picking up seasonal work, the results are often short lived. 

I look at this last paycheck and smile. 

Because after 8 months of suffering, trying to prove my worth to others, dealing with collection calls, and living off Dollar Store food, it’s all come to an end.

Next week, my park will officially be open. I will finally have regular work again for the first time in almost a year. I can finally gain the independence back that I craved for so long. I found a place where my career can grow, where for once, I truly feel accepted. 

Six months ago when I walked out of Disney for good, I thought my life was over.

Turns out my life is just beginning.

In this rather tough journey, I found out who my true friends are, to appreciate the small things in life, and most importantly, not to take life for granted. I’ve learned to take the struggles head on, knowing as bad as things can get, with a little help from the people you love, and sometimes the ones you least  expect, anything and everything is possible. 

Although I still have one really tough week ahead of me, I know, like everything I lived through, it’s only temporary.

In the meantime, I’ll have one more helping of ramen please.

Posted in News and Opinions, Overcoming Adversity

Shameful? Please

So recently, a video surfaced from a motivational speaker by the name of Joey Papa, whom you can watch here, explaining his way of connecting with “Special Needs” people. In the video, Joey shares a rather unconventional tip for those who can’t seem to find the right way to connect.

In this video, Joey asks his viewers to imagine the “most shameful and embarassing moment of your life” and have it constantly repeated everywhere you go. To him, that’s the way disabled people live their lives. 

Um…what?

Since when did disability turn into a constant show of embarassment and shame? How can a man who claims himsef to be a devoted motivational speaker downplay the lives of so many people who are trying to live their lives like everyone else? Kind of defeats his purpose, right?

There are many different ways to connect with people who have any kind of differences, disability, race, sexualality, or otherwise. Using shame as a way to promote empathy is like comparing a black person to that time you farted in front of your boss, or a person who identifies as transgender to that one time you were embarassed on a date by your parents who happened to be in the same place at the same time. Sounds silly, right? Not to mention stupid. If we don’t use that frame of mind in learning about other’s differences, why must this be a way to teach others about our own? Where exactly is the logic in all this?

The fact that this video exists along with that frame of mind is a common example of why I blog, to educate others about my life experience for those afraid to ask. People who only know about life as an able-bodied person are scared of the unknown and associate our lives with shame and embarrassment. These are the kind of people who make life hell for us. This frame of mind doesn’t create empathy or a sense of bonding, but rather instills the fear of making that connection by associating your most embarrassing moment with another person’s life.

Embarrassing moments only last for a few minutes. My life has been constantly going for about 31 years now. There’s a big difference between the two and those paths should never cross, not even in theory. 

I know at times I tend to have an internal ableist mindset of my own, often setting the bar too low for myself. Although sometimes I feel shame in myself, never would I wish this shame upon anybody else, even if it’s intentions are for the greater good of society.

What the heck is this guy thinking?

To really connect with people with disabilities, one must be open to differences and break that cycle of fear and resentment. A simple hello, a helping hand with consent, and an open mind are all things that can make any connection worthwhile. A disabled person should never be treated like a shameful moment in your life on replay. We are all part of the same human race with the same wants and desires as anybody else. 

Sorry Joey, but I am not your embarrassing moment. I am not here to be shamed by your viewers, and I demand the same respect you would give to anybody that is not “Special Needs.” I feel that your heart was in the right place in attempting to educate others, but you have really missed the target on this one. You want to make the world a better place, but you’re only teaching others to hate by teaching them to shame others that are different from themselves. 

Back to the drawing board for you. Perhaps you might need a Disabilty Consultant to assist you in your speeches. Just saying 😉

Posted in Overcoming Adversity, The Billy Blogs

Dear Billy, (Three Months Post Break Up)

Dear Billy,

I wanted to check in and let you know how things are going lately. I’m sure beyond that tough facade of yours, you’re most likely wondering about what is going on with me. Believe me, I’ve been thinking the same way as you are. 

When I finally got closure from you last month, I was finally able to move forward with my life, although doing so meant burning a lot of the stuff you gave me. Surprisingly I don’t have any regrets, but I sure do miss Sunshine Bear. I guess you could jokingly say I’m horrible bear parent, but I digress. I was angry at the way things worked out with us, and as much as I tried to make things work, I guess it just wasn’t meant to be. Yeah, I spent weeks crying myself to sleep over this to the point where I had nothing to cry about. Although you’re too manly to admit it, I have seen you break down before and I worry about you doing so again. You have always had such a strong will about yourself and I hate to see that will be broken.

Anyway life so far has been hard, but I’m getting back to the way things used to be with my career. Work picked up at the survey place because of pilot season, meaning all the new TV shows are out and ready for previews. There are some pretty awesome shows coming out. I recommend you watch the show “Rise” since it’s very much like “Glee: and it also chronicles the story of a teacher I know for my hometown. The character named Lou is actually based on a real person. Pretty cool, huh?

I have been working on my training as a vacation planner at the new park, that job that basically ruined our relationship and prevented me from moving in with you. Although I lost you, I have finally gained confidence knowing I can return to my roots as a vacation planner and be something with my life again. My bosses are really nice and let me use my magnifier without any hassles. The people I met so far are really nice. Everything about this place has been nothing but wonderful to me. It may have seemed like a gamble, but so far I’m winning. 

You should see this place, Bill. It is as if you stepped into Hawaii. There’s a big giant volcano that’s also an aqua coaster, there are two lazy rivers, about 13 slides, a wave pool, and a water splash area. I know you’re probably thinking that none of these rides would be accessible to you, but a good majority of them are. They have elevators that take you to the top for some of the slides, a lot of the pools are Zero Entry, meaning you could take your wheelchair in for a little bit and dangle your toes, and some of the pools have little chairs that will drop you in so you could transfer in and out of your wheelchair easily. Even the kids play area is handicapped accessible. There are basically no limits to what you can do here. My God, you would love this place! Hopefully one day, you’ll be able to come and visit me.

Everything else in my life is going okay. Me and RJ are still good friends and are kind of debating whether or not we want to go back with each other, but for the foreseeable future, it doesn’t look like it’s happening. But I’m far from crushed about it. We are perfectly good as friends.

Working both jobs has been keeping me busy and my mind occupied. Every once in awhile when something new happens, I so want to call you and tell you about my day, but since you’ve basically written me out of your life, I know the odds of you answering are slim. 

I have been on a lot of adventures lately aside from work. I got to shoot real life zombies at RJ’s work, explore an insanely huge McDonald’s, help in the production of a Jimmy Fallon skit, attend both a Blake Shelton and a Flo Rida concert in the same week, go to Spooky Empire, and babysit Amanda’s cat. I have so many stories to tell, and not enough time to jot them down. 

Although I try not to, I still think about you a lot. I wonder how you’re doing through all this, how your bowling league is going, all the cool trips you made with Shayna, even what’s going on with your job. So many questions, I’m pretty sure I won’t get the answers to. But nevertheless I hope everything goes well with you and you are living a wonderful life that’s far from boring.

Just be sure to know that even though things went bad between us, I still consider you as a mentor and great friend of mine. That love I had for you will never die, even though now it seems like it. You have been a major part in my life and I will forever be grateful for the time we were able to spend with each other the last year. I’m hoping sometime down the line we will cross paths again, but only when you’re ready. I know I can’t make you change your mind,  that is all on you. But rest assured when time comes and you are ready to talk to me, I will be here for you.

Never stop being the amazing fun person you are. Keep being the amazing self-advocate who never stops fighting for their dreams. Whatever life takes you, know that you can handle anything that comes your way. I want you to be happy, and never to be sad. 

I’m always a phone call away if you need me. 

Love you still, always will.

Mandy

PS- Enjoy this picture of me hanging out with a Zombie at Spooky Empire last weekend. Don’t worry, he isn’t real. 

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.