Tuesday, June 10, 2014

Who Thought This Was A Good Idea?? -Thoughts On Love, Stupidity, And Getting Shot

When I first saw this image, the only thing I could think was that it had to be fake. There had to be some kind of safety in place, photoshop, something, anything. It wasn't. It isn't. It's real.

The couple you seen in this photograph are Marina Abramovic, and Ulay, performance artists that came together in the 1970s and '80s to create extreme pieces as an experimentation and demonstration in relationships. This one, entitled "Rest Energy," is exactly as insane as it looks. The performance starts with the bow in its rest position, the pair already standing in place. They then proceed to lean backwards in unison with equal amounts of weight from each of them in order to draw the bow. How they were able to get out of this position after holding it for 4 minutes and 10 seconds without releasing the arrow, I do not know.

Although the greatest burden rests on Ulay, who is holding the arrow in place, pointed straight at Marina's heart through the entirety of the 4 minute and 10 second performance, it is Marina that faces the greatest challenge. She has no control of the situation other than to do her best to hold the bow steady to keep from making Ulay's job more difficult. Beyond that, she has placed herself in a position of total trust and complete helplessness in the hands of Ulay.

There was only one thing I could think of when I first saw this image: Who thought this was a good idea!? This. Is. STUPID!

And then I read the cation that had been written below it:
"It’s like being in love: giving somebody the power to hurt you and trusting (or hoping) they won’t."

And how true that statement is.

How often have we placed ourselves in that position that mirrors Marina's- with no control over the situation other than to do our best to hold steady the very weapon that is pointed at our hearts in a desperate attempt to make the life of the other person easier- in a position of total trust and complete helplessness in their hands, with our very hearts on the line?

But love is not something we often call stupid.

Love often creates such beauty, just like what is seen in this photograph, and such joy, like what the performers were feeling after the show was over. At times, the other person may not even know they are holding the arrow at all, and yet we still put ourselves in danger to hold the bow for them. Other times, they may not even know that they released the arrow until it's too late, and they must then live in a state of eternal regret and remorse, wishing they could mend the hole they created in your heart, but knowing that even if they could, the scar and the memory would always remain.

Why do we put ourselves in Marina's position to begin with? Who thought this was a good idea? What causes us to love another person so much that we are willing to put our very hearts and lives on the line simply to help make their lives a little bit easier?

I don't have an answer to that either.

So is love stupid?

But maybe, just maybe, it's worth the risk as well.

Saturday, June 7, 2014

Inspiring What?

Every once in a while I have someone tell me that they have read some of the content on my facebook, or they heard about me from one of my family members, or after they have been talking to me for a while, that they find me so inspiring. Every time someone tells me this, I bust up laughing.

Inspiring what, exactly? Most days I struggle to do much more than sleep. What am I inspiring them to do? Bring nap time into the workplace? Sleep at unconventional hours? Give their dogs weird nicknames? Have really bad fangirl moments? Sit in a corner and cry in terror for no reason at all? How on earth could anyone look at me and think, "inspiration?" What exactly am I causing to happen here? Is there going to be a cluster of people that decided to discover a way to create the scientific means to
control things telepathically in their sleep, take over the world, and call me an inspiration? Ok, maybe that's a little far fetched, but what exactly is going on here? How am I an inspiration?

When I think of someone who is inspiring, I think of people who have accomplished great things through and in spite of some form of adversity- people who push through and don't let anything hold them back. When someone says, "Oprah," the image that pops into my head is of her standing on a stage with a huge grin on her face, telling someone she's giving them a car, not of the girl whose infant son died when she was 14. The name "Albert Einstein" brings to mind a man with crazy white hair standing in front of a chalk board, upon which is written, "E=MC²," not of the 16-year-old boy who failed his entrance exams. "Rosa Parks" conjures up an image of a woman sitting in bold
defiance on a bus seat, not sitting overnight in a jail cell. And when I think "Amy Purdy," I think of a woman dancing her heart out, not letting anyone know she had legs for nearly 20 years. I don't think of the 19-year-old girl who lay in a hospital bed thinking, "This is what it feels like to die."

No, I really don't understand how anyone can label me an inspiration. I haven't accomplished some world changing feat. I'm not operating in the public eye under constant scrutiny. I live with my grandparents. I don't have a "real" job. I had to drop out of college, even though I had good grades, because my bad health made it next to impossible for me to attend classes. I've spent the last year struggling to do much more than get out of bed every morning. I forget to eat. Most of my days are spent in my pajamas, or if I really feel like putting myself together, jeans and a t-shirt. I've gone from having my makeup application down to an exact science that can be completed in 15 minutes or less to, "How do I put this on again? Oh well. I'll just do without." I force myself to continue putting one foot in front of the other every day simply because I get so bored!

I have spent the last year out of school and out of work and out of my mind in complete and total boredom. When the used bookstore put a Spanish grammar review textbook/workbook on their shelves, they thought they would never be able to get rid of it. I'm the nerd that bought that book. That's how much I miss school and love learning. I'm forced to laugh at all the bizarre things that happen to me as a result of my illness as a way to keep from crying. I spent the last year sitting around feeling sorry for myself and wishing things would change. In my mind, I knew nothing would change until I got up and did something about it, but it took a bit longer to know that in my heart.

Sure, I have days that I crumble under the weight of exhaustion. Yes, I have moments that I weep out of a desire for things to be different. But I always force myself to get back up and keep moving forward, eventually. Sometimes whatever I'm trying to do has to wait until tomorrow or the next day, but eventually I get it done. Maybe avoiding boredom is a bad motivator, but as long as it convinces me to get up off my bum and do something, that's not so bad, right?

So maybe all I'm doing is inspiring people to get off their bums and do SOMETHING- anything. And if I can be that extra little bit of motivation to convince them to air out the sofa, maybe that's not such a bad thing, even if they are trying to control things with their minds.

Sunday, May 25, 2014

Service Dogs and Boobs- A Complete Guide.

I will be the first to admit that I've had some truly awkward moments with my service dog- having her crawl into the stall next to mine in a public bathroom; cleaning mounds of dog puke out of the back seat of my mother's car less than a week after I got her; trying to shuffle people around me on the sidewalk because she decided to poop in the center of the walkway and then having to explain why I was late for class; trying to convince someone that it really was the dog who farted, in a public space of course, and yes I know it smells terrible; having people give me strange looks in a movie theater when they hear a loud and unexpected voice whisper, "Get back here! You do not need to go on a popcorn odyssey!" As awkward as these moments may be for me, none of them are as awkward as encountering someone who doesn't know how to behave around a service dog.

Now, before I get into the do's and don'ts of service dog etiquette, there is a word that I am going to repeat over and over again until it is no longer uncomfortable for all of you lovely people out there to read. Is everyone ready? Here we go:
I hope that helped.
Now that we have that out of the way, hopefully we can continue without this being too uncomfortable for anyone.

There are certain rules that one should adhere to when around a service dog that is not their own so that the dog can work the most efficiently, but instead of asking everyone out there to memorize a list of rules (which I know no one will do), I'm going to give you a simple rule-of-thumb that will make service dog etiquette easier than you could have ever thought possible. This will change your perspective on life. Are you ready?

Treat the service dog like a boob.

I'm serious. That's it. That's all you have to remember.

There are certain things that no person should or would (hopefully) ever do in regards to boobs. The following is a list of things that if you ever said or did any of them, you would earn yourself a well deserved slap.


"Look at that girl's boobs! *points* Hey, everybody! That girl has boobs!"

"Am I allowed to sit next to you? I don't want your boobs to bite me or anything. Maybe I should just sit on the other side of the room..."

"Can I touch your boobies!?"

"Why do you have to have those boobs with you? I'm just not so sure they're necessary."

"BOOBIES!! *grabs without permission*"

"Are your boobs aggressive? Do they bite?"

"I just don't know how I feel about letting someone with boobs in here. It's just unsanitary, you know? You understand, right?"

"Hi, little boobies! I've got a treat for you! You want a treat, little boobies?"

"Are you sure your boobs are real? You aren't blind or in a wheelchair. How do I know you don't have fake boobs? Do you have paperwork proving that they're real boobs?"

"Are your boobs going to behave themselves? I don't want any disruptions."

"Look, honey! That girl has boobies! Go pet her boobies! What? What do you mean my kid can't pet your boobs? That's so rude of you!"

"Are your boobs going to be able to handle this situation? They aren't going to get scared and freak out, are they?"

"How dare you have boobs when there's nothing wrong with you! There is a disabled veteran out there that served our country that actually deserves to have those boobs, and needs those boobs, and you took those boobs away from them! You should be ashamed of yourself!"

"I know it's none of my business, but why do you have boobs?"

"Why is that girl allowed to have boobs in here! I want boobs too!"

As humorous as all of this is, it is actually a genuine problem for people like me who have a legitimate service dog for an invisible illness. Replace the words "boobs" and "boobies" with "dog," "service dog," and "puppy," and you will have a list of actual comments people have made to me- most of them by complete strangers who have never seen me before in their lives, and who began their conversation with me this way.

Please don't be the ignorant individual who makes comments like these, about boobs or service dogs. People who have a disability already feel like they stick out like a sore thumb. We know we are different. We are aware that we have a walking, fuzzy billboard saying that something is wrong with us. It will not kill you to not know what is wrong with us, nor will it kill you if you don't pet our service dogs. Going out into
public is already uncomfortable enough without having a random stranger stare, gawk, point at us, chase us, or make rude comments.

So remember, if you aren't sure if you should do something around a service dog, or say something to the dog's handler, just ask yourself, "Would I do that to/say that about someone's boobs?"

Or better yet, just ignore the dog altogether and let it do its job. After all, that's why it's there.

If you enjoyed reading this and want to see more service dogs in the world, please consider helping the organization that I got my service dog from. These dogs change lives. I know my dog has saved mine. Even the spare change under the sofa could be enough to feed one of our dogs in training for a day.

Friday, May 9, 2014

Be Ok

"I chain words together to form sentences. I lasso sentences around the moon. You wouldn’t know it by looking at me, but I am sick." -Elaina J. Martin

I've been told that blogging is an effective form of forced accountability. If you have enough random people saying they want to hear what you have to say, eventually you will say something, even if it's just to shut them up and try to get some peace and quiet. I've been told that it's fun. That there's an audience out there for everyone. That there will always be one bored person out there at 3 o'clock in the morning that will be willing to read what you have to say simply because they have nothing better to do. I've been told that you would be surprised just how many people out there are actually willing to read what you have to say.

So this is what I have to say:

I am sick. And it's hard.

It's hard because I look well. I look normal (well, mostly- I do have a tendency to wear funny hats now and again, but that is another matter entirely). I am an educated, outspoken, tall, redheaded, 21-year-old who would only stand out in a crowd if she chose to. The only signs that there is anything wrong with me that can be seen from the outside are the permanent dark circles under my eyes that can only be covered on a good day with tattoo-covering-grade makeup & a good deal of prayer, and the walking, fuzzy, red-vested billboard that follows me around everywhere I go, also known as a service dog. I am not blind. I am not deaf. I am not in a wheelchair. I have all of my extremities in tact. I do not have any major birth defects, nor was I born with any significant mental disabilities. I am not dying any faster than anyone else I know.

I look well because I should be. I look normal because up until a few short years ago, I was. I have what are known as invisible illnesses, and that's hard.

Shall I give you a short list? We'll call it a confession.
Generalized Anxiety Disorder
Panic Disorder
Post Traumatic Stress Disorder (P.T.S.D.)
Narcolepsy with Cataplexy (as opposed to without)

In a few short years I've gone from being considered highly successful for my age, to considering applying for disability. I graduated high school second in my class with only 0.01 GPA points separating me and the girl who was Valedictorian. Between academics, dance, theatre, art, music, etc. I had enough medals around my neck at graduation that I actually called myself a walking windchime in my class speech. The writing portion of my A.C.T. was scored at 99%. I only ever applied to one college, and made it in without batting an eye. My freshman year I received so much scholarship money that the only things I had to pay for were food and books. I loved everything about going to school. I probably could have been a career student if given half the chance, and there isn't a day that goes by that I don't miss it with everything I have in me.

That happy, little, college freshman couldn't have known it, but soon even standing would become a struggle. She had no idea what awaited her- the night terrors, the inexplicable panic attacks that came from nowhere, the inability to stay awake even while standing, the gaps in her memory that would start to appear, having a pill box that could rival any old lady and instantly doubled as a maraca, having a teacher try to bar her from the classroom because she showed up with a service dog, failing a class for the first time, having to take out a student loan even though she worked so hard for so long to not have need to because she lost her scholarships from an inability to maintain the requirements, being dismissed from her first opera that she worked as the assistant stage manager, costumed, and had a named role in because she was deemed a safety hazard, getting dumped by her boyfriend unexpectedly because her health became too much of a burden for him to deal with, having to drop out of school completely and move back in with her parents, then her grandparents, and realizing that she could count on one hand the number of friends she knew before her illness that had actually made an effort to be there for her and maintain a friendship, lying in bed crying on Easter Sunday because she couldn't stay awake long enough to go to church. A

No, she never expected any of that. The world was bright, and fresh, and new, and despite her past, full of hope and excitement.

I never expected to be where I am today. I never wanted any of this to happen. There are days that I would be willing to give up everything that I am just to be normal and be able to live a normal life. Every moment of every day has become a struggle to do even the most basic tasks where as before I could do so much more with the greatest of ease.

But you know what?

It's going to be ok.