Its the Kind of Tired Sleep Can’t Fix.

Well, Its November. I’m kind of in shock because yesterday it was July. Well that’s what it felt like. Anyways, November brings not only Native American Heritage month, but Pulmonary Hypertension Awareness month as well. I guess I will be speaking my mind quite a bit on these topics. 😉

Judgmental; having or displaying an excessively critical point of view.

Each time I’ve been a tad heated this week, I’ve realized it all falls back to this main source. Judgement; my biggest pet peeve. I hate being judged for obvious reasons. Its crude, insensible, it leads to bigger problems, and it really does show the most truest quality in that person. Most of the time people get to the point of blowing it off, but I’m Haley, and I want to make a fuss.

Eleven years ago, I stumbled around a middle school gym in the worst pain of my very short life. The girls, being middle school girls, glared at me along with the gym teacher who loved her “basketball” girls. She would glare across at me as if I was refusing to keep up out of laziness, but I was literally gasping. I felt it; those uncomfortable vibes itching down my back, and into my nerves. She, along with everyone else in that hour of school were judging me. I felt fat, out-of-place, stupid, and that was the first year I’ve ever encountered suicidal thoughts. I told myself right there that I, and my body were not enough. I was eleven years old.

In high school I would stumble up stairs, and again clutch my chest to endure the worst pain my body could evoke. Girls I was attempting to keep up with would stand there, roll their eyes and say, “hurry up.” They would mock that they had to wait on Haley, “Haley’s dying” and again I was not enough. I could not comprehend why the stairs tired me, and that they freely ran up them. People didn’t understand why my hair was long, why I didn’t wear makeup, why I didn’t listen to music of this era, and really they just didn’t know me at all. They didn’t bother to understand me, they just wanted to make remarks. You see, we all think this ends in high school, but it doesn’t. I was a seventeen year old, more dead than I had ever been alive. My mind, along with my body wanted to be dead.

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At eighteen when they told me I was on death’s doorstep, I literally felt nothing. For seven years people told me, “She’s fat, lazy, its exercise-induced asthma, she’s weird, it’s just asthma, you have a chest infection…” blah blah blah. It was judgement; the literal definition. People’s doubts, critical thinking, lack of compassion, and stupidity had me almost dead at eighteen. My heart was killing itself.

I, by a miracle have made it to four years. Through surgeries, painful rehabilitation, excruciating treatments, body changes I thought I would never have to endure along with medical bills. When I make it to eight years I’ll be considered a long-term survivor. I still get glares; I try to power through dancing, something I actually love and people think I’m exaggerating when I mention that I could die. No, I actually can. My oxygen drops extremely low, and I’m in tachycardia at least once a day. I’m required to wear tubes up my nose which I try not to do because I feel as though I look stupid. I see your glares, I feel your vibes as I voice my opinons, and try to find my way through incredibly difficult emotions and self hate. I know I’m being judged as some dramatic college student, but if you laid on the surgery table awake, saw your own beating heart glowing on a screen, and endured the pain of this vital organ shutting the rest of your body down, you would think twice.

I hate judgement. Its caused death, discomfort, suicidal thoughts, actions, and it’s just not love. It’s the opposite of the religion you probably preach, and its unpleasant. I don’t care about mistakes people have made or continue to make. But is it too much to ask that we progress into the future with only love for people? Trying to understand, and comprehend them? Is that too much to ask for these days? I guess so. Thats all I have to say about that, because I’m tired; so tired of this subject.

Support Awareness, support learning about people, and support loving them as well. Thats all.

-haley.

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Restore the Old; Heal the Broken.

his·to·ry

the study of past events, particularly in human affairs.

Growing up, I was the child that spent hours at my grandparents asking to look at more photos, to try on dresses, and my questions were endless. Looking back, that’s probably one of the earliest signs of a personality trait that has never faded away, and it intensified into a passion of mine. I am not a huge history buff, and I can get sidetracked easily, but I do believe in the importance of studying our past. There is so much to learn, and something special about places, pictures, and objects that have captured yet withstood time. I cannot explain the magic of visiting something older than most people around you, and I do believe there is a certain spirit attached to places like so.

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My lovely little town is famous for tearing vintage places down. Seriously though, all I have are beautiful yet aged photos of what once was, what they turned into a parking lot, or what buildings have rotted away and become empty decaying shells of interesting stories that once filled the paint chipped rooms. My heart sinks into my stomach to see such photos, and while yes I’m happy to envision the history that once existed in my town, I possess such an overwhelming sense of sadness that we did not appreciate such beautiful, and what looked like entertaining places. We have lost a majority of personality and activities to superstores, fast food chains, and parking lots. Call me crazy, but one day if we were to continue on that path, every town would look the same. No thanks. There is of an utmost importance in showing youth how to appreciate such things, or to show them a history that started this town, not to mention envelope the word unique.

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Ever since my dad showed me Summit Elementary, a school that shut its doors in 1972 because of integration, I was beyond intrigued. I thought it was beautiful, and such a waste of an incredible architectural building to just be sitting there. Seriously? Another building that this town claims to just sit and rot? The answer was yes; for forty-two years. The paint peeled, windows were broken, cracks shuttered down the stucco, and empty desks were thrown into classrooms that were once prepared for the next coming years. Spray paint covers one end of a hall making it look like the set of American Horror Story, and here I stood in random rooms trying to figure out what outdated equipment was used for. My body was encompassed by a place that had so many stories, held so much human life, and was such a pivotal piece to local history. After years of taking pictures on the outside (one that this blog was used to seeing) I finally stood among the inside overwhelmed by the still, yet sadness that my town could do such a thing. When will we start pouring money into restoring the old rather than continuously bringing in new that we can hardly keep up with? Why not restore such amazing pieces of history rather than running right over them?

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Well this downward article actually has a happy ending. As stated before, Summit decayed for forty-two years, and endured a lot of local abuse. Finally, someone saw a spark of hope, acted on it and turned it into Summit Baptist Church. While I can say I’m not a church-type person, I jumped for joy that we were putting life back into history. Someone finally saw this building as special, not just a “ghost hunt.” I pulled up to open doors, and didn’t hold back for a second before rushing inside to an old school that has itched my mind for years. Greeted by a friend, we began our walk around the building. An old stage, chipped floors, tin covered windows, and smiling pastors that overlooked all the damage. Acknowledging the ridiculous amount of work, and money for the work that has to be done, I did not feel a bit disappointment anymore. I can’t put into words what its like to stand in the middle of what feels like a war-zone, yet to be completely uplifted. The personalities, and determination as well as the focus of what they are doing to give life to this building left me feeling at peace. My itch had finally been scratched.

No, I’m not a church person, but I have never felt a greater sense of my creator in this place. From the people I met that didn’t care about the ring hanging out of my nose that I forgot to take out (oops), inviting me to the lunch that they prepared there, and the amazing yet earth shattering conversations that took place within those walls, I was drawn there for a reason; the type of reasons that leave you with hairs standing on the back of your neck. I believe there is nothing more truly artistic than to love people, and I felt it radiating within the building. I just want to congratulate, and send loving yet home-warming wishes to the Pastors that have made this their project, congregation, and believe in restoring this history. It truly is a form of art. May the creator himself bless y’all in your future endeavors, and challenges.

-haley.

War, and Ebola, and Evil, Oh My!

Oh, this is a season known for such beauty, and in contrast, the fright. It’s not uncommon to be terrorized this time of year, and most people seek out those experiences. However, when the terror leaks into the light and confuses itself with reality, we reach a whole new level of terror that is almost unnerving.

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All I see on my Facebook, and hear around the office is somewhere along the lines of, “the teacher got arrested, this hurricane hit, blood moons, and ebola.” What about that is pleasing? What about that makes my heart happy? “It’s important to be involved in current events.” Except no, it’s really not, not anymore. I think its more important to track history, and be consistent with your learning and perception. But why sit in front of a screen that delivers the most awful things right into your mind? And people ask me why I don’t watch TV…

A few weeks ago, I got super worked up about the end of the world, the blood moons, ebola and just about everything else the news thought they needed to grace my news feed with. Thanks, Facebook peeps. You officially got into my head, and for a whole week I thought endlessly about how fucked up the world is. I barely slept (I was afraid the world might end in my sleep) and I couldn’t think straight. Some people call me a person affected with severe anxiety (which is true), but today when a parent called afraid her child might have ebola, who hasn’t been in contact with anyone, or any country of the sort, it seems I’m not the only one. We share articles on Facebook repeatedly over awful, negative things that are supposedly news and it’s really just self destructive. There is a difference in awareness raising (for example: Blackfish) versus ridiculous negativity. After hours, or days of reading, you evolve to a state of living in fear.

End it, and accept there is nothing you can do. Literally, there is nothing. That blood moon is going to happen whether you got a picture or not, and that group of terrorists is going to kill someone next. That disease will infect who comes in contact with it, and there is literally nothing you can do. Its horrible sounding I know, but its the most freeing thing you will hear despite what you keep reading on news channels, and Facebook. What is the point of bottling up every thought, and action you want to have simply because the world might bite you on the ass? Its scary, but there is no point in living in fear. I guess if I get ebola (which I refuse to capitalize because it’s so horrible) but until or if that ever happens, I’m doing what I can to protect myself and I’m living life without fear. I can’t walk around all day with a rock in my stomach. You should take precautions but fear is never, and should never be one of them, despite what the media wants you to think.

Seriously, stop sprinkling that shit everywhere, and instead spread happiness, kindness, positivity because the world needs a whole lot of it at this point. So, I hope you lovelies enjoy your Halloween week getting scared from awesome things like The Shining, or freaky costumes versus things you have no control over. Enjoy, and live your life.

-haley.

Exit Here.

I’ve had some people contacting me over a subject that seems to scare them in this scary time of year; I am no longer PH centered. I know, its shocking to you, but it’s not to me. I think no longer just focusing on PH has given me a breath of fresh air into other subjects that have consumed my heart.

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You see, I’ve been passionately writing since I was in the fourth grade. I remember the exact day that the lesson “clicked” and this writing thing became easy. I was scoring Fours (four being the highest in Texas) while everyone was struggling to make it halfway down their little notebook pages. My thoughts have flowed onto a paper naturally, and I’ve enjoyed it. I stopped writing around sixteen. I have no idea why, but really I had nothing interesting in my life, in fact I was sleeping most of the day. After I was diagnosed, Pulmonary Hypertension gave me an angry and emotional trigger, and just like a bullet, I fired. All of my thoughts from years of silence flowed out onto this blog. I can’t believe I gained an audience, and I am forever grateful for my PH family, the conference, the wonderful thank you letters, and my award sitting at the front of my room.

My PH writing itch has mostly been scratched. There will always be more to cover as new challenges approach, but I have other things on my mind. I am an activist at heart. I don’t want to be the ugly, screaming activist, but I do believe in justice and broadcasting the truth that people mostly miss. That simple statement has a lot of you upset. Some have contacted me asking why I’m not writing, some of y’all refuse to support and voice your opinions on such, and while I respect that I can’t understand that. I cannot live and breathe PH daily because PH is a disease that does not believe in giving “breaths.” I have nothing against my disease, or my PH lovelies, I just don’t feel a desire anymore. I am currently at peace with my disease, but not other subjects that come to mind. I want this page to be something you can come to reflect on for new articles, or search old PH issues that I might have covered in the past. But lets just get one thing across about Haley Ann; I am not a people pleaser. People pleasing is one of the weakest things others can succumb themselves to. You simply cannot please everyone, so what is the point of trying? Please yourself, and do what is right.

So I hope that with all this being said, you can support the blog after the PH years that hopefully it supported you in. There are stages in a disease process, and all are different just like the patients themselves. I am merely exiting one phase, and transforming into another. Thank you (hopefully) for your understanding.

-haley.

Song of the week is “You Sent me Flying/Cherry” by the lovely Amy Winehouse.

hecheto welo! (It is Good.)

Happy Indigenous People’s Day!! Oh, yes, how could you not expect that from me? 😉

I’m so glad that some places in America have come to their senses to change “Columbus Day” to Indigenous People’s Day, yet here I sit in my hometown with everyone educating their youngsters on Columbus. Oh, lord help me.

You see, when spreading this news I’m encountering a lot of people who say, “Why are we just now changing it after all these years? Why not leave it be?” I translate that to, “I have this massive tumor growing on my back, but why take it out after all this time? Why not just leave it be?” Does that make sense? No. When did doing the right thing become exhausting, or not worth doing after quote “all this time?” Why change this to Indigenous People’s Day? “To reflect upon the ongoing struggles of Indigenous people on this land, and to celebrate the thriving culture and value that Dakota, Ojibwa and other indigenous nations add to our city.”

You see, people can argue all they want, but Columbus didn’t discover anything other than Native Americans who had been living on this beautiful land for a while. And it wasn’t just “Pocahontas” and the one tribe wearing warbonnets running around. It was countless Natives, very different by the numbering cultures and tribes that occupied this land. It amazes me to this day how we can continue to bury our head in the sand when it comes to Native culture. Its “weird”, “Makes no sense”, its “intense”, and to some people its just a fashion statement or trend. That buckskin dress? It was hand-made by the woman wearing it, and she earned if after hours of butchering that meat. Its bead-work is a symbol of her strength, her relationships, or her beliefs. The paint, feathers, or warbonnet? They all have specific symbolism, strength, and a sacred meaning to each tribe. Native American extends past the surface of “dressing up and looking cool” into a way of life, the only way of life they knew. Your Halloween costume, “Aztec” print/thunderbird/”Indian headress” shirt is not cute. Bottom line; the Holocaust of Native Americans was and is a very real thing. Millions were murdered, slaughtered, taken away, and forced into civilization. It’s not a joke, and despite how much your history book tries to cover up, it happened.

“By awakening the Native American teachings, you come to the realization that the earth is not something simply that you build upon and walk upon and drive upon, and take for granted. It is a living entity. It has consciousness.”

This was their land, their life, and many of their ancestors were buried here. Then, their children were buried in mass graves after they were slaughtered. You’d think America would provide one holiday for this amazing culture to gain more awareness and strive, but no. We gave it to Columbus who “discovered” this land?

foundingfathers

“Columbus did not embark on a simple voyage of exploration — it was always intended as a voyage of conquest and ultimately colonization. Columbus indicts himself in his journal as one of the most prolific slave traders in human history, buying and selling more than 5,000 indigenous people, and helping establish a brutal system of forced labor. Just decades after Columbus’ arrival, the indigenous population had been reduced by as much as 90 percent. This city should not honor a man who played a pivotal role in the worst genocide the world has ever known. Transforming this day into a celebration of indigenous culture and social justice is not merely educational in nature–it also allows us to make a connection between this painful history and the ongoing marginalization and discrimination and poverty that indigenous communities face to this day.”

Call me crazy, but I just don’t feel like celebrating a Holiday one in which Banks use an excuse to close, to honor a slave trading and racist man. Now Italian-Americans are deeply offended, and feel like they have lost a piece of their heritage. Yea, I know what you mean. By seeing everyone dress up on Halloween as an “Indian”, or not respect a culture that was here longer than the people of today, I feel like I lost my culture too…one that your dude took…not to point fingers or anything. I’m sure that Sitting Bull, Red Cloud, among every woman slaughtered and raped felt deeply offended too.

columbus

You can turn your head and teach the “Columbus sailed the ocean blue” crap, or you can teach, and know what needs to be taught. A beautiful culture that was taken from the land that you are living on. Natives were intense, but among those intense people (just like we have intense people today) they had some very wise and on-point views on life. Not to get biased about my own culture, but the way they treated this earth, and respected it, it always provided for them in return and they lived fulfilled, and enriched lives. They were in tune with their creator, they danced, they prayed, they believed in doing what made them happy while keeping close with their love and families. They were very focused on the proper upbringing, and belief in their children’s potential. “Let us put our minds together and see what life we can make for our children.” -Sitting Bull. All of this is merely scraping the surface into this amazing culture. Oh, how different life would be if things would’ve never changed, or at least people were taught these same values. Life was based on thanking the creator rather than taking. Prayer rather than hateful words, and dance instead of destruction. Tell me that is weird, intense, or unrealistic? Sounds a lot like what we should be doing as Americans. Praying, dancing, remembering our creator (for those who want to) and respecting this great Mother Earth who is constantly giving such beautiful and healing things to us.

“Regard Heaven as your father, Earth as your mother, and all that lives as your brother and sister.” Native Wisdom

Happy Indigenous People’s Day.

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Song of the Week is Red and White by Northern Cree to honor my beliefs and heritage! Hit play, and indulge yourself in a different culture. It will be something you aren’t used to, but I hope you enjoy it anyway. 🙂

-haley.

NATIVE PRIDE.

Human Hurricanes.

My life is so full of physical limitations, but I still become that person where if you tell me I cant do it, I will. But sometimes when I find myself breathing harder, or losing consciousness (oops), I realize that maybe working my physical body is not my calling. While looking at someone who is physically appealing (those fabulous abs, and arms) it shows this discipline and strength that radiates off of them. But what about when you choose to constantly work on or workout your soul, and heart? Yea…what? A renovation, or working on your soul is probably one of the hardest things a person can do. To change themselves internally, to change everything they think they’ve ever known, or to work on something that is not tangible. It sounds insane, and most of the time you feel insane when you realize that maybe something things in this area will be, um, hard to reconsider. Understatement.

You see, for a long time I really didn’t care about people. I floated through high school on a very unhappy cloud (I have no regrets) and didn’t give two damns. I’ve always cared to an extent, but not once did I exercise a bit of patience with anyone or myself. Working with young children was a turning point in my life. I was working with tiny, and happy souls, some more than others, and they felt everything so deeply. They were brand new, empty of judgement, and they hadn’t reached this adult stage yet; they were not broken. I saw the humanity in their eyes as I felt their tiny arms wrap around my knees. Everyone was here at one point. We are still human, and despite how much we choose to cover it, we are so worth loving. Extending past my Pre-K and first grade experiences, and onto fifth grade, these tiny humans were hormonal devils. They were going to show you how insane, mouthy, experimental and defiant they pretended to be before they were ever funny, or told you how much they cared about you. Despite the fact they were leaving me for middle school, I still saw them as a version of my pre-k kiddo’s with a few bumps, and scrapes society left upon them. But the days they buried their faces into my shoulders crying, screamed my name down the hall because they were excited to see me, or felt the need to deliver me Valentine presents were worth the awful human hurricanes from time to time. But, I believe there is a hidden beauty in each person, and I so deeply want to find it, and teach them how to radiate it. Seriously though, it’s there in everyone.

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Overall, that job worked me internally. I might not have abs, but my heart has been strengthened more than I thought possible. I felt things beyond deeply, my stomach fell into itself sometimes, and you never knew when you had to step into an empty classroom to cry for a second after handling a situation that blindsided you. That job made me see the humanity in this society (sometimes the inhumanity as well) and showed me that every person is so worth loving. It taught me a lot about my disease, my life, and how much I choose to love others. People will often say, “I just don’t like that person” , “They are so difficult to deal with” and I find myself loving that person the most. Why? As I’ve heard many times “the people who need the most love will ask for it in the most unloving ways.” My response? Everyone is So Worth Loving.

Check out the beautiful company that I am beyond a fan of, So Worth Loving, and their blog post about my story. I hope they show you the worth that exists in you, and other people.

Dedicated to all my wonderful students. Even though I was the teacher, believe it or not, you taught me too.

-haley.

Instagram @haleyann92

Internal Explosives.

Life is full of so many demons. Some we encounter, and others live inside of us which sounds like an episode of American Horror Story. Its been really hard to stay focused lately, to slow down, or to do anything productive other than my full time job. Why? Because I am the literal demon in this situation.

Anxiety was never a thing I took seriously, in fact, I didn’t even know it was a diagnosis. But as I sat across from a Doctor, and described my daily routine and thoughts attached, he diagnosed me with severe long-term anxiety. What? But as a flip back through family memories and pictures, certain moments come to mind. The thought of even rain sent me into a crying fit, throwing up before performances, feeling sick whenever I had to leave my dad, and having to have someone at the house with me all the time. As we get older, its not just storms but people, certain songs, walking around the house a certain amount of times before I know I can leave it, and all of this just adds up to be little emotional triggers; triggers that launch a explosive anxiety bomb in my brain.

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Whats it like to have anxiety? Its like seeing something that bothers you, and replaying that situation over and over again in your mind, thinking about all the horrible outcomes and what could happen, and either acting on that stress and venting to someone only to annoy them, or choosing to live with that sickening feeling. Its like laying in bed awake at night because you know the rare disease you have causes blood clots, and your worst fear is to die in your sleep, and you just know that even right now one could pass through your heart or brain and kill you instantly. So, you decide to stay awake. Its like worrying about your family’s safety because they didn’t answer the phone, you think you left the coffee pot on, and you cant focus at work because you just know you will come home to a house that was burnt to the ground. Anxiety takes away my peace of mind, my will to do things, it wants to me stay at home where I’m comfortable and not have to deal with anything that could trigger anything else. Yes, thats how bad its escalated. Dealing with people that have anxiety, I could only imagine is not fun. But your actions unfortuntely play into theirs. We need you as support, and a calming ressurance, not someone who makes us feel crazy. You doing that could actually make us crazy. What exactly do we need from you?

Understanding. You may not get how our brain works, but its locked up in our body. We don’t appreciate how it works, and you definitely don’t, but we need you to be that relaxed force for just that moment.

Genuine Concern. When you tell me to calm down, you’ve just evoked the powers of an anxiety hurricane. You made me feel stupid, out of control, over-exaggerated, and you’ve just triggered every other emotion along with that too. I know you do want us to calm down, and we do too. Think that all you want, but talk to us. Why are you feeling this way? What can I do to help? Lets take a couple breaths, and talk about this. Now that makes all the difference.

Don’t make fun of it. Its a serious problem, and I wish my brain didn’t function this way, but it does. It has since day one, and making me feel stupid and crazy doesn’t help. In fact, it makes me distance myself from you, and it makes me hate me. I’d rather overdose on anxiety pills than deal with this feeling. You merely get to hear about how my brain works, you don’t actually feel the internal thoughts. Its exhausting.

So this loves, has been a huge hindering factor on my life right now. One that I’m trying to control, but as stated before, its exhausting. Its no surprise that anyone who might’ve been diagnosed with something would have anxiety. If you feel like you do, then please talk to your primary, and a therapist. We already live with a chronic fatigue, so why add to that? Free yourself.

-haley.

A Sad Little Fantasy.

A couple of years ago I saw a picture on Pinterest (are we shocked) that said, “What messes us most up in life is the picture in our head of how we think it is supposed to be.” That quote in itself about summed up about the age of fourteen through twenty for me. Despite the happiness, and hardworking front I can put on, there will always be an impending sadness that I am continuously attempting to work through.

I think a couple of years ago when I realized I could let go of some very damaging things, mentally I was free; for a little while, that is. You see, despite how they act, or what they say I know people think I’m crazy because of how ridiculous I can be. I choose to be the person that laughs the loudest, has the outrageous stories, the most ridiculous twist and turns, and I also choose to be stupidly positive sometimes. For a very long time those “stories” and “twist and turns” were nightmares, and very long nights of convincing myself not to just end things. I choose to laugh because at this point, it’s all I have left, and why not be the butt of everyone’s jokes? Why not just love people instead of yell, or get enraged? I don’t see the point anymore. I chose to toss that expected picture of life out a long time ago, and create my own.

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For time to time I focus on just reality, and it spills out onto my blog in angry protests and I have to pop a Xanax. I can read through your Facebook posts about ISIS, how downhill kids are these days, and all these wonderful people dying of the disease that I just happen to have, and I find myself in a corner of fury. I don’t find that fascinating at all. So I’ve built my own world full of writing, Nat King Cole, That 70s Show, Augustus Waters, I Dream of Jeannie, Rocco Ricardo, wonderful art, and I am happy. I know it’s an illusion. My writing is not famous, Nat King Cole is dead, no one knows what I Dream of Jeannie is anymore, and there is no Augustus Waters, only men who are weak-minded, and cats are better anyways. There will always be an impending sadness that my little haven isn’t reality; but within this fantasy I feel safe. It’s the only way I can achieve happiness these days.

I’m tired of trying to control reality because it’s just not going to happen. Are you doing that? Are you spending more time focusing on what you can’t control versus what you could be doing right? Love other people, that is something that can be done. Being that one light in a person’s life; that can be done. Focusing on what makes you happy rather than posting on what is going wrong; try it.

Life is not supposed to go any particular way, sometimes it ends before you get to finish it. Stop letting the picture mess up your creation.

-haley.

P.S. Song of the Week is still Rain Song by Led Zeppelin. I just cant get over it yet.

Hollywood is Still Hollywood, and I Am Still Sick.

Being a sick young adult in this world is not straightforward path. It’s a winding road full of surgeries, painful treatment, people who might not believe you, and even companies demanding money for saving your life and threatening to not save it anymore. With that being said, anyone who isn’t sick will not understand the sick. How could they?

The first thing I say when someone is experiencing a situation that I have never personally dealt with is, “I really don’t understand what you are going through, but I am here.” Why? Because it’s the truth. I think it’s a high form of ignorance to try to relate understanding when we really do not understand. How can we be understanding when we’ve never stepped into that world, we’ve only had a slight view of it? It’s completely different to see something, then experience it. You can watch someone chug vodka yet remain sober, but its different when you are the one chugging it too.

Lately I’ve spent some time reading very well written articles about how this is the year that social media is portraying “sick kids” and how it’s in style. Often I catch myself thinking, “no this isn’t a movie prop” when I walk around in public with my cannula up my nose. I definitely feel the anger as movies like The Fault in Our Stars rise to fame, and people become obsessed yet fail to realize that these sick kids are real, not just lovely on-screen actors. I’ve felt that ridiculous anger, believe me. These articles go so far as to say, and quote:

“But teenagers with illnesses do exist. I am one of them, and it hurts to see movies and television glamorize our suffering.”  –Lillie Lainoff at Yale University

But amongst this rage, I had a lovely realization that is much easier to deal with than that annoying anger which I have every right to feel.

When I noticed the white and black clouds of a bright blue book at Hastings, it succeeded in triggering me to read the back. I didn’t have seventeen dollars at the time (I know, ridiculous) but I ran back into the store on payday, and immediately made it mine. The minute I read about Hazel’s cannula I laughed and screamed. I was hooked, which is an understatement, just like all of America. I wasn’t enthralled because Augustus is “so cute”, or Amsterdam is romantic, but I was enthralled to read that someone could describe my feelings on paper. It was refreshing to read of an illness which you think I would be sick of; pun intended.

I can’t say for other TV shows, or movies, but I’d like to think that The Fault in Our Stars was anything but glamorous. So many people, including myself, described it as emotional death. Yes, it needed a little glamor because it was in fact a movie, and it was nice to experience butterflies for just a bit before impending death. I think what I love about John Green is not only his intelligence, but how realistic he is. His writing is real, and TFiOS is raw. John Green was a chaplain in a children’s hospital which inspired TFiOS. As John Green has stated a long these lines in an interview, “What struck me about these kids was the fact that they weren’t always smiling, they had no amazing wisdom just because they have cancer like everyone thinks, but they were just kids who happened to be sick.” Exactly. As I saw Augustus’s missing leg, Hazel’s hospital visit, her rapid breathing, a shitty author with a twisted view of sick children, and the raw yet horrifying scene of Augustus throwing up and screaming that he “hates himself” days before his untimely death was not glamorous. A lot of people actually hate TFiOS because it wasn’t perfect. But those scenes, as many tears as they provoked, and as much my heart hurt, I smiled. Those feelings were so real; those scenes were amazing. I hate myself when I have to sit down because my body is failing me, and everyone else gets to do what they want yet I am once again reminded of my own fault.

The fault in people saying “Hollywood has it wrong, and is glamorizing my illness” is that they are looking to people for understanding where understanding is not due. Stop getting mad because you are searching for understanding which is beyond unrealistic, just like this show titled, “Red Band Society.” That show may be unrealistic, which from my research it does in fact sound like a shitty portray of disease, but I think its lovely John Green wrote this real book, inspired by real kids, and it ended very real. Dont attack TFiOS. He wasn’t looking for people to understand, or glamor, he just created a lovely work of art. I personally experienced a version of that story, but I know that a lot of people who saw that did not, and they probably never will. They wanted Augustus to live, and hated Hazel’s walls that she built around herself, but I have a version of those walls, and I accepted Augustus’s death. It still sucked though.

So yes, I am aware of the anger of feeling like my oxygen is a movie prop, and the possessive thoughts of feeling like TFiOS is “all mine” and that these teen girls are clueless. But I catch myself in remembrance that I am expecting understanding where it is not due. Those kids will not understand my story, they weren’t meant to, and they can’t help it. They can only see my story, and respect it. So appreciate this art, The Fault in Our Stars, rather than bashing it. Because when they buried Augustus Waters, and Isaac couldn’t even see that because he just had his one eye he had left removed, I felt anything but glamorous. I smiled though, because I knew that I was a rare person who has cried those tears, and had those exact thoughts. I understood, I felt it was meant for me, and it was beautiful.

faultinourstars

-haley.

Instagram @haleyann92

Dont Ask.

Naturally, when you reach a certain age you are asked almost every day if you are “dating”, “seeing anyone”, “talking to anyone”, or god forbid “getting married.” No, no, no, and hell no. And guess what? I’m not available either. I’m not against any of this, and if you are then go you. I will be sure to mail your gold star, but stop asking me. I don’t get offended, I just get tired.

You see, at one point in my life that was my life. Utterly focused on the future, all I saw were children, a wedding, and BOOM that was it. That was all I ever thought about, and not an ounce of effort was put forth past it. Yea…things are slightly different. Not to re-hash old shit, but my world fell apart. I picked up the pieces, got over it, and once my world was somewhat put back together it was no longer the same place. For a long time I searched for who I thought could be a new “love” and all my efforts failed. As I sensed their lying, playing, stupidity, it just aggravated the fact that not only did I feel stupid to be looking, but I wasn’t ready. I’m still not, and I don’t care if I ever am.

bookcat

All my friends out there who had a kid, got married, getting married, or have serious loves, then go you. You are doing what you want! I can truly honestly say I’m not pulling a “cat-lady” moment saying that I’m happier single, but truthfully, I am. I don’t want to be criticized for it either. Yea, I check the single box on all my tax, and important documents. That box literally looks no different from the marriage one, except the wording beside it. My cat and I are very happy together y’all.

I’m glad that your marriage makes you feel complete, or your children. I really am! I desperately want my children someday, but I want my vodka, and book first. I may want my kids, but I can honestly say that I really don’t ever know if I actually want a marriage. Sorry that’s a jagged pill to swallow, but its the truth. I don’t crave a romance (unless I’m listening to Nat King Cole, or reading John Green) but hey, its fun to pin wedding crap on Pinterest! Maybe one day I’ll date, maybe marry, maybe not. So no, don’t ask me if I’m dating, or talking, or getting married. That was once my world, and what an awful and lonely world that once was.

-haley.