Uncategorized

Awareness IS Power.

I guess you could call me a realistic type of person; for those of us who say that we often border the “negative” side to life. We are hushed, scolded, and covered up while others keep talking about their blessed life, and glare at humans who have an outcry. That’s fine, and all well for you, but my voice and my passion does not exist without a drive…and what drives me are the faults I have been born into. It’s okay to say that. I have a very faulty life. What makes it okay to say that? Well, it’s very hard to keep endless anger and pain locked inside of yourself. My organs are heavy from a daily battle against themselves, and quite frankly, I refuse to let them swim in a secret pain so that others may continuously live a life of comfort.

fullsizerender6

The world is in a very weird, and groundbreaking place – can we all agree on that? I think because of the power of social media, life experiences, and just plain intelligence that people (and definitely our kids) are coming in tune with an “awareness.” They get political issues, social issues, climate issues, personal issues, drug issues, racial issues…all of the ugliness delivered to their LED screens, or experience this in their daily life. I feel that America’s new generations are creating a voice for themselves on racial issues, political issues, women’s rights, and yes even healthcare issues because they want to see change. All of the not-so-comforting news that the world has tried to lock away in some secret closet is finally exploding because of the want for change, and awareness. While having your head in the sand might sound lovely, appreciating and trying to help others pain is more rewarding. With awareness I feel it creates intelligent, cultured people who will connect to others easily and form a genuine respect for another persons’ life. A fabulous example of this? Humans of New York. Hearing the struggles behind ordinary faces in turn creates a sea of emotion in us, and a connection to our fellow beings.

Processed with VSCO with x1 preset

I will not hide my anger, or pain for your comfort. Yes, I will try to be positive while being realistic. I want America to see what such young/ordinary looking people with an invisible illness do daily just to breathe. I want everyone to open their eyes, and mind to what a person really feels with a terminal illness – not just what books and movies let you think. I want the world to see how much companies from movie industries to insurance companies are profiting off of sick beings – including children. I want people to be aware.

Awareness is knowledge. Awareness is power. Awareness is respect. Awareness can change anything.

-haley.

 

Hear what I’m currently jamming to under “song of the week” 🙂

Advertisements
Personal Life

The Life You Were Meant to Live.

My lungs lately have been their normal yet cooky selves, and taking a deep breath has been somewhat easy. However, I feel like I’m suffocating. After much thought, discussing, and research I found out the exact cause of what has been leaving me lifeless. What will I do to fix it? Well that is not so easy.

Many of you are about to roll your eyes, but please stay with me. I (as we all know) am very proud of my Native heritage and beliefs. Its lead me to feel things I have never felt spiritually anywhere, and I’ve met some amazing people while appreciating a culture that is dying out, and trended on. The more I’ve studied it, the more I’ve been able to understand a little bit more about life and our place exactly in it. Not only our place, but our creators, and mother earth’s place as well. What does this have to do with suffocating?

Well, before being forced into conforming Natives lived their life as they pleased, but with hard work and beautiful results. Many of you stand around in museums admiring their regalia (clothing), lifestyle, and even try to portray them on Halloween (shame.) There is a reason why you do it; its beautiful. But it wasn’t just a costume; it was their life. A Native way of life meant doing what you loved. You weave baskets? You hunt? You can skin animals? Great. Thats what you will do. We’ll all trade as one community to keep everyone alive, warm, and happy. We’re doing what we love together, while providing. We will pray to our creator, we will dance to honor the animals that gave their lives and bodies for ours, to thank our creator, and we will appreciate everything in existence given to us. The mountains, the rivers, the wildflowers…yes. That was life. That should be life. But now, many of us are forced into nine to five jobs to figure out a way to pay for these extravagant things America has forced upon us. Overpriced educations, insurances, the cost of disease, and so many others. We justify this by, “I work this job to pay for a life outside of it.” What good is it if ninety percent of it is spent at this job, and only ten percent is life? There is no life.

We are run down, over-tired, out of touch with the basics and important things in life Americans. We have forgotten family on holidays; it’s now just a time to trample others and get great sales. We make big extravagant ways to show that we love a God that we don’t study, or know, yet we can’t even love the people that we do know. We are medicated, unhappy, and out of touch with our ways people. I think our elders saw this within colonization; we would lose our sanity within money.

native

I’m not saying you should be wearing deerskin, living in a pueblo and be hunting everyday. I’m just saying; the life we were supposed to be living has been taken from you. How come the mountains take your breath away every time? Or the beach? Or the lakes you love? You were meant to be out with nature. How come you hate your job that you think about quitting everyday? You were meant to be using your gifts, and expressing your talents through these. Your love was supposed to extend into praise. Think hard about this; there were no jobs, no insurances, no money, no scary internet where people could find you and kill you. There were no credit scores, GPA’s, age, college degree’s and anything else to define you. You defined you, and so did your character. It was your people, your family, music, the creator, and nature. That was life.

That job you hate? Quit. Find something where you can express your talent. That relationship that’s dead? End it. You want to dance? Dance. Want to paint? paint. You want to go the mountains? Go. Live the life you were intended to live; because right now about ninety percent of the world isn’t.

Song of the week is Indian Summer by The Doors. Beautiful memories come to mind.

-haley.

Find Haley on Instagram! @haleyann92

Uncategorized

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.

witch

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.

Life With PH, Personal Life

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.

cornfield2

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.

Personal Life

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.

indigenous

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.

Life With PH, Personal Life

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.

photo(5)

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

Personal Life

Happy October!

Well hello loves, and Happy October if I haven’t already told you so! This is probably one of my favorite months not only because it’s an exciting change in the year, but sooooo many fantastic things happen in October. Not only can I pick up a whole bag of snickers (and use trick or treat as an excuse –psh, that’s my candy), Halloween is everywhere, Indigenous Peoples Day is celebrated (previously known as Columbus Day), but most people have no idea that it is also Black Cat Awareness Month.

IMG_7753

I live my life as an advocate for things that need my love, support and attention. One of my best friends the other night told me that I am always in search for something deeper; a deeper meaning. Thats my life. Searching deeper, digging deeper, and getting more invested. Sometimes I get so invested that I have to stop because it becomes my life, and I truly don’t mind but my lungs do. Most people would laugh at the fact that I am supporting Black Cat Awareness Month, and writing about it, but why not? Even though this is two thousand and fourteen, I feel we are regressing in our actions. We force our beliefs onto others, women still aren’t paid the same wages, we criticize those who feel the need to abort a pregnancy they don’t want because of our beliefs being pushed onto them, and people still look at black cats as if this is Salem, Massachusetts, 1692. Really people?

I grew up with two black cats, Einstein Albert and Fantasia Monaloha, and after my diagnosis found my Rocco Ricardo. I still have all three, and never looked at just their fur. In fact, I thought they were so beautiful because every color of collar looked fantastic on them! But seriously though, since I was a small child I never understood the persecution of the black cat; they were just so beautiful in my eyes. Maybe you’ve joked about it before, but do you realize that black cats are the targets of hate crimes? Some shelters wont even allow them to be adopted in October for this reason. They are the most unlikely to be adopted because of these “bad luck” bullshit beliefs.

blackcatawareness

Martin Luther King was once quoted saying, “Never be afraid to do whats right, especially if the well-being of a person or animal is a stake. Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.”

Stop living in the past. We are continuously moving into the future, and we should constantly be re-evaluating our outlook on life, on certain situations. A black cat is just another part of the creator’s beautiful gift to people. Love these animals, love other people, love you.

BLACK CAT AWARENESS MONTH.

Spread the word.

-haley.

Song of the week is, “Kick, Push” by Lupe Fiasco. Its what I need to get through this week! Enjoy!

Life With PH, Personal Life, PH Health

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.

anxiety2

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.

Uncategorized

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.

painting2

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.

Life With PH

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