Life With PH, Personal Life

Takes One to Know One.

I guess, emotionally, I’ve come to a stage where I feel “checked out.” Nearly everything I do when It comes to talking to people, attempting to write, and even watching a movie, I feel as if there are no feelings left right now. Emotional drained, whatever you want to call it, that’s how I’m feeling. Really, I have no idea why I’ve reached such a weird spot, but I have. I think back to The Fault in Our Stars, and of course I become like every teenage girl, melting into a puddle on the floor when Augustus comes on-screen. But for me, it goes deeper than the superficial feelings of “he’s cute” and “he says all the right things.” For me, it strikes a deep chord of acceptance. He doesn’t care about Hazel Grace’s oxygen, in fact he teases her, helps her, and understands that her lungs suck at being lungs. He understands the seriousness of being checked into the hospital, and the mental torture we go through as patients not to be “grenades.” He doesn’t care, and he’s still there with his non-lit cigarette hanging out of his mouth, and escorting her around.

augustus

I wonder sometimes whether it takes the sick to know the sick. The whole, “takes one to know one” phrase has crossed my mind many times. Diagnosed at eighteen, I was fresh out of high school, and had literally been a so-called adult for maybe a week. I was still a kid at heart, and so was the kid I had been dating for a long time. I guess you could say that Pulmonary Hypertension was the equivalent of being T-boned by a semi…for him. I saw this so-called semi coming for a mile now. I felt my lungs, I felt how much work it was just to stay awake all day; I knew it was coming. The mental side in which not only attacked me, and tricked me into hating everything, attacked him too. Who expects two eighteen year olds to deal with surgeries, oxygen machines, mental acceptance, and acceptance of each other? It’s almost impossible. You really don’t even know yourself yet, but all you supposedly know is “I hate myself, and I should die as how my body intended.” Yea, a giant bolder in a tiny pool. It’s not fun. What was shock, turned into superficial acceptance and support while trying to figure out what was going on, which turned into being tired, figuring out how tough this is, finally understanding these shitty lungs aren’t going away, boredom, moving on, making fun of the disease, non acceptance, and separation.

There was no Augustus. There never has been. I don’t blame him, it was a lot for me to handle, let alone him. As I meet all these new supposed “men” they still don’t understand. Not to show hate, but they don’t ask the questions, they really don’t comprehend that taking on me is taking on an emotional Olympic course. “It’s no big.” While I want someone to treat it as if it’s “no big”, I also want that balance of they completely understand how big this lung monster can actually be. Just saying. They have no idea. Maybe if they did, they would run like him. I really don’t blame him, and sometimes the little things he did of showing his superficial “Augustus” side can make me smile. But I stopped trying to explain my lungs a long time ago to certain guys; It takes more oxygen than it should. Overall, I just loved the story of Hazel and Augustus. I think it fell together beautifully because they both knew what it was like to be trapped in a failing body, and to hate yourself.

Only the sick understand the sick.

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Enjoy our song of the week, Let Me In from the Fault in Our Stars official soundtrack.

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Life With PH, Personal Life

Attitude Adjustments.

Attitude; Thats such a negative word to me. In fact, I just had discussions with some of my fifth grade girls, and how they are over loaded with it. I make them think that because they are growing up they need to learn how to drop this so-called attitude, but who am I kidding? It only gets worse with age sometimes.

This simple little moody word has a lot of power behind it. It’s a force of destruction, a glimmer of hope, and a knife in someone’s heart. When you step back, really look at yourself, and evaluate how you communicate with people you start to see that without actions, you’re left with your words only. Your ONLY communication. Your attitude; It can take a life of its own, and overpower you if it wants. What vibe are you giving off? How are you communicating? Whats overpowering you?

I’ve seen so much attitude lately that it completely blocks off any actual communication. People just don’t want to listen, they just want to be mad. They want to jam their words into people’s feeble ears, and make their points boldly. In return, you were never heard. I’ve seen humans with such bad attitudes that the oxygen in their nose is no longer beneficial because spiritually, and emotionally they just cant believe in themselves, or others. I’ve always said you had to drop barriers to let the good overcome you. Nothing will happen with a door shut. Drop it, open a door, and open your ears. Listening to others more thanĀ  you speak, being patient more than being forceful, looking for improvement rather than making points is so much more helpful.

Attitude; it can be a lifesaver. Literally. I had such a bad one about my disease. I really wanted to just exist within it rather than fight it. Developing, listening, improving really did change things. It changed my outlook, it changed my attitude. I became a teacher instead of a cop. I felt like instructing, and listening more than I did pointing out error. Some of us even had to make attitude adjustments about wearing our oxygen, me included. My attitude saved my life. Step back, and really evaluate yours this week. Is it worth changing? Because you are worth it.

Congrats to Karla, our contest winner! Thank you to everyone who submitted a “Hazel Grace” picture! They are all so beautiful. Our song of the week is So Many Details by Toro y Moi. Enjoy!

oxygencollagewinners

-haley.

Life With PH

Throwback Thursday.

So in the spirit of Thursday, I thought I would participate in a little throwback.

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This picture. It was taken in possibly November 2010, when treatment was unsuccessful, I had just spent an entire week in Houston trying to find a treatment, and I was having to wear oxygen. I was pale, I was cold, and yes I have tubes in my nose. As you can also see, I’m in my own home because I wouldn’t have been caught dead out in public wearing oxygen. Why? Because for so long oxygen tubes have been nothing but a symbol for the sick, diseased and elderly. It’s not attractive, and most of the time people stare. So why mess with it?
I love that my point of view has changed dramatically, and it’s going to be funny to see if America’s does too after June. What I love about John Green is that he gives you raw information and makes it beautiful. He puts ugly truth into a paragraph, and it’s amazing. He put a girl wearing oxygen twenty four seven into his book, and made America fall in love with it. Pretty soon, that same girl (Hazel Grace) will be on the big screen and no one will be able to hide their eyes from seeing the cannula crammed up her nose. No one. He made oxygen, this ridiculous annoyance, beautiful.
I think it’s sad that patients like myself, and most teens compromise their health in order to appear normal, and don’t in fact want to wear their oxygen. It shouldn’t even matter anymore. Loves, you were never normal! Don’t throw away and damage your body even further to attempt at existing in a normality that was never even there in the first place! You were always PHenomenal. Wear your oxygen, proudly.
DONT FORGET! This is the LAST DAY to go like the Facebook page to possibly win a just breathe t-shirt!! Check out the contest tab for more info. facebook.com/phenomenalhaley

-haley.