Friday, March 28, 2014

Humanity Leaves Me Breathless

Over my spring break, I went to a pulmonologist for my breathing issues, and I received some breathing tests.

For the first part, I had to breathe normally. For the second part, they made me breathe in methacholine. This is a chemical that people are sensitive to if they're basically, it's supposed to make it hard to breathe. Does that sound scary to anyone else? Because it totally freaked me out!

"Hey, breathe in this chemical and hold your breath so that it penetrates deep into your lungs." !!!

The tester, a respiratory therapist, increased the dose of methacholine incrementally, and the first few doses were fine, but by the fourth or fifth one, my chest hurt and I was short of breath.

I sorta-kinda knew that I failed because she grabbed an inhaler and said, "I know that you're usually only supposed to take two puffs at a time. . . but I need you to take six."

So I've since been diagnosed with asthma. I'm on a stronger medicine now, so it hasn't been too bad. Except when people smoke in the hallways. Which I'm pretty sure is illegal.

I don't know which of my neighbors is the culprit but somebody is getting the hallway all smoky and then covering it up with perfume...both of which make it hard for me to breathe. This happened last night and I didn't even realize it -- my door was closed, and I didn't smell any smoke or perfume, but suddenly I felt like it was hard to breathe. One of my friends heard me coughing and texted me, "Use your inhaler and stay in your room" because she had ventured out earlier and realized.

It's just frustrating that I have to deal with breathing problems because a couple of people decide that they want to smoke indoors.

Otherwise, my life is going pretty well. I'm settling back into the routine of school after spring break, and I'm enjoying catching up with friends. My classes are interesting, too (except chemistry!).

And the majority of people on my campus are amazing individuals. The other day, I was having another episode of breathing trouble -- nothing too major, but I couldn't manage to shake off someone who was smoking behind matter how many times I stopped and waited for him to pass, he seemed to be right behind me! Barely anyone on my campus smokes, but it seems like I attract them or something. Sigh...Anyway, it wasn't a huge deal, but I ducked inside of a campus building and sat on the steps to catch my breath, and a girl whom I barely know approached to ask if I was okay. Later, she sent me a message on Facebook to make sure that everything was fine.

This is is far from the first time that my breathing troubles have shown me the wonderful side of humanity. In fact, it's happened so often that I'll probably write a post about it when my to-do list isn't running off the page. :-) There are so many amazing people at my school.

I guess the bottom line is this: for better or for worse, humanity leaves me breathless!

Wednesday, March 26, 2014

When Unfair Becomes Dangerous

When we first met, she apologized for saying hello to me when I was in the presence of my other friends. I told her that she IS my friend, that she never has to apologize for saying hello.
Meanwhile, my heart was breaking.

Because we live in a world where people feel as though their disabilities make them inferior, unworthy of friendship, less of a human being.
Because I see the way that people avoid meeting her eyes when she looks at them.
Because one day, as I was walking back to my dorm after one of our conversations, I overheard her say, "Wow! Somebody actually acknowledged me!"

She has autism, but she is so, so much more than that. I just wish more people would take the time to talk to her. I won't share the details of her personal life on here, but I will say that she has a beautiful heart. She works at my dining hall, so I see her often, and she always greets me with hugs and smiles. Before I leave, she reminds me to be careful in the ice and the snow.

"You are a like a sister to me," she said. "I'll always look out for you."

I look out for her, too.

Recently, she came up to me with sadness in her eyes and said that she was scared for her health -- because she has asthma and she's not allowed to carry her inhaler with her. I asked her if she had easy access to one if there was ever an emergency, and she said no, that they don't even allow her to keep it in the vicinity of where she works. And then she said that she was upset because they [the people in charge?] accompany her to her doctors' appointments even when she feels uncomfortable with them listening in, that they don't give her time alone with the doctor to ask personal questions about her health.

"Speak up for yourself," I said, "because that's not right at all. For your own safety, you should always have access to an inhaler if you need it, and you should be able to feel comfortable asking your doctor questions."

I don't know all of the details of the situation, but it seems to me that she's being taken advantage of. Maybe the people in charge are simply ignorant, or maybe they think that because she has autism, she won't voice her concerns. I told her that she needs to talk to them about these situations, and if they don't listen, to mention her concerns to both her mom and her doctor. I realize that maybe she's not allowed to administer her own medicine, but the people in charge of taking care of her should at least have an inhaler on hand if it's documented that she has asthma.

I don't know about the logistics, but I do know this: she shouldn't be fearing for her life.  

Monday, March 17, 2014

Still here!

I can't believe that it's been almost a month since I've last written.

I guess that's not exactly true . . . I have written. Light-hearted letters to friends with inside jokes in the margins, script alternating between loopy print and scrawling cursive and peppered with hearts and smiley faces. Essays about my life for my narrative nonfiction class filled with heaviness and sealed with tears, typed out in stretches of double-spaced sentences, proof that Word documents can contain parts of your soul.

You know when you're walking with a heavy backpack and it weighs you down and makes your back ache and slows your steps? And then you swing it off your shoulders and suddenly the heaviness has disappeared and you feel as though your heart is feather-light? That's how I feel when I write, when I let the words spill out onto a page.

  And yet, when I've spent hours typing into a Word document for my writing class, it's almost as if I'm afraid to come to my blog and write more, because if I take that backpack off too suddenly, I might just fly away from all of the lightness. ;-) Sometimes I feel as though the words that I don't feel obligated to share serve to keep me grounded . . .

Lately some of my friends from outside my writing class have been asking to see my pieces, and I'm not sure what to do. A lot of my writing is about my disability (though not all of it) and I almost never discuss my CP in spoken words, so it feels strange to share this side of me. And then there's a part of me that's afraid it will change things, change the lightness of our friendships. Sometimes when I tell people my story, they look at me differently. I can see it in their eyes and I'm not quite sure what it is, exactly, but suddenly I'm no longer a college kid. And then part of me wonders if I'm being selfish by not letting them see this part of me.

It's hard to share. I need to share. There's something beautiful about sharing words with someone else, and yet there's something equally wonderful about holding those words close to your heart, tucking them inside of yourself.

Anyway, I guess that's enough rambling for now. I miss you guys and I really felt as though I needed to write something here today. xoxoxo