Friday, September 26, 2014

Unnamed



About a week after my cat went missing, I sat at my piano and just let my fingers release my emotions. A few minutes later, my mom stood in the doorway and watched.

"That's a pretty song," she said. "What's it called?"

It doesn't have a name. Somehow, something is lost in translation when I try to put it into words.

And that's why I've been silent lately. I just can't put everything into words right now. Because life has been crazy lately. Crazy hard. Crazy scary. Crazy beautiful. Crazy awesome. Crazy.

A couple of weeks ago, I sat in my room surrounded by my friends as I struggled for breath and everything was fading, nebulizer pressed in my lap, someone's distant voice saying that my lips were turning blue. And when the medicine finally worked and I could feel the breath filling my lungs again, that's when I realized how amazing my friends are. They stood up for me and held secret meetings with res life ("I didn't want you to be there," one of them said, "because I wanted to get really, truly mad. I wanted justice.").

People say they don't know how I do it, how I live life with CP on top of all of these challenges. But the truth is, I don't know if I could do it without my CP. My CP has shown me that I have inner strength, abilities that transcend my limitations. My CP has shown me that even when I think I can't, I can.  
We all can.

Sometimes it's frustrating, to be sure. When I'm sitting in the lobby outside my classroom long after class has ended and the janitor smiles at me.....
            "You tired?" he says.
            "Yes," I say. "It's been a long week. And you?"
            "Well. Yes," he says, as he moves a table. "I'm tired. But I have an excuse. I'm old. You...you're young."
I stare, and for a fleeting moment, I want to stand so he can see the way my knees buckle from under me, the burden that is invisible when I'm sitting.
But his eyes are kind, so I smile in spite of myself.

And then just when I think that I'm going to break, a stranger stops me on my way back from class.
            "Hey," she calls. "Are you okay?"
            Is it that obvious? Is it that obvious that I'm having a rough day? Please God, tell me I don't have ketchup in my hair or toilet paper hanging off my shoe, because that would just be the Icing. On. The. Cake.
            "Yes?" I say, and it's more of a question as I check my shoe.
            "Oh, okay," she says, her smile innocent, her voice light and unflustered. "It's just...the way you walk is so interesting!"
            I thank her and as I continue on my way, I can't stop laughing. She made my CP sound like a choice, a fashion statement, a trend that hadn't quite gone out of style. 

It was just what I needed to keep on keeping on.

Tuesday, September 9, 2014

Guest Posting for Sisterwives: Capable (Thank you, Lizzi!!)

I don't remember exactly when I met Lizzi, but I'm so, so glad that she's a part of my life. She blogs over at Considerings, and one of my favorite parts of our friendship is that we come from such different places, literally and figuratively. Her perspective on the world is absolutely beautiful, you guys, and if you've had the pleasure of reading her blog, I'm sure you know what I mean. She has been there for me when I've needed her the most, and her words have brought me to tears more times than I can count. She's one of those rare individuals who has been endowed with not only kindness, wisdom, and grace, but also amazing writing skills, so she conveys her experiences with breathtaking clarity. I'm hoping and praying that she writes a book someday, and if she does, I'll be one of the first in line to read it!

And today, she's given me the privilege of submitting a piece for her beautiful collaboration project called Sisterwives. I'd be honored if you'd take the time to read it here. :-)

Monday, September 8, 2014

That Moment When You Can't Breathe and Campus Safety Thinks You're a Pothead

I feel like crying right now. I had an entirely different post planned but then THIS happened and I just need to write about it.

I was already having a bit of a rough day with regards to my breathing. I had started to cough and get some chest tightness in class today, and I waited it out. 10 minutes left in class, I thought. I can make it 10 minutes. 

And I did. But after class, when I reached for my inhaler, I realized that the albuterol canister had fallen out, rendering it useless. I sat on a bench coughing my lungs out and rummaging through my bag, and finally I found it and I was fine.

For the rest of the day, I was still having some trouble...nothing I couldn't handle, though, just some coughing and wheezing, and I went to dinner as usual.

After dinner, I got back to my room and started to work on some chemistry homework, and that's when things got bad. All of a sudden, I felt like I couldn't breathe, and my inhaler wasn't helping. I was trying to keep my nerves in check, trying to keep the panic at bay, because panic makes it worse.

I need to leave. I need to get out of here. I can't breathe, was all I could think. I stumbled toward the EXIT door and sat on the steps outside my dorm, hoping some fresh air would help. It did, a little, but I was sitting there for maybe thirty minutes, and my breathing still sounded pretty bad.

I don't know who, but someone who was concerned must have called Campus Safety, because at one point, I looked up and saw an officer shining his flashlight in my face.

"What are you doing?" he said. WHAT DOES IT LOOK LIKE I'M DOING? I'M TRYING TO BREATHE. I didn't answer because I was coughing; I just held up my inhaler.

Then another officer came up beside him and they looked at each other and LAUGHED. The two officers exchanged glances, and then the first one looked at me and said — I kid you not — "My God, you sound awful. You been marathoning?" [For those who don't know, this is another way of asking if I spent the entire evening smoking marijuana.] 

I shook my head, all the while in disbelief.

"You sure? You sound pretty bad," the other one said, and they laughed again

As soon as I could get out the words, I told them that the pot smokers were the bane of my existence. I didn't know what had triggered this episode, I said, but oftentimes it's pot smoke. And just like that, their demeanor changed. They wanted me to go to the hospital. (I find this in itself kind of disturbing— my health wasn't much of a concern until they ascertained that I hadn't been doing drugs.) 

I didn't want to go, though — I have a nebulizer in my room, which is what they would have given me at the ER anyway. I managed to explain this, and they understood. After about fifteen minutes and a couple more puffs of my inhaler, I felt okay enough to stand and to walk back to my room for the breathing treatment. They came with me, and that's when we smelled it: pot smoke everywhere

I think that the officers thought that I was trying to cover for my neighbor, but I honestly wasn't aware of the trigger when I left. All I knew was that I couldn't breathe...I didn't stop to think why. Apparently, my asthma reacted before I could tell that it was there, and in the thirty or forty minutes that I was outside, the smoke had filled the entire hallway. In fact, it STILL smells like marijuana, three hours later. 

Everything about this evening just irks me. Why do I have to be met with suspicion when I'm having trouble breathing? Why do I have to be blamed for something that isn't my fault at all? And why do I have to feel unsafe in my own living environment?

I feel one hundred times better after the nebulizer treatment, but it keeps me wide awake and makes me shake for hours. My CP already makes the muscles in my legs kind of "twitchy," but after the breathing treatment, they shake even more, to the point where it's difficult to move. 

/rant over. I'm beyond thankful that I can breathe again, but I wish it didn't have to be like this. I hate fearing for my safety. I hate that I had to convince those officers that it wasn't me who was smoking.

I just wish people could learn some respect.

Wednesday, September 3, 2014

Guidance in the Darkness



There is one moment from this past weekend that has refused to leave me. 

At around 8 p.m. on Sunday night, we decided to have a bonfire on the beach. My brothers, a couple of their college friends, a few of my cousins, and I sat in a circle and watched the flames dance and throw their sparks. Our voices mingled with the sound of the waves and the night seemed to draw on forever. 

And then it started to rain. Just a sprinkling at first, and then harder and faster. The flames were extinguished and we were left in pitch blackness, laughing as we fumbled for the stairs in the dark. 

My cousins and my brother's friends sprinted up the winding, rickety wooden staircase that leads from the beach to my uncle's house. I began my ascent alone, feeling for the steps in the darkness, praying that I wouldn't fall.

That's when I felt a hand close around my wrist.  
"You didn't honestly think we'd leave you here, did you?" 

I turned toward the sound of my brother's voice and saw his outline standing beside me.

"Thank you," I said. 

"Not a problem," came another voice. A few steps ahead of me, there was the click of a flashlight, and my other brother stood illuminated. 

I stood in shock for a moment—this brother has Aspergers, and he doesn't always pick up on cues—but really, I shouldn't have been surprised. When it comes to my CP, he seems to understand intuitively when I need help. 

The three of us ascended the stairs together, with one of my brothers at my side, holding my wrist to keep me from falling and the other in front of me, shining his flashlight on each of the steps.

Moments like these show me that I am not alone, that sometimes—even when I'm not expecting it—there will be someone at my side to keep me from falling and someone to light my way in the darkness.