Thursday, January 23, 2014

No Longer a Teenager! & The Woes of Snow

My brothers and I turned twenty on Monday...I meant to write a post about it then, but I was a little bit too busy!

One of my college friends came to visit for the weekend, so that was pretty awesome, and then we all went to my brothers' college on Sunday afternoon (the day before our actual birthday, since I had to head back to school on Monday!) to go out to dinner and celebrate.

Nothing is quite so simple with my family...after dinner, we laid out the three birthday cakes and lit the candles, one of my brothers' roommates said, "The fire alarms are really sensitive in our you'd better blow out those candles now!"

Of course, one of my brothers couldn't think of a wish right away, and panic ensued! Luckily the fire alarm didn't go off...that would have made for an interesting story, though! ;-)

Otherwise, it was a wonderful birthday, and as an added bonus, I had a slice of leftover cake for breakfast yesterday. :-)

I've been back at college since Monday, and everything would be going smoothly if it wasn't for the snow! We don't have that much in comparison to other areas (maybe around six inches?), but it's definitely enough to complicate my life. I've had to call campus safety for rides around campus, which isn't something that I like to do, but I don't really have a choice.

Sometimes when I call to request a ride, they ask prying questions to make sure that I'm not an able-bodied student who's too lazy to walk to class...and while I understand why they have to do this, sometimes it makes me uncomfortable. They'll say something like, "Are you injured?" or "Are you on crutches?" and since the answer to both of those questions is technically no, I have to explain that I have CP and as a result I have balance issues. I don't mind answering questions, but it just gets a little tedious when it happens almost every single time.

And once, the campus safety officer driving me to class spent the entire ride explaining why I didn't need a ride!

"You could walk in this," he said. "I think you should try!"

I didn't argue with him, but it just sort of bothered me...I don't think people necessarily realize that if I slip and fall, it could permanently set me back. There are definitely some spots on campus where I technically could walk (and there are areas where it's physically impossible for me because of the ice and the depth of the snow), but I could fall in a split second and, as I learned six years ago the hard way, that could mean surgery and years of recovery.

And then last night, I called for a ride from my night class and they told me to wait outside. They forgot about me until I called again after a half an hour, so I was sitting outside in the cold for about forty-five minutes, until about 9:15 pm. I'm grateful that they offer a ride service because I would be unable to get to and from class in this weather without it, but it's definitely a hassle.

Not to mention that my room feels like an ice box right now! I noticed that there's mold in the heater vent in my room, which might have triggered all of the health issues that I had at the end of last semester, since my breathing problems started around the time that the heat turns on.When I woke up this morning, my room smelled all musty from the heat, so I've opened up a window to air it out...Hopefully the fresh air will help matters, but the trade-off is that I'm sitting here shivering!

Overall, though, things are going well, and I'm enjoying my classes so far! Thanks for stopping by!

Tuesday, January 14, 2014

The Dangers of the Food Network at 2 AM

It was 2 in the morning and I was still awake. I don't even have a good excuse, really. Sure, my sleep schedule got a little crazy really messed up from all of those nights I laid awake coughing...but since the medication has made my cough all but disappear, I should be back to sleeping like a normal person again, right? Right??

My partner in crime
Oops. So here I was, relaxing on the couch with one of my dogs lying bleary-eyed beside me, and the two of us were watching the Food Network on mute (what is my life? don't answer that). Turns out, the Food Network is still pretty entertaining even when it's on mute...and did I mention that it's just as dangerous? After about ten minutes I realized that I was craving ice cream. Really craving ice cream. And because I have no willpower because it's winter break I ate the last of the Ben & Jerry's straight from the carton. At 2 in the morning. Before you judge me, the dog helped!

After our little party, I glanced nervously at the time and realized that it was 2:30 AM...meaning that I had exactly thirty minutes before my dad's alarm clock would go off (he wakes up at 3:00 AM because he likes to read the paper before work...? Yeah, I'm still trying to figure that one out, too.).

The dog looked at the door and then glanced back at me hopefully, as if to say, "You know what would make this party really awesome?" I shook my head and gave her the firm "NO" expression that I have perfected ever since working with the kindergartners. NO, you are not going outside at 2:30 in the morning. And don't even think about barking and ruining this for the two of us, or you won't see your friends Ben & Jerry ever again. I think she understood, because after discarding the evidence, we were able to slip away to bed before anyone was the wiser.

I regret nothing.

Friday, January 10, 2014

A Language that Transcends Words

A woman approached me, wiping her eyes.
"Wow," was all she said.
I felt my mom's smiling gaze on my back.
"She wasn't expecting that. She saw the way you walked and didn't think you'd be any good."

I've been struggling to write this post for months. How do I write about something that resists translation? 

I started at the age of eight or nine with a silver keyboard in the front entryway. I began taking lessons from a good-natured, carefree guitar player who had also managed to teach himself the basics of piano. 

I still remember the cautious excitement in my chest as I carefully studied the pattern of white, black, white, black. I remember running my hand over the keys and thinking, Maybe this would be something that I could be good at...My legs were stiff and slow, but my hands moved just as well as anybody else's.

I started out by playing simple, one-handed melodies. I was no prodigy by any means, but I was determined. Eventually, the guitar teacher had exhausted his limited understanding of piano, so I resumed my study of piano with an older woman in my town whose musical knowledge was frighteningly expansive.

I took my lesson from her every Thursday before heading off to school, and I was intimidated by her at first. She was no-nonsense, dedicated, and "technique" was her middle name. Technique, technique, technique. What's more, she expected me to practice at least five times per week for thirty minutes each day. 

I didn't practice nearly as often as she had requested at first, but each week we grew closer, and I began to look forward to my lessons. 

On my tenth birthday, she motioned for me to sit next to her on the piano bench, and she played "Happy Birthday" for me. My heart danced. 

I remember, too, how sometimes her husband would whistle along to my melodies from the kitchen, to our profound amusement.


I don't play much in public (which frustrates my mom endlessly!), but when I do, people are surprised. They see my legs and somehow come to the conclusion that the girl with the crooked gait couldn't possibly play the piano. 

Once, in fifth grade music class, the teacher asked if anyone could play. I folded my hands in my lap, staying silent, until my brother nudged my shoulder, whispering for me to raise my hand. When I refused, he spoke up, pointing me out: "She does!"

So I went up in front of the class and played a piece. Afterwards, I felt a hand on my shoulder. It was the aide for my class.

"I had no idea you could play like that," she said. And from that day on, she treated me differently. It was almost as if she had finally realized that I was capable. 

And this was by no means an isolated experience. In tenth grade, I took an electronic music class, and we were assigned a project where we had to strip a movie clip of sound and create our own sound effects to accompany it. I recorded a melody on the piano for the background music, and when it was time to present our project, one of my classmates inquired as to where I got the music. 

Before I had time to respond, the teacher cut in: "They got it from a professional music site, so they'll get a few points off the rubric for that." 

My partner, trying not to laugh, corrected her: "Actually, K played it on the piano."

The teacher was shocked. Apparently it never occurred to her that the girl with cerebral palsy could play an instrument.


As I grew older, I cherished my piano lessons, a sanctuary from the world. For a little while each week, it was just my piano teacher and me, communicating in a language that was somehow more powerful than words.

And one day she turned to me and said that I'd grown up before her eyes... "Just yesterday, it seems you were nine years old, just a beginner, and now you're eighteen, playing Bach and Beethoven." 

I smiled, wishing I could put into words the amazing gift she had given me. I couldn't find the words, so I played, hoping that the musical notes would communicate what was beyond the scope of spoken language. 

Music has carried me where my legs could not.

Tuesday, January 7, 2014

Independence vs. Safety

Tonight I am so relieved to write that I am breathing a million times better. The medicine I'm taking didn't seem to have an effect at first, but apparently it takes a few days to kick in, and it's finally working! It essentially reduces the inflammation that occurs when I'm exposed to a trigger so that I can breathe more easily; I have to take it for a month, and then, as instructed by my doctor, I'll stop. If my symptoms have disappeared after a month, then it was probably just temporary viral-induced asthma that was causing me to have airway issues. If the coughing and breathing problems flare up again after I stop taking the medicine, then I likely have chronic asthma and I'll have to take the medicine long-term.

I really hope I don't have to deal with asthma on top of my cerebral palsy and bleeding disorder, but I'm trying not to worry about that possibility because there's nothing I can do about it.

 In the meantime, I've still been having a relaxing break! I finished all of my exams, so I've just been enjoying life...I went to the movies with some friends, did some baking with my mom (brownies!! and nothing exploded so I consider that a success), did some painting with my brothers and some friends (just in case I needed to be reminded why I'm not an art major), read some books (I lovelovelove losing myself in a good book!), and spent a couple days being supremely unproductive in my pajamas (every worthwhile vacation has to have at least one "pajama" day!). Tomorrow afternoon, I'm going to tutor "my" eighth-grader (I call her "mine" because I've tutored her in all of her school subjects since she was in the third grade! Just writing that makes me feel old...) in math and Spanish, and later this week, one of my college friends is coming to stay for a few days!

A couple weeks ago, a couple of my good friends decided to head to NYC for a day, and they really wanted me to join them. I decided to pass because...honestly? The thought of NYC terrifies me. I thought of the icy pavement, crowds, trains, buses, and all of the walking we'd have to do and because of my CP, I just didn't feel like it was a safe idea for me. I explained this to my friends and they understood completely, although I felt a little guilty at first for letting my CP hold me back.

This seems to be a common theme in my life lately...balancing independence with safety issues! Sometimes I feel like it's so hard to be a teenager with health issues in a world built for able-bodied people...I want to be like everyone else, carefree and limitless as I experience life, but that's just not my reality. I have to accept that I'll always have to worry about snowbanks, icy patches, curbs, accessibility, and railings when I'm out with my friends. And sometimes I'll have to swallow my pride and stop worrying about inconveniencing people because there are some situations that I can't safely handle alone. For the most part, I'm coming to terms with that.

Sometimes it's hard to be different in a crowd full of people who all seem to be the same. Sometimes it's hard to feel like I have limitations that my peers don't have. But ultimately these differences and limitations are just one part of who I am, and I know that I am a stronger person because of them.

Saturday, January 4, 2014

Breathless Sleep

Note: for the purposes of good communication, I want to mention before I begin that this is something I wrote a few days ago...I've been feeling much better lately. :)

In my dreams I am suffocating
Gasping for air, grasping for a lifeline,
something's crushing my chest, clutching at my breath,
and it seems the harder I fight,
the more it's kept from me. 

I open my eyes and the nightmare is real.
My bed feels like a prison cell, my sheets wound around me,
choking me.
As the coughing wracks my chest, I reach in the darkness,
feeling desperately for my inhaler.

My shaking fingers find it
and I hold it to my mouth, 
forcing the exhale so I can take a breath in...

And just like that,
the bitter mist reaches my lungs and 
I can breathe. I can breathe.

The light in the hall flickers on,
and it's my dad,
lingering in the doorway,

And then it's my mom,
her whisper floating across the air,
"I'm going to leave your door open."

I roll over, watch her. 
"No, leave it closed," I whisper back. 
"I don't want to wake you."

She replies that she wants to be awoken...
and I just barely catch the end of her sentence
as she walks back down the hallway,
her whispered voice breaking...
"I want to be sure you're not dying."

Her words clutch at my breath,
pull at my heart.

Halfway between sleep and wakefulness,
I hide my face from the darkness.
and with a deep, shuddering breath,
I settle back into sleep,
praying for a dream this time,
a dream instead of a nightmare.