Monday, October 20, 2014

SLOW DOWN AND LISTEN!

Sometimes I just have to laugh about the absurdity of my life.

I've been almost nonstop sick since the beginning of September. It started with the smoke in my dorm that was making it hard for me to breathe...it seems like that's come to an end for now. But a week or so after that ended, I came down with a cold that went to my chest. And then -- two days after I got over that cold, I kid you not, I came down with yet another cold.

This cold has been pretty rough. A few days into it, I completely lost my voice. When my voice came back, I lost my hearing in one of my ears (it's coming back though, finally!).

I'm sure a lot of you guys can relate to this, but losing my voice was an eye-opening experience. I didn't realize how much I take speaking for granted until I wasn't able to do it.

Most people were extremely understanding...others, not so much. My chemistry recitation professor (side note: he's English, you guys, so he says things like "trolley" instead of "cart" and "marks" instead of "grade") -- well, he fell into the "not so much" category. In recitation, we have to answer questions in front of the class, and when I could barely whisper the answer, he leaned forward.

"Speak up," he said. "Can't you speak?"

Honestly? Not really. I tried again.

"I can't HEAR you. You're going to have to yell," he said.

I tried to explain about my voice, but it was no use. So I gave up. I fell silent. He turned away.

I'm not blaming my professor; he's usually a nice guy, and I'm sure he just didn't realize that I couldn't speak.

But that got me thinking about people for whom this isn't temporary. What about people with disabilities that make it difficult for them to articulate their thoughts? How many of them give up because other people turn away? How many of them cannot share their thoughts with the world because the world is unable -- or unwilling -- to slow down, to understand, to listen?

My voice came back, but some people always need to speak in different ways.  It might take an extra moment, a little more effort and concentration to understand them, but that doesn't make their words invalid; that doesn't mean that they're not worth hearing.

So here's my PSA to the world: SLOW DOWN AND LISTEN.

Tuesday, October 7, 2014

Step Aside...Or Not?

This morning, I read a beautiful post by Ellen over at LoveThatMax in which she outlined the various forms of confidence that she wishes for her son to have in himself.

I loved the whole thing, and her words stuck with me all morning. But there was one point in particular that I couldn't shake: "I want him to feel confident about moving at his pace," she wrote.

This is still a struggle for me. Every morning to get to my chemistry class, we have to descend a couple flights of stairs. Almost automatically, if I hear someone behind me, my legs stiffen up and I feel pressured to move more quickly...paradoxically, making an effort to move quickly worsens my spasticity and increases the likelihood that I'll stumble. And the whole time, I can't stop that little voice in the back of my head: "You're making them late...they're probably so annoyed with you right now...hurry, hurry hurry!"

If I can, I almost always step to the side to allow them to pass instead of making them follow behind at my slower pace. Usually people thank me, but the reactions vary...some people seem as though they feel awkward about it, murmuring a quiet "Excuse me!" as they move past. Recently, one girl passed me but then waited at the bottom of the stairs. "You didn't have to do that, you know," she said with a smile as I finished climbing the steps. "People don't mind waiting an extra minute."

Her gentle comment brought a smile to my face and certainly made me wonder. How much do people really mind?

I hear it all the time...Offhanded, innocent comments that even I can relate to sometimes, like, "I got stuck behind a slow person on my way to class, and it was so annoying because I was running late!"

Sometimes comments like these just roll right off me...after all, I get it. We live in a fast-paced world, and we've all experienced the pressure of being six minutes late to an appointment and seemingly hitting every. possible. roadblock. And yet, there are other times when I can't deny that it hurts.

During my freshman orientation, when I got stuck in the middle of the group and someone shouted, "Why are we going so SLOW?," it stung. Because to me, it didn't feel like "slow" at all...I was walking as fast as I possibly could, and I was painfully aware that even my best wasn't good enough.

Or when I expressed worries about not being able to keep up with a large group of people on a tour, and someone in my family said that if I went to the gym more often, I'd be just like everyone else. Those words still haunt me, especially because they came from someone I trust. They made me feel as if my CP and my slow pace were entirely my fault.

And yet, I know deep down that it's not my fault. Ever since I was a young child, I knew that it wasn't. For as long as I can remember, I've heard people huff impatiently as they waited for an older person to cross the street or get out of their way. I remember being a young kid and feeling a strange connection with these older people, and I always used to remind my family and friends that it was beyond these people's control, that it might be a small annoyance for you, but imagine how much more difficult it must be for them.

"You're right," my family and friends said. "I'm sorry." They seemed to understand that I was speaking from experience, that I knew firsthand the pain of being the "slow" person, the target of those impatient sighs.

Sometimes these sighs come before people realize that I have a disability. "What's taking so long?" they'll say as I take an extra moment to move. And then they'll notice my obvious disability and horrified comprehension will dawn on their faces. "I'm sorry...I didn't mean...." and their voices will trail off as we both try to pretend that nothing happened.

I guess my emotions are complicated when it comes to this topic. As of now, I think I'm still going to step aside on the stairs to allow people to pass me, but I'd love to hear other people's opinions. I'd love to become more comfortable about my walking pace, and more and more I'm realizing that it might not be as much of an inconvenience for others as I make it out to be -- several of my friends often ask to walk to class with me, sometimes even in the rain, and it never ceases to amaze me. And yet, when I tell them that they can go ahead without me, that they don't have to wait, they seem to regard me with amused confusion. "Why would I go without you?" they say.

Just the other day, I had swung my backpack over my shoulder and was heading out the door, when I heard a voice call out behind me.

"Hey, wait up! I want to walk with you."

I couldn't help but smile.

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.

Thursday, August 28, 2014

Sidewalks Are My Nemesis (and other news!)



Oops! I'm long overdue for an update! The latter part of summer was a mixed bag...

It was AWESOME to catch up with my high school friends...We had a sleepover and we stayed up until 6 AM (an excellent decision until about 6:30 PM the next day), made cookies (kinda...we tried to make them into shapes but some of them ended up looking like shapeless blobs), watched movies (FINDING NEMO!), played board games, and finished off the day by doing the ice bucket challenge out of support for one of our other friends whose dad has ALS. 

Then, as a family, we went up to our cabin in the mountains for a weekend of ATVing, canoeing, roasting marshmallows by the campfire, berry-picking, exploring the shops in the nearby port city, and reading books. It was an awesome getaway!

THEN (and here's where things get a little dicey!) ~ one of my dogs developed a lump on her head after our remaining cat hit her in the face. The first vet we brought her to thought nothing of it, but it continued to get worse until she could barely open her eye, so we brought her to a second vet. He identified it as an abscess because the cat must have had some bacteria on her claws when she scratched the dog. My poor dog had to have surgery on her head. :-( When we went back to the vet's to pick her up after the surgery, she was whimpering and crying, and she looked like Frankenstein. I'll spare you the gruesome details, but half of her head was shaved, and she had two holes in her head with a string coming out of them so that the abscess could continue to drain. 

A day later, on Thursday, I had to leave for college. It was hard to leave my poor dog, but on the bright side, my room looks awesome so far! I got tired of searching for posters, so I made my own with an image editing program. I was really happy about how they turned out, and I decided to make a few of them Harry Potter themed because I love Harry Potter. :-) (Honeydukes is the candy store in the Harry Potter series, in case—gasp!—you haven't read the books.) I even have a little reading nook where I can curl up with a book! The pictures don't do it justice, but I thought it'd be nice to offer a few visuals for a change!

My first couple days back have been pretty good so far, albeit exhausting!

Adjusting to the pace of school is hard for everyone, but is it fair to say that it's a bit harder when you've got CP? Yesterday, my friends stopped by my room and asked if I wanted to sit out on the grass with them—a fifteen minute walk. I hesitated—should I save my energy?—but they pressed a little and I decided to just go for it. They're very considerate in that they walk at my pace without comment and I'm glad I joined them! Sometimes, though, I wonder what it'd be like to not have to worry about something as simple as walking.

Tonight we had a picnic dinner to celebrate the start of classes, and to be honest, I was kind of dreading it. Last year's was awful—they hosted it almost off-campus, across tons of sidewalks, up hills, and down stairs without railings, and then they crowded us all together in a paved area to get our food. From there, we had to carry our food across MORE SIDEWALKS to find a place to sit. It was one of those situations where I didn't realize how bad it was until it was too late to turn back.

This year was infinitely better, but there were still a bunch of sidewalks! (RANDOM SIDE RANT...WHY DO RANDOM SIDEWALKS IN THE MIDDLE OF NOWHERE HAVE TO EXIST? I mean, I get why they're next to roads and all that, but SERIOUSLY, PEOPLE? WHAT IS THE POINT OF A RAISED PLATFORM OF GRASS? IT JUST COMPLICATES MY LIFE /rant over) Most people don't think twice about them, but to me they are so frustrating! If I concentrate and if they aren't too high, I can sometimes manage them, but oftentimes I just end up leaning down and climbing over them. It's awkward, but somehow asking for a hand would seem even more awkward...During times like these, I realize that I still have a way to go before I'm comfortable with my disability.

My reading nook!
And tomorrow, after my classes (organic chemistry—wish me luck!—and psychological disorders and dysfunctions), I'm leaving for Labor Day weekend, where we'll have our annual family gathering on an island on the Cape. I'm a little sad to leave my college friends already, even if I'll be back again in a few days. At the same time, if the weather comes through, it will be amazing to swim in the ocean and have a bonfire on the beach and catch up with family! 

Sorry for the stream-of-conscious update...there's just so much going on in my life that it's hard to put it all together! Hope all is well with you guys. :-)