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. :-)

Thursday, August 14, 2014

As Long As It's Healthy

"Are you hoping for a boy or girl?"

It's a question that people often ask expectant parents, and it seems that the parents almost always respond with something along the lines of, "We'll love the baby either way, as long as it's healthy."

I realize that this response isn't meant as a jab toward people with illnesses or disabilities, and it's perfectly natural and more than okay that parents would hope for their baby to be healthy. After all, nobody wishes for their son or daughter to suffer. I get that, I really do.

At the same time, I wish that people would think about the implications of their words. As a child, I remember hearing people say that seemingly-innocuous phrase, and it hurt.  

They won't love their baby if it is born like me, I remember thinking to myself.

I heard them say "As long as it's healthy" to my mom, and I heard, "As long as it's not like your daughter. As long as it doesn't have to go for hospital visits and physical therapy appointments; as long as it doesn't have brain damage. As long as it doesn't walk funny."

It was more than clear to me that my parents loved me with everything they had, but hearing these words from other people was damaging and confusing. I felt as if I had done something wrong by simply existing, as if these people didn't care that I loved to make my brothers laugh and that I wanted to be a ballerina and that I was always careful not to eat all of the marshmallows out of the Lucky Charms box. None of that mattered because I had spent the first two months of my life in the NICU fighting to breathe and unable to eat, and then my parents found out that I had cerebral palsy. If I were their child, they wouldn't love me.

On a related note, my mom and I were watching the "update" episode of Kate Plus 8 on TV a few weeks ago, and at the end of the show, Kate remarked that her sextuplets deserved their birthday party because it was a celebration that they were all born healthy.

"That's not a fair thing to say," my mom said, "because she's implying that if her children weren't born healthy, then they wouldn't have deserved that celebration."

All children, healthy or not, are worth loving and celebrating. Just because a child isn't "healthy" doesn't mean that he or she isn't living an amazing life full of joy and fulfillment. I just wish parents would take a moment to think before they speak, to take a look at the seven-year-old girl nearby who might be struggling to stand, a girl who might hear "As long as it's healthy" and misinterpret their words:

"As long as it's not you."

Thursday, August 7, 2014

Feeling Crushed

My cat has been missing since Monday. My dad says things like, "It's just a cat," and "I don't understand why you're upset...you knew he was going to go someday!" and "Just forget about it! You make it sound like he was part of the family!" and I don't know if he just doesn't care or if he's trying to make me feel better, but if it's the latter, it's not helping. At all.

I just want permission to be sad, permission to pull the covers over my head and cry. I miss him. Maybe he's "just a cat," but I miss the way he'd cuddle into lap and drape his body over my chest. I miss his meowing, even if it was at 3am sometimes, and the way that he'd climb into the laps of all the visitors at our house and purr as if he'd never met a stranger. I miss the way he'd get down on his tummy and search for the toy mice that may have slipped under the bookcase or the oven. I even miss his quirky nature, the way he'd hiss and chase his tail unless it was bandaged, and it used to drive us crazy but--what I wouldn't give to hear that again!  I miss him.

This morning I awoke with a gasp because there was a bird chirping outside and for one moment, for one amazing moment, it sounded almost like him, and my heart leapt at the thought of him at the door. With each day that passes, I lose more and more hope that he'll return, and every time I think about him, I can't help but wonder if he's hungry, or tired, or lonely and scared. I wonder if he's still out there somewhere, and if a fox or a fisher cat got to him, I wonder if he suffered.

Because to me, he's not just a cat, and no matter what my dad says, he is a part of our family, and has been for the ten years he's been with us. I love him, and I just want him back. :(

Monday, July 28, 2014


Today I was given the privilege of guest-posting for Kerri over at Undiagnosed But Okay.

When I started my blog nearly two years ago, Kerri was the first person to leave a comment. I didn't see it until days later, though, because the Blogger filter interpreted it as spam. I guess that Blogger assumed that my blog wouldn't get any comments, and I was equally surprised to find that someone had taken the time to readand comment on (!!!)my words.

Needless to say, it made my day. Kerri and her words have always been there for me when I needed them the most.

If you haven't had the pleasure of reading her blog yet, you've been missing out! She and her family are beyond amazing. In March, she started an incredible program at her older daughter's school to foster understanding and acceptance of people with disabilities. And then—just when you thought that a person couldn't possibly be any more awesomeshe started "What's Your Challenge?", a series of guest posts that show us that, disability or not, we all have struggles in life.

Anyway, my words could never do her justice, so head on over to her blog and see for yourself! You can read my guest post here, and don't forget to check out the rest of her posts as well!