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

MY CHALLENGE

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!

Sunday, July 20, 2014

Pennies and Cups, Highways, Pride, and Asking for Help


I'll admit: sometimes I relish those few moments when I first meet someone new. If I'm sitting, they can't tell that I have CP. Every now and then, they'll ask me if I'm on any sports teams, which catches me completely off guard because anyone who knows me would know not to ask that question, but to be honest? It feels good. Normal. 

"Nope," I say. "Sports aren't really my thing!" 
               
And then—when I stand, their eyes flash to my stiff legs and I can tell they regret asking that question. I've always kind of wondered why they had that "deer in headlights" look in their eyes, but even I'm uncomfortable with my disability sometimes...and if I'm not comfortable with it, how can I expect them to feel at ease?

I've been trying to rid myself of the embarrassment, but it often creeps up when I least expect it. 

At the beginning of last semester, for example, I had to schedule a last-minute meeting with a professor. Her office is a little bit off-campus, so in the past, we've agreed to meet in an area that was more easily accessible for me. I felt really awkward asking for that accommodation, though—at the end of our first meeting, she said something along the lines of, "You should really come to my office sometime...it's pretty cozy!" and stupid me, I thought she was hinting that it was too much trouble for her to meet me somewhere else, when she was probably just trying to be friendly. So this time, I didn't mention anything at all about meeting her somewhere else...we set up a time through email and I said I'd be there.  

I was aware of her office's general location. I was not aware, however, that getting there required walking down a steep, icy hill, across a busy highway, down a set of cement steps, and up three flights of a very narrow, rickety staircase. 
 
Do you know that sinking feeling you get when you're halfway into something and it suddenly occurs to you that it was a stupid idea? You guys, I pressed the pedestrian button to cross the highway, but it changed before I was all the way across. Please don't kill me, please don't kill me, please don't kill me. (Spoiler alert: I lived.) Thirty minutes later, I finally found myself standing in my professor's doorway, and when she saw me, her expression was one of shock.

"How did you get here?" she asked."Ohmygosh I didn't realize it was you who'd scheduled a meeting...why didn't you ask me to meet you on campus? I can't believe you walked all the way here, the day after a snowstorm." And then, after our meeting, she called over her shoulder: "Please be careful walking back! Some kids got hit a few years ago crossing the highway even after they pressed the pedestrian button." You don't say?!
 
After that experience, I realized that I probably should have just womanned up and asked her to meet me on campus. It's not worth risking my life and well-being for the sake of my pride.
                
But this wasn't an isolated event...oftentimes I find myself unreasonably uncomfortable about situations that arise as a result of my disability, and I'm not quite sure why.

A few months later, my best friend and I were in our psychology class, and we had to perform a simple experiment on each other. One of us—the experimenter—would have to hold a penny about a foot above a plastic cup and move it back and forth, left to right so that it passed over the cup every few seconds. The other—the test subject—would try to get the penny to land in the cup by telling the experimenter to drop it at the appropriate time. The test subject would perform this first with both eyes open and then with one eye covered.

This task was supposed to test depth perception.
               
"Would you like to be the experimenter or the test subject?" my friend asked.
               
Instantly, I felt the warmth flood to my face. "I, um...I don't have good depth perception." As a result of my CP, my brain can't process depth very well and my eyes don't work together as they should. People are usually surprised when they discover this fact about me, as I manage pretty well. I scan surfaces for shadows (depth cues) and discretely slide my heel against steps to test their steepness. So it's usually something that I forget about because I can judge depth pretty well from other cues; I can walk up and down stairs with relative ease, and I can drive a car, although parking took some extra practice. But in this experiment, there were no objects nearby for comparison, and there were no shadows.

"Oh, okay! I guess you'll have to be the experimenter, then!" my friend said, completely unfazed.
                 
I cringe just thinking about this, but as we soon found out, even being the experimenter required some degree of depth perception; the cup was in the middle of the table, and for the life of me I couldn't figure out how to position the penny over it.
               
I must have looked so freaking ridiculous...I mean, who can't position a penny over a cup and oscillate it in a straight line?!
                
I was mortified.
                
"Don't apologize," my friend said. "It's no big deal."

I'm not going to say that her words made me get over all of my self-conscious feelings about my disability, because that would be a lie. There are times that I still feel uncomfortable about the situations that my CP gets me into, and I'm sure that will always be the case to some degree. But she's right—there's no need for me to feel embarrassed about what I'm not able to do. I'm guessing that's the first and only time I'll ever have to swing a penny over a plastic cup, and in the grand scheme of life, this is no big deal. After all, my lack of depth perception doesn't mean that I lack depth as a person.

I feel as though I'm coming to terms with my disability more and more as I get older, and I owe much of that to the blogosphere, to the people who have shown me that we are more than the sum of our challenges. Ultimately, I'm realizing that it's okay to ask for help, that I don't have to take on the world by myself. I still feel awkward asking, though—I can't help but think that I'm inconveniencing people. 

Do you guys ever feel that way when you ask for help? Do you ever find yourself embarrassed by situations caused by circumstances beyond your control? I'd love to hear what you think in the comments!

Wednesday, July 9, 2014

Not Alone


I wonder if we get to decide whether we want to be here. I heard someone speculate once that only the bravest souls are here, that most people decide to stay up in heaven and watch, as spectators to this crazy world of ours. (Not sure how true that is....sometimes I'm afraid to look out the window at night for fear that an ax-murderer will be staring back at me! ;-) )

I wonder if we know about the pain that we will inevitably encounter while we're here...if not our own pain, someone else's. 

I wonder if God, if there is someone "in charge," justifies it. "It won't be so bad because you won't be alone. You'll all be in this together."

Or maybe, like my mom believes, we experience pain in order to grow. Maybe everyone comes here with a challenge, or two, or sixty, or a million. 

My mom, who is a teacher in more than one sense of the word, told me a story a few weeks ago. She was making Mother's Day presents with her students when she noticed that one little girl, Abby, was sobbing. 

"I don't have a mom," she said.

My mom knelt by her desk. "I know," she said. "But you live with your grandmother, right? You can give her something for Mother's Day." Then she paused. "We all come here with challenges. My daughter has cerebral palsy, which means that she didn't get enough oxygen, and now it's hard for her to move her legs. She used to cry sometimes, too, because she wasn't able to do everything that the other kids could do, but I always told her that her disability was her challenge in life. And this is yours."

That's all it took for her tears to stop and a smile to spread across her face—a simple affirmation that she wasn't alone.  

Monday, June 16, 2014

In which I eat six pints of ice cream, do math for fun, and reunite with an inanimate object


Wow, it's been a while. I guess I kind of took an unannounced break from blogging. It's been such a relaxing month...At the end of the semester, I had $35 left to spend of campus center money, and it would have disappeared if I didn't use it....so I bought six pints of Ben and Jerry's and gave a seventh pint to the man who was working there. Probably the best use of $35 ever! 

I know I write a lot about disability here, but there's another side of my life too, a side that is remarkably ordinary! I tend not to write about it here because I don't know if anyone would care to read about it, but in case you're interested...

 I've had a lot of movie nights with my friends, and I rediscovered the magic of a library so I have been spending a ridiculous amount of time catching up on books. One of my friends has been begging me to read the Divergent series for a while, and I was a little hesitant because I don't usually read young adult novels, but I decided to give these books a try, and they've been taking over my life in the way that only a book can!

Along with reading, I've been doing some more writing! My writing professor extended the deadline for our essays, so I seized the opportunity to work on another one, and it's CP-related, so I'm toying with the idea of posting it here for you guys to read as well! 

I've been playing a lot of piano, too...I missed my piano at school, so it was an awesome reunion. I've resurrected a lot of my older pieces--pretty sure my family is tired of hearing Fur Elise, though they're too nice to admit it!

I've also started going to the gym again! Maybe that makes up for the six pints of ice cream...I've been so excited because my legs actually have been getting sore after my workouts!!! Most people probably wouldn't see this as a cause for celebration, but since I was a child, my therapists have been trying to get me to feel my legs after exercise...finallyfinallyfinally. I seriously almost cried!
And I've been tutoring like crazy—sometimes it seems like every weeknight! I was pleasantly surprised to find that I still remember most of eighth-grade math, even though I was homebound for most of eighth-grade.

Tutoring someone in math is one thing, but I seriously began to question my sanity when I found myself doing math for fun. I don't even like math, but one of my friends likes making secret codes for me to solve and she sent me one with math terms! I wasn't even going to do it, but my curiosity got the best of me, and I caved!
Somehow this was fun??

I also shadowed a school-based speech therapist and an occupational therapist the other day...what an awesome experience! I'm not sure what I want to do with my life yet, but I can definitely see myself working in one of those areas. I feel as though I understand a lot of those kids because I've dealt with a lot of challenges of my own! The kids were awesome...and I guess I attract the younger men ;-) because one of the kindergartners made me a painting and kept telling me that I was beautiful. Melted my heart! (:
The best cupcake on the face of the universe. 

Oh -- and I had the best cupcake on the face of the universe! I swear I eat more than just cupcakes and ice cream...I also started making some really good smoothies (strawberries, Greek yogurt, and oatmeal), but let's be honest..... they just don't compare to cupcakes and ice cream! I brought a cupcake home for my mom too, since we've unanimously agreed that they are the best cupcakes ever! I've included a picture for your viewing pleasure...mine was chocolate sea-salt caramel, and my friend's was banana Nutella!

That's it for now! I hope you didn't mind that this post was a little bit all over the place, and I can't wait to catch up on reading your blogs! I hope to post more regularly this summer because I've missed you guys! xoxo