Monday, August 26, 2013

Sometimes I Feel Inauthentic...

Let me start by saying that it is such a privilege to blog for you guys and I am so flattered that anyone even thinks that what I have to write is worth reading. Because, well, time is a finite thing and to think that you guys are willing to spend a few minutes reading my blog...that is so humbling, friends. So, so humbling. I want to reach out to each and every one of my readers and say thank you from the bottom of my heart.

But sometimes I feel that this blog only shows a tiny little part of who I am as a person. Most of this post is stream-of-consciousness, but when I write other pieces, I tend to read them over, edit, cut things, add things...and the result is still something from my heart, but dare I say that it's an idealized part of me?

Everything that I write on here is true and I try to be as authentic as possible, but for better or for worse, I am so much more than this blog. Most of these posts are about cerebral palsy or disability in general, about dealing with medical-y stuff and and coping with/embracing a part of myself that many people might consider to be a flaw or a tragedy. And I love that. I love sharing a part of myself that I sometimes feel the need to hide or guard when I'm not around people who "get" me. I am passionate about disability and treating others with the kindness and respect that they deserve regardless of special needs.

But I don't want to mislead anyone. In many ways I am just a teenager. I act ridiculous with my friends...we throw glitter at each other, laugh ourselves breathless, and make macaroni and cheese that has waaay too much cheese...we write poetry at midnight on a Saturday and romanticize goldfish and celebrate Christmas in July. Sometimes I argue with my parents and brothers about stupid things, sometimes I slam my door and sometimes I whine about my life and sometimes I wish I didn't have cerebral palsy at all. And for the purposes of full disclosure, it is 1:00 in the morning as I am writing this post, and my mom asked me to go to bed at a decent hour...but then the words started tumbling out and so there you have it: Simply by writing this post, I am disobeying a direct order from my mom.

And I feel like the people I know outside of blogging see one side of me, and you guys, my see another side. Both sides are a part of who I am, but I guess I just want to remind you that that other side exists. Cerebral palsy has very much shaped me as a person, but most of my friends from outside of the blogging world (I'm hesitant to refer to these people as "real life" friends because I think of this as real life too) don't really think about me in terms of my disability. Last year, for instance, my roommate said that she'd sort of forgotten about my cerebral palsy, even though it's obvious from my gait.

It's not something that I will ever forget about, this condition that is both a blessing and a curse. And I will continue to blog because I love this amazing community of people who understand. I love feeling that I can make a difference in my readers' lives, even if my words help only one person. Reaching out to others with my words is a privilege.

But behind this blog, I am a person. I have flaws and quirks and I am far from perfect. Sometimes I am confused and lost and anxious and unsure. Sometimes I watch cat videos in my pajamas all day.

And in the children's hospital that I spent so many hours at, there's this giant wishing fountain. Every now and then I would tug on my mom's arm and ask her for a penny so that I could make a wish. There were so many coins in that fountain, and sometimes I cry when I think about the parents whose children were fighting for their many coins in that fountain were from those parents? How many parents tossed pennies, nickels, dimes, quarters into that fountain and wished for their children to survive another day? Meanwhile, ladies and gentlemen, I wished for ice cream.

So you see, though I am trying to be the best person that I can be, I still have much to learn. Luckily for me, I can't think of a better classroom than life itself. So here's to imperfection! (Maybe I won't even edit this post!)

Wednesday, August 21, 2013

"Us" versus "Them" Mentality

First, I'd like to apologize for being MIA! College starts up again for me on August 27th, so I've been busy with friends, school stuff, and soaking up the last days of summer. Now on to the post...this is something that has bothered me for a while...


"You don't look SPED," some people say, referring to the fact that my cerebral palsy isn't immediately evident when I'm not standing or walking.

Is that supposed to be a compliment? Since when is "SPED" a word, and since when is it okay to call anyone that?

It bothers me to death that many people, especially those who are around my age, have that "us" versus "them" mentality. They're terrified of risking their popularity by associating with people who have special needs.

I saw this mentality in the hallways at my high school. Someone with special needs would wave or smile at another student, and that student would duck her head down, pretending not to notice. How difficult is it to wave back, people? If being popular means that I have to treat others as though they're less than human beings, I'd rather be unpopular any day.

I saw it in the classroom, when the teacher asked students to get into groups, and the kid with autism was left without a group. I leaned over and invited him into mine, but what struck me the most was the body language of the other students in the class. Their backs and faces were turned away from him, almost as if they were making an effort not to acknowledge his presence.

I saw it at a dinner party, when no one bothered to strike up a conversation with a girl who had Down Syndrome. I spent the next three hours talking to her about her life, and all I can say is that their judgment was their loss entirely. They missed an opportunity to talk to a girl who is so, so much more than Down Syndrome. She is a basketball player and a college student, she loves to spend time with her boyfriend, and she has an awesome sense of humor. Together we discussed our favorite movies and TV shows, reminisced about high school, and laughed about the stark differences in our sixteenth birthdays (I spent mine studying for a biology exam...she spent hers with her friends in a limo!). In short, if people had thrown away their prejudices and spent just ten minutes to get to know her, they would have realized that she isn't so different after all.


And I saw this "us" versus "them" mentality again recently. Someone was talking about a mother and her child, a boy with a cognitive disability.

He was referring to the boy as his mother's pet.

"So the lady's pet starting crying, and...," he said, laughing to himself. That's when I stopped listening.

"Her what? Did you just call that boy her pet?" I cut in. The words tumbled out before I could even think about what I was saying. Because that hurt. Perhaps if it had been a stranger, I could have written it off as ignorance...cruel ignorance, but still. It wouldn't have stung so badly.

But here was someone that I care about, insinuating that people with disabilities are somehow worth less than those without them.

"That's cruel," I said. "That boy is just as much of a human being as you are."

He looked at me in stunned silence for a moment, then nodded and apologized. Then he continued on describing his day. but I couldn't bring myself to focus on his words anymore.

What if you were that boy? I wanted to say. Would you value your own life less than those of other people? What if you desperately needed people to understand you, but you just couldn't get your tongue to form the words to explain your feelings? Before you deemed this boy as less than a human being, did you take a moment to look into his eyes? Did you see that he is a person too, a person whose spirit is perhaps a million times stronger than both yours and mine because of the challenges he must face every day to accomplish tasks that we take for granted?

And some of the passion that I have for this topic stems from my personal experiences. I know firsthand how much it hurts to be branded as "them." After they've seen me walk, some people won't speak to me or make eye contact. Others talk to me in a condescending way, using a cutesy voice as if I'm four years old instead of a teenager. By doing this, they're distancing themselves from me, trying to accentuate our differences and reinforcing that "us" versus "them" mentality. I used to let that make me feel inferior, until I realized that I am not at fault for their mentality.

People with disabilities, myself included, are not worth less than those without them. I am not less of a person because of my CP. We're all people, and we're all in this crazy, broken, awesome world together. "Us" versus "them" is an illusion. There is no "them."  

There is only "us."

Monday, August 12, 2013

The Day That Changed Everything: Part 4

By far one of the most difficult experiences of my life happened about five and a half years ago.

(Part 1, Part 2, Part 3)

As I stare at this blank page, I find myself grasping for the right words, but there really are no right words.

For most people, a broken leg is an inconvenience at worst, a few weeks in a cast and on crutches. But for me, there were no guarantees. For me, a broken leg meant that I might never walk on my own again. As I lay in bed, it occurred to me that everything I worked for, all of those hours of PT might amount to nothing, all because a nameless, faceless person decided to flip the spout on a water fountain.

I was out of school for the rest of that year, from December to June, because if somebody even bumped my leg the wrong way, it could implode. (And no, that's not an exaggeration. That was an actual warning from my orthopedic surgeon.) For three months, I wasn't allowed to bear any weight whatsoever in order to minimize that risk. So I hit the booksI basically taught myself for the remainder of eighth grade.

It wasn't all bad. My friends threw me a surprise party for my fourteenth birthday, and I learned how to get around without weight-bearing by propelling myself with my hands and using a computer chair with wheels.

But sometimes the unfairness of it all hit me like a ton of bricks. The well-meaning elderly people at my physical therapy appointments would sometimes smile at my physical therapist and ask, "What's wrong with her?" and my heart would sink. Because on one hand, I truly believed that nothing was wrong with me, that my challenges were making me stronger. But another part of me whispered, "Where do I even begin?" Do I start with the cerebral palsy or the broken leg that is breaking my life?

In mid-March, I was allowed to begin weight-bearing again, and that brought a whole new set of challenges. I literally had to relearn how to walk. Going from one end of the hallway to the other with a walker left me out of breath and sweaty, and it was slow and painful work, like running a marathon in slow motion. Each step required a tremendous amount of thought, and sometimes I just wanted to give up.

Here I was, at fourteen years old, and I was worse off than I was when I was three.

As my walking gradually progressed, I began using forearm crutches, but my gait was still slow and achy.

And I'll never forget my next doctors' appointment. My mom had asked my orthopedic surgeon what my outlook was like.

"She'll probably use the crutches for the rest of her life," he said casually—almost cheerfully, "and a wheelchair for long distances."

Just like that, my world came crashing down around me. For my entire life, I had fought against uncooperative legs to walk on my own, and here it was all being taken away from me in this doctors' office.

I could embrace cerebral palsy. I could embrace challenges. I could deal with the surgeries and the stares, the pity and the therapy appointments. But I couldn't accept the soul-crushing idea that the countless hours I spent strengthening my legs were a waste. I couldn't accept that everything I had worked for could be stolen from me by a puddle next to a water fountain.

No. I refused to accept that.

(to be continued)

Monday, August 5, 2013

The Gift of Disability

Sometimes when I tell people that my disability is a gift, they look at me with doubt written all across their faces, as if I'm either delusional or in denial.

I've noticed that people generally feel more comfortable defining situations as either black or white. And many individuals outside of the special needs community consider disabilities to be devastating tragediespitch black.

I want to stand on all of the rooftops in the world with a loudspeaker and contradict that notion with every fiber of my being.  

They're not.

Disabilities can be painful, and on the darkest days, they may seem unbearably challenging, but they're worth it. They're worth every tear, every fall, every ache.

At the end of the day, I couldn't care less about the handicap parking spaces that so many people joke about. And who cares that I'm allowed to be late to class when it rains or snows?

No. These "benefits" that people talk about, those mean nothing. Nothing.

Disabilities are beautiful not because of these petty "privileges," but because of the life lessons they impart. The challenges that send us to our knees and threaten to eat us up insidethese very challenges give way to strength, wisdom, and compassion.

And I would never trade that away. Disability has shaped me into the person I am today; it has given me a gift that I can take with me wherever I go.

Disability has shown me that the purest form of happiness is not our own, but that of others. When I was a toddler and still unable to walk on my own, simply watching my brothers chase each other would cause me to shriek with laughter. Their happiness was my happiness. I have found that the same is true in the broader context of life; the greatest joys come from helping others and watching the people we love enjoy the amazing adventure of life.

Disability has shown me patience. People in today's world are so preoccupied with speed and timelines, milestones and deadlines, efficiency and shortcuts. But my cerebral palsy has taught me that life isn't about who is the fastest. The people who rush to complete tasks and who are preoccupied with deadlines and milestones often miss the beauty that comes with fighting for something every. single. day, and they take everyday miracles for granted.

Disability has shown me perseverance. I have learned that diagnoses mean only so much, and disabilities are less about what we can't accomplish and more about what we can accomplish. My cerebral palsy has taught me that perseverance is a magic of its own. With determination, we can often transcend not only doctors' expectations but also our own.

Disability has shown me acceptance. Some people look at my crooked legs and see only brokenness in my clumsy steps...but in truth, I am so much more than my body, and so are you, disability or not. It seems that some individuals look at those with disabilities and consider them to be helpless, pitiable, and inadequate. This couldn't be farther from the truth. People with disabilities have personalities, quirks, talents, hopes, and dreams just like everybody else, and we, too, are capable of changing the world for the better.

I am thankful, so thankful, for the perspective that disability has brought to my life. Where others see a rainstorm, I see a rainbow. Not misfortune, not a limitation, not a tragedy.  

A gift.

Saturday, August 3, 2013

To My Readers

Every time I sit down to write this post, it seems that the English language fails me. There are no words to convey the gratitude that I feel towards my readers. "Thank you" just doesn't seem to be enough...

My favorite thing about my readers is this: You "get" it. Whether you are an individual with a disability, a parent of a child with special needs, or simply a compassionate person, you understand that disability doesn't equal tragedy. You aren't like the woman who said she was sorry that I was born with CP, who said that she doesn't know how I get through the day with a smile on my face. Because you know that I have an abundance of reasons to smile. And if you or your child has special needs, you know that you do too.

my readersare one of the many reasons that I smile when I wake up in the morning. For eighteen years, I was uncomfortable talking about my disability. Oftentimes, when I brought it up as a child, those around meespecially adults, such as teachersseemed to shut down. I sensed their trepidation and deduced at a young age that disability is seen by many as a "taboo" topic, something to be spoken about in whispers or behind closed doors.

So I kept silent.

But you, my readers, you embrace disability. You understand that it is not something to be ashamed of or hidden away. For the first time in my life, I am comfortable discussing the challenges and blessings that I face as a result of my cerebral palsy, thanks to you.

I owe so much to my readers, each and every one of them. To Kristi, who showed me Our Land and inspires me every day to be a better person. To Kerri, who was the very first person to comment on my blog, and who continues to warm my heart with her support. To Bron, who consistently leaves encouraging comments on my blog that move me to tears, including one that completely turned a difficult day into a wonderful one. To Tatum, whose recent response to my post was so beautiful that I was at a loss for words. To Tracey, whose kindness and beautiful way with words inspired me to start a blog. To Lizzi, who constantly offers wisdom in response to my posts. To Jacquelyn and Claire, who show me that I'm not alone and never was. And to anyone and everyone who has ever taken the time to leave a comment...because your words mean more to me than you could ever know.

You have changed my life. Thank you.