Tuesday, October 29, 2013

The Secret

Sometimes I feel like everyone else is in on some secret that I never got to hear. I watch small children jump and run with blissful ease, their limber bodies receiving perfect instructions from their brains, tiny whispers that never even register in their ears.

I remember telling a small boy once that I have trouble walking because my legs don't receive the right instructions.
"Well, can I teach you?" he asked with gentle innocence. "I know how."

Sometimes I wish it was that easy. Sometimes I wish I could just learn, that someone would just let me in on this secret.

And I've tried. I've tried to "just learn." One time I came from school and stood in front of a mirror. I figured that if I could teach my brain how to spell words and add numbers and find places on a map, then I could teach my legs how to walk normally. But the image I had in my head didn't match the reflection in the mirror. I knew exactly how my legs were supposed to move...I could visualize the steps and replicate them perfectly in my mind, but my legs failed me.

When I look down at my legs as I walk, they don't look different to me. This is my normal.

But when I look in the mirror, I see the clumsiness. I see knees that bend and knock together, and uneven, awkward steps. I look away.


"Stop knocking your knees together when you walk," my mom said.
I can't, I said. I can't. 
"Yes you can. It's easy. Just turn your knees out and don't let them touch."
I can't. I'm trying, but I can't.
"Like this," she said.
 I'm trying. 
"It's not hard! Just push your knees out!"
 When I try, nothing happens.

Frustration. Tears. She didn't understand what I was saying, didn't understand why my knees wouldn't cooperate. I didn't understand either, didn't understand why it was all supposed to be easy but it wasn't easy, wasn't easy at all.

That's the most frustrating feeling in the world, when I'm trying to do something and I hate my legs for not being able to do it, hate that willpower isn't always enough.

And yet there is also something so poetic, so beautiful about having a disability...shortly before I was due to head off to college, I was working in the gym with a personal trainer. We'd been working together for years, and she is amazing. For months and months I had been trying to push my knees outward...she would press her hand against my leg and hold it out, but as soon as she'd let go, my leg would collapse right back to the center no matter how hard I concentrated.

And then one day when she let go, my leg stayed in place. It didn't collapse.

The two of us stared in shocked silence for a moment before she spoke, wiping tears from her eyes.  

"You did it."

As I've developed this blog, I've come to realize that much of my life is about finding beauty in the brokenness...and there is so much beauty to be found, so much grace that comes from my ungraceful legs. I will never have a flawless gait, will never have perfect steps, but not knowing this "secret" has taught me so much...cerebral palsy can be frustrating and demoralizing and crushing, but it is also an amazing source of inspiration that I can draw upon, something that has shown me that, above all, my abilities far outnumber my disabilities.

Wednesday, October 16, 2013

Tears in a Bowl of Cereal

I feel like I owe my wonderful readers an update, but my life has been consumed by schoolwork lately and I just don't have time to gather my thoughts enough to write something coherent! Today was just one of those days where my alarm clock went off at 7:12 and I laid in bed wondering if there was a way to pause time so I could go back to sleep....sigh.

And then, on the way to class, my foot caught a rough patch on the pavement and down I went, heavy backpack and all. I pulled myself up and continued on my way...luckily I just got a little bit of a scraped elbow...I was bitter about it for a moment, but then I just thought about what I've been through, about what could have happened, and by the time I sat down for class, I was grateful. Because I remembered. I remembered what it was like to fall and to be unable to get back up...

{stream of consciousness post today}

 When I was fourteen years old I cried over a bowl of cereal.
Had a stranger walked into the room at that moment,
perhaps he would have judged me...
but he wouldn't have known about my broken leg 
that was so much more than a broken leg.
It was a broken leg that threatened to steal away my independence,
a broken leg that turned every step into a mountain climb
of pain and tears and I don't know if I can do this...
a broken leg that became, "you might never walk independently again."
Fifteen minutes.
It took fifteen minutes to carry that bowl across the kitchen,
hands shaking and droplets of milk spilling onto the floor,
legs threatening to give out,
and maybe if a stranger had walked into the room,
he would have laughed,
laughed at the fourteen-year-old girl and her shaking bowl of cereal.

But to me, it was so much more than that,
so much more than a shaking bowl of cereal.
It was proof,
proof that maybe, just maybe,
I could transcend my cerebral palsy,
and maybe everything wouldn't be fixed,
but I could live with the brokenness,
the beautiful brokenness
that ended with a fourteen-year-old girl
crying tears of joy
over a bowl of cereal.

Thursday, October 10, 2013


"You always have a smile on your face," she said.
Thank you. I have so much to smile about, I replied.
"That's the spirit," she said as she met my gaze, but there was sadness in her eyes.

 I don't quite understand why so many people assume that I must be bitter about life. I am thankful every day for the amazing opportunities that I have been blessed with.
A few months ago, someone posted something as a Facebook status that has been haunting me.
"People say that everything happens for a reason. HA. Ask a paraplegic person and I bet they won't agree."

Maybe, I wanted to say. But how do you know? Regardless of your own beliefs, this implies that you believe that nothing good can come from that disability. I don't have a problem with people who believe in pure coincidences. I do have a problem, however, with those who think that no one could possibly be grateful for life's challenges, those who assume that, unequivocally, no one with a significant physical disability would ever believe that everything happens for a reason.

Regardless of whether my cerebral palsy happened "for a reason," I really do have so much to be grateful for.

It feels strange that I'll never meet them, these people who allowed me to experience the world. I wouldn't recognize their faces in a crowd, the faces of the doctors and nurses who kept me alive. Do they have families, children of their own? How many other lives have they saved?

These doctors, these nurses, these individuals who worked tirelessly to develop lifesaving medical technology...they're heroes. They gave me a gift that I can never fully reciprocate, a gift far too precious to be boxed up and tied with a ribbon. They gave me the gift of life. Without medical intervention, I probably wouldn't be here.

I would never have experienced sunshine streaming through the window in the morning, a gentle spring breeze, a crackling fire. I wouldn't know what it is like to be covered in sloppy dog kisses, or to be cozy in bed on a chilly autumn's morning.

I inhale and fill my lungs with oxygen, fill my lungs with gratitude for the surfactant and all of the medical equipment that sustained my life even when I couldn't breathe on my own.

I unwrap a piece of chocolate, savor the sweetness as it melts on my tongue. The chocolate melts, but the gratitude does not...there's another kind of sweetness deep inside me as I think of the feeding tube that nourished me when I was unable to eat due to digestive issues.

I am so overwhelmingly grateful to have been given this amazing gift of life. I am so glad that I have the opportunity to interact with such incredible individuals, both outside and within the blogosphere. The world really is a beautiful place.

I have so much to smile about.

Friday, October 4, 2013


This post was something I wrote a while ago, but I've been so busy lately that I haven't had time to sit down and write something new this week!

The blood gushes down my ankle and I can't get it to stop and my thoughts are the color of panic and humiliation and oh God make it stop...please, please, please make it stop.

"I'm sorry," I murmur to my friend who is sitting across from me with concern painted all over her face. And it sucks because today we were just supposed to have sundaes and talk about life and relax before the start of another school week.

"Don't apologize," she says as she passes me another napkin to blot the cut on my leg. "Are you sure you're okay?"

And then I have to explain about the sort-of-not-really hemophilia, the mild factor deficiency in my blood that is so, so easy to forget about, until....until a simple cut that I received hours and hours before suddenly starts bleeding again, all over the floor of the dining hall and I'm trying to hold a normal conversation but for the love of God I just can't because I'm trying to stop the blood from ruining my sock, my shoe, the dining hall floor.

I'm bent to one side as I press the napkin against my leg and my ice cream is a melted mess just like this mess of a day and I'm not even hungry anymore because in that moment all I want is a normal life, a life where I can run with my friends without battling stiffness and balance issues, a life where I can eat an ice cream sundae without worrying about a clot breaking and bleeding everywhere. 

"I think I'm fine now," I say after holding the napkin to my leg for what seems like an eternity. I stand up and then, after about twenty steps, I realize that it's started again, a steady stream of blood dripping down my leg.

"Maybe we should get help," my friend suggests nervously, as I sigh and lean down to press another napkin to my leg. "Do you want me to get help?"

No no no no no. The last thing I need is an audience. I shake my head and try to laugh it off, but I can't stop yearning for normalcy.

As I sit on a bench with the napkin pressed against my leg, I murmur in a moment of weakness, "I hate this. I hate that my life has to be like this."

I guess we all have those moments where we're on the verge of tears, trying desperately to staunch the bleeding that just won't stop and wishing that somehow things could be easier. In my case, this moment was quite literal, but if there's one thing I am consistently learning through this blog, it is that I am not alone.

We all bleed.