Thursday, July 25, 2013

The Pain of Disability

One of the hardest things about having a disability isn't the pain that I myself have to endure...it is knowing that I have caused others pain.

Once I overheard my mother sobbing into the phone, "It's not fair....she can't even run." Her tone was wounded, unfamiliar to me, and the pain in her voice was like a slap to the face. I went up to my room and cried into my pillow, wishing that I could somehow take the hurt away. I learned at a young age that not everything can be healed with a pink Barbie Band-Aid.

In another instance, she let slip that there was a time when doctors warned her and my dad that I might not make it. The wounded tone was back. There is an emptiness inside of me every time I think about that, about not being able to experience this world and the incredible gift of life, but even more unimaginable is the anguish of losing a child. It hurts to know that my parents had to face that possibility.

And then there were the countless times that I buried my face in my hands and begged my mom to keep the nurses from poking me with needles, begged her to protect me from the doctors who wanted to cut me open. She put on a brave face    a much braver face than me    but I know that she must have felt so powerless. As a child, I didn't always understand...she was my mother, she was supposed to protect me from pain, she was supposed to fix everything! As she looked into my pleading eyes and squeezed my hand, I know now that she probably felt more pain than I did.

And when the other parents talk about their children being on sports teams, sometimes I feel guilty because I know that this must hurt for my mom and dad. It must be difficult for my mom to drive me to physical therapy appointments while my friends are pulling on cleats and rushing to their sports practices. And sometimes, I hear the echo of my dad's proud announcement to the video camera nineteen years ago that "someday she'll be the captain of the field hockey team."

I think back to all of the times I came to my mom in tears, saying, "It's not fair!" Often, she'd remind me that life isn't fair. I know now that this response was meant as much for herself as it was for me.

Sometimes the pain that hurts the most is the pain felt by those around us. Something that my mom always used to say to me during medical procedures comes to mind: I wish I could switch places with you and take the pain for you. As I'm writing this post, I find myself wishing that I could switch places with my mom, too...but not because I want her to take my pain away; rather, I wish that I could ease some of the pain that she must feel.

But by focusing on all of the pain, I suppose I am forgetting the joy. I am forgetting about the time my mom said that sometimes I am more like a sister than a daughter to her because of the connection we have, because of the way we share advice, laugh together, and talk about life. By focusing on her tears of despair, I am forgetting about the tears of joy in her eyes when I rode a bike for the first time, a moment with so much more significance because of my disability. I am forgetting about the pride in my dad's eyes as I showed him my report card.

I am forgetting that in life, pain is unavoidable, but so is joy. Through the gift of life, we have the incredible opportunity to to leave the world more beautiful than it was when we arrived.

My goal for life is simple. I hope that by the time I leave this world, I can say that I have brought more joy than pain to the people around me. 

Wednesday, July 24, 2013

Guest Posts! :-)

Tracey Trousdell over at Trousdell Five has allowed me the honor of posting a guest post (here) on her blog!

I'm trying to contain my excitement, but I discovered her blog early on and it inspired me to start my own, so I was beyond flattered when she asked me if I could write a post for her.

Tracey is an incredibly talented writer with an amazing family, and two of her children have cerebral palsy. Even if you don't read my guest post, you should definitely check out what she has to say...she has a wonderful way with words, a fantastic perspective on life, and did I mention that her family is awesome? :-)

~

I also wrote a guest post for another amazing blogger, Kristi, at Finding Ninee. This one was written for her Our Land series, a set of posts inspired by our dreams for a world built upon kindness and empathy. My post was published about two weeks ago, so I'm a little late -- okay, really late -- in mentioning it now, but I didn't have Internet access when it was first put up. Better late than never, right?

You can find that post here, and don't forget to check out the rest of Finding Ninee as well!

Friday, July 19, 2013

Complicated?

I sat in the common room with a math textbook and a notebook cradled in my lap. It was a few weeks before Christmas, and some of my friends and I had gathered to study cram for an upcoming math exam.

I had just realized that we had incorrectly worked out one of the problems due to a tiny oversight, a small but important detail that we had overlooked.

 I scribbled out the numbers in my notebook with a flourish, and said (laughing),"God, why does everything have to be so freaking complicated?! Why can't something be easy for once in my life?"

Most of my friends detected my ironic tone, and in part because we were slightly delirious from the rigors of exam week, we laughed ourselves breathless.

But then I saw it. The pity face. One of my friends was watching me carefully, and there was cautious concern in her eyes. I knew she was wondering whether there was some truth beneath my sarcasm.

Was there? I think so. Sometimes I wish that my life wasn't so complicated. Sometimes I wish I didn't have to bother becoming an expert on the locations of flattened curbs. Sometimes I wish I could keep up with my friends easily. Sometimes I wish they wouldn't have to rearrange their plans for me. I know there are probably activities that they wanted to put on our summer bucket list that they omitted for my sake, because they knew that I wouldn't be able to do them.

And this sounds ridiculous, but sometimes I wish I didn't have to ask other people for help. Does anyone else feel that way? There have been times when I have had to ask somebody if they could offer me a hand so I could safely walk up cement steps, for example, and I find myself wishing that I could disappear.

Yet, at the same time, these worries seem so inconsequential when they're written out like this, stream-of-consciousness style... I find myself thinking, Seriously? You're complaining because you have to look for flattened curbs? You're complaining because you have to ask people for help sometimes?

So I guess it comes down to this: Yes, there are moments when I wish that my life was easier...but in the grand scheme of things, my life isn't so complicated after all.

Tuesday, July 2, 2013

Who Are We Without Our Experiences?

My dad came home the other day and told me about a woman who works at the gym in his workplace, how she has a prosthetic leg.
"She kind of reminds me of you," he said.

~

Rewind a few months. I was cross-country skiing with my dad, struggling to keep my balance. We passed an older couple that wasn't particularly friendly a bit firm, even.

"You aren't allowed to go off the path," the woman said to us.
She was referencing the fact that my dad was standing in the fresh snow on the side of the trail, walking alongside me to keep me from falling.

I didn't tell her about my cerebral palsy, about how sometimes I can't get my legs to do what I want them to do.

That would be too many words, too much confusion.
"I'm sorry," I managed. "This is my first time."

"Just go up that hill there a few times," the man chimed in. "You'll get the hang of it soon."

I smiled at them, silently clutching an explanation of my situation. It's not worth explaining about cerebral palsy. Let them think that I can go up that hill, let them think that I won't have to practice for hours and hours to even begin to "get the hang of it."

But while my dad and I were practicing, that couple crossed paths with my mom and brothers, unbeknownst to us. They mentioned to my mom that they saw my dad and me....my mom asked them if I was having a hard time, and she told them that I have cerebral palsy.

Towards the end of our cross-country session, we ran into that couple again. They smiled, offered words of encouragement. You see, they had two grandchildren with cerebral palsy. They understood.

~

At a local grocery store, one of the shopping cart attendants is autistic. He has a muscular build, and is over six feet tall, so many customers are intimidated by him. They refuse to even look at him, and rush past nervously whenever he comes close.

Except my mother. She's a pretty soft-spoken person by nature, but she shows no reservations when she shouts his name across the parking lot and waves. He ambles over to chat, a smile spread across his face.

"It bothers me," she confided as we were driving home one day, "that people are so quick to judge him. They don't even give him a chance."

His physique may be imposing, but his soul is gentle. His voice is quiet and kind. He thirsts for friendship, and he has hopes and dreams just like the rest of the world; he wanted desperately to go to art school, but the admissions told him he wasn't good enough. If people took a moment to get to know him, if they even smiled in his general direction, they would realize that he is the antonym of threatening.

~

My mom came home the other day and said, "I helped a woman with multiple sclerosis with her errands today. She seemed surprised and relieved that I offered, but I couldn't bear the thought of her walking up those cement stairs and falling with her crutches."

Once, we saw this same woman taking a walk outside with her forearm crutches. Her steps were slow, laborious. A small hill was akin to a mountain.

We watched her for a moment, silently cheering her on, when my mom turned to me.
"You know what that's like."

I nodded. I knew only too well.

~

All of this leads me to wonder....who are we without our experiences?

If I was completely able-bodied, would the the woman with the prosthetic leg at the gym hold so much significance for my dad? What about the couple we saw skiing would they have understood my mother when she said that I had CP if they hadn't had two grandchildren with the same condition? Would my mom be so quick befriend the attendant with autism if she hadn't experienced, through me, the pain of being judged because of a disability? And the woman with MS would my mom have noticed her struggling with her crutches, would she have considered the dangers of a cement staircase if she hadn't had those exact same worries about me a few years ago?

For better or for worse, sometimes I feel like we view the world through disability-colored glasses.