Tuesday, October 25, 2016

FOUR YEARS

Four years. 

Four years ago today I was sitting on my bed in my freshman year dorm room when I hit "Publish" on my very first blog post. I then proceeded immediately to the "settings" of my blog and set everything to "Private" so that only I could read what I had written, which completely defeats the purpose of writing a blog.

I was scared. I wasn't sure how to share my story, or where to begin, or if anybody would even want to read what I had written.

But when I gathered the courage to set my blog to "public" again, people actually started reading what I was writing, and it seemed like it mattered to them. So I kept at it...I kept writing, kept sharing, kept connecting.

When I started this blog, there was a part of me that was afraid I was giving permission for my CP to overshadow the rest of my life. You see, cerebral palsy is something I rarely discuss outside of this space, outside of this community. I've never wanted to be known as "that girl with a disability" or "that girl who walks funny," and while CP is a beautiful, wonderful part of my identity, I want people to see me as so much more than that.

Looking back, I realize that my worries were unfounded. Blogging about my CP hasn't allowed it to take over my life, but my blog has given CP a space within my life. For the first time, I feel as though I have a safe place to acknowledge my cerebral palsy and all of the "extras" that come along with it (including, but not limited to, startle reflex, wrecked shoes, surgeries, and mini heart attacks whenever I spot a curb). I don't have to hide that part of me anymore. And having this space has given me the courage and confidence to be more open about my CP in the "outside" world, too -- even knowing that "the real world" might not be as supportive and understanding as my blog readers.

Above all, I want to thank you guys -- my readers -- whether you've been part of this journey for all four years or whether you've just found my blog, I want you to know that I appreciate you so, so much. My favorite part of blogging is that it has given me the opportunity to form connections beyond what I ever thought possible...friendships that are every bit as deep and complex and beautiful as the friendships I have forged in person. Many of you have reached out to tell me that this blog has helped you feel less alone, and hearing that fills me with warmth beyond words. Know that YOU have helped me, too -- just by listening, just by being here, whether we've written novel-length emails back and forth or whether you prefer to read without commenting.

Thank you...thank you for showing me that I am not alone in this, and for being here to encourage me through the hard days and rejoice with me through the wonderful days. This blog has become more than I ever imagined it would, and it has been an honor and a privilege to share my journey with you! Here's to another four years of blogging and connecting and togetherness in this crazy adventure of life. <3

If you'd like to reach out at anytime, please don't hesitate to do so: transcendingcp@gmail.com

LOVE YOU ALL!

Monday, October 17, 2016

When they ask you the question you aren't sure you're strong enough to answer

I started a job as a physical therapy aide with one of my former PTs (I was her patient from age nine to fifteen). It's a way for me to obtain the experience hours that I need in order to apply for graduate school in the field of healthcare, and it's a strictly part-time thing a couple times a week for now. I'm still testing the waters to see if it will work out...but day one is in the books and it went pretty well, so I am hopeful.

But there was ONE moment, and I should have seen it coming. I was talking with a patient, somebody I had met before outside of the clinic but hadn't gotten to know well.

The PT commented that I was familiar with a lot of the exercises that he was doing and I agreed.

"Yep, I've done that one, like, eighty billion times," I said.

"My hips are like the hips of a one-hundred-year-old," he said.
"Oh I think I've got you beat!" I laughed.
He laughed too. Then silence. Then...


"So.......what is...what is the problem that you had?" 

His voice was measured, cautious, politely curious.

It was then that I realized...I am not allowed to ask the patients direct questions about their medical conditions, but that protection is unidirectional.

They can ask me all they want. 

And here's the thing: 
I still can't say the words 'cerebral palsy.'

I took a deep breath, silently summoning all of the courage I could manage, trying to keep the panic from edging into my voice, trying trying trying to pretend that this question didn't make me want to crawl under the exam table.

"Oh, I...I have CP, so PT has been pretty much a lifelong thing for me," I said.

He smiled. "Ahh, ok!"

I think he was politely feigning understanding, because "CP" isn't exactly a well-known acronym, but somehow it's a million times easier than "cerebral palsy," and at this point in my life, those two letters are the best I can do.

During our lunch break, the PT pulled me aside.

"Somebody is coming after lunch, and he is probably going to ask you questions...personal questions. Please know that you don't have to answer anything he asks you."

"It's fine," I said, in spite of myself. "I can answer questions."

"No, I need to protect you," she said.

I see the way they stare at me. I see them wondering, and some of them will never dare to voice their questions, but some of them will. She can't protect me forever. She can't protect me from the world, can't protect me from cerebral palsy. I certainly don't feel obligated to answer anything invasive, but at the same time, I don't feel as though I should hide this part of myself, least of all in a physical therapy clinic, where my CP might help somebody feel just a little bit less alone.

Sometimes it's hard...sometimes it's crushing, lonely, seemingly unbearable. Sometimes it's painful...physically, emotionally, mentally, everything. But mostly...mostly it's just a part of who I am, a beautiful, irreplaceable part of what makes me ME.

Somehow, I need to find the strength within me to say those words out loudwithout shame, without panic, without hesitance.

I have cerebral palsy.
_________________

Edited to add: This is off-topic to the post above, but I collaborated with my friends Tonia and Tara to put together a CP Survival Guide: a non-sponsored post in which we recommended some of our favorite products to make living with CP a little bit easier. :) Check it out here!