Friday, February 12, 2016

I Spoke. People Listened.

When I came to college four years ago, I could barely write about my CP, and yet here I was this past Tuesday, standing at a podium speaking about it to an auditorium full of my classmates. My heart was beating wildly and my words perhaps weren't as graceful as they could have been, but I did it.

When I started this blog back in October of my freshman year of college, I don't think I could have dreamed up a universe, parallel or otherwise, in which I could speak about my disability in front of a crowd of people who were (mostly) strangers. That, to me, was unthinkable, and yet, this week, I did it (no diversions needed!).

And I think what has been most surprising and gratifying about this whole experience is just how many people seemed to appreciate it. So many people came up to me afterward, or caught me on my way to class in the next few days, and said that it meant a lot to them that I shared, that it touched them in some way. 

My presentation wasn't perfect by any stretch of the imagination. I'm sure I sounded nervous, I know I stumbled over some of my words, and the entire presentation was only about fifteen minutes (and about half of it was about some scientific articles rather than my own experiences).  Even so, this small feat feels like a huge victory to me. I'm proud that I was able to stand up there and speak about what I've been through, and I don't think it's something that I could have done without this blog and without all of your comments and encouragements over the years. You all have taught me that my experiences are nothing to be ashamed of, and that who I am, what I've been through - it matters, and it can be used to make the world a more beautiful place.

This blog has literally helped me to find my voice. 

Friday, February 5, 2016

Speaking (OUT LOUD) about CP???

Hi again!!

The spring term (and final semester of undergrad?!!) started on the 24th and I've been so busy that I haven't thought to post until now.

My birthday was on the 20th (while I was still home) so we went to my brothers' college and had dinner at a pizza restaurant. It was a fun time, and it was awesome to see my brothers again.

But then, last weekend, my sweet college friends threw me a surprise party! I had no idea and thought we were just on the way to dinner as usual, and then they threw a birthday sash around me and led me to our common room, which they had decked out with balloons and streamers. I was so touched that I just about cried!!! We spent the night eating pizza and cupcakes and playing games, and then we went out to see a horror movie (have I mentioned that I'm a horror movie fan?! A lot of people are surprised by that!).

I think part of the reason I haven't posted in the last few weeks is because, despite my last post (which was kind of heavy), I haven't thought about CP too much lately. Sometimes I forget about it completely for a while...it's always there, and like all of us, I have tough days sometimes, but this is my "normal" and I am happy.

I've been thinking about it more in the past few days, though, because I'm taking a seminar course about neurological diseases, and my professor said that he'd like me to share with the class about my CP. I'm giving a presentation about ischemia (i.e., reduced bloodflow to the brain; stroke) on Tuesday and since my CP was caused by a hypoxic-ischemic injury, it's conceivably relevant to my presentation topic. My first thought at this request was "NOPE." I'm comfortable writing about my disability now and was more than fine to share with my classmates via that medium, but thinking back, I don't think I've EVER spoken aloud about my CP in detail to anyone, not even my own family. My family didn't like to talk about it, and I think they preferred that I didn't bring it up to others, because they didn't want it to be an emphasis in my life. I understand that. I understand what they faced when I was younger, with teachers assuming that I was incapable before they even got to know me. There's a certain stigma to "brain damage." I feel as though I can write about my experiences so easily, especially to you guys because you "get" it...but speaking about it to a roomful of people, many of whom I barely know....that's intimidating. I don't think I've ever spoken the words "cerebral palsy" aloud before. I don't know if the words will make it out of my mouth. I'm not ashamed of my disability, but it still feels like a "forbidden" topic of conversation.

And yet. I told him I would. I told him I'd speak to an auditorium full of my classmates about cerebral palsy. About me, my life, the neurobiology underlying my condition. I don't know how it will go. I'm terrified that I'm going to get up there and the words aren't going to come, or that I'll get nervous and it will seem as though I'm ashamed, and that's the exact opposite message I want to send. But if it goes well, I think it might help my classmates understand about disability. That's what I want. Understanding. Compassion.

I sent a text to one of my best friends about it. She's in the class with me, and she "gets" me kind of like you guys do, even though I don't even think she knows that I have CP (like I said, I never talk about it, and it's obvious from the way I walk that I have a disability, but I've never gone into details with anybody before).

Whatever you decide to do, I will support you, she wrote. Whatever you have, know that it doesn't define you...it's just something that happened to you, and I see it as just one part of what makes you amazing. And if, midway through, you feel awkward about talking about it, just give me a signal and I will leap across the row of desks and cause a diversion for you. ;) 

I couldn't help but smile. :)