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'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'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. :)


  1. Wow! So many things to comment on! First, happy birthday! Second, congrats on your last semester! Are you planning to go to grad school or job hunt? Third, how brave of you to add something so personal to your class presentation! Fourth, how awesome is your friend?!

    Ok I'll stop geeking out now. Thanks for letting us in on your life :)

    1. Hi Laura!! Aww, thank you for your sweet comments. I am definitely planning on grad school in the not-too-distant future (I'm thinking I want to be a PA?), but my immediate future plans are a little bit complicated because I'm not sure whether the summer and a few months post-summer will be consumed by medical "stuff" or not (as I talked about in my last post :)) And thank you - I don't FEEL very brave, because to be honest, I'm terrified! But we'll see how it goes. I'll be sure to let you guys know!

      And YES she is amazing. I am so thankful to have such supportive, kind people in my life.

      Thank you so much for taking the time to leave a comment! Reading comments from you guys is one of the most rewarding parts of having a blog.

  2. K, I relate to this so much, you have no idea! I would love to talk to you more (on Facebook or via email if you're comfortable.) The FB for my blog is linked at the bottom of my Place Blindness post (and all other 2016 posts.) Please come find me sometime. I'd love to talk to you and hopefully be friends <3

    1. <3 I am sososo excited to talk with you more, Tonia!

  3. What an awesome opportunity to be able to share your experiences with your classmates!

    My son suffered Hypoxic Ischemic Encephalopathy Grade 3 as a result of his traumatic birth. We have always been very open with him and others about his brain injury. He has a diagnosis of mild Dyskinetic CP. Last week was his 6th birthday.

    His friends at school all know that his legs (and arms) don't always work properly. I vividly remember watching the news when he was about 2, it was a story about a baby on life support. My husband commented to Isaac that he used to be really sick like that, but now he was all better. My son looked at him with a sad expression and said I'm not all better 'cos my legs don't work properly. That brought tears to my eyes and broke my heart.

    Thank you for sharing your journey, it gives me such confidence that my son will be able to achieve pretty much whatever he sets his mind to.

    1. Hi Tui,
      Thank you so much for your comment!

      I am so glad that you have been open with your son...his comment about his legs not working properly - be still my heart!!! It's tough at any age to be different, but I believe that too - that your son will thrive and achieve and be happy, especially with such supportive parents. xo

  4. Ohhh she's BRILLIANT! What a wonderfully supportive message. And she's right. CP is something which happened to you, and perhaps it's a filter you have to live through, which colours and clouds the aspects of your life in ways you'd prefer it didn't, yet its also coloured and clouded them in ways which have made you more compassionate, more empathetic, more determined, and more willing to take risks than perhaps you would have been otherwise. It's one of those awful, terrible things in life which forces your hand, and your response to that force, your attitude to it and what you do from THERE, is what determines the person you are, and how you'll manage in life.

    And YOU, are someone I'm proud to know, even in this World Between the Wires. Truly. I wish you all the luck with your talk, and I hope it goes better than you ever anticipate it could.

    1. Lizzi -
      I love your perspective on it! I think that so many experiences that we go through in life are like that - difficult and simultaneously beautiful with respect to how they shape us.

      I am proud to know YOU too. xoxo

    2. Bless your boots, K :) And look, YOU WENT AND DID IT! I hope it shapes your future for SO much the better, having spoken out loud and been HEARD. That's huge :)

  5. Happy happy birthday, sweet girl! I, for one, think it's wonderful that you're going to be speaking to your class. I think it will be good for them to have another reminder from a peer that we're all more alike than different and that some of us have things that happen to us that affect our abilities. You're going to ROCK that talk. Also I love that you have the kind of friend that I sill have from college - one willing to create a diversion for you if need be.

    1. Thank you, Kristi!!! Your encouragement means so, so much to me. And I'm glad that you have one of those friends from college as well (and love that you're still friends!! I hope I can say that someday as well!)!

      Thank you so much for stopping by to encourage me.

  6. That is awesome...I love your friends and their support.

    Just a thought, maybe your family didn't talk about your CP because they didn't want YOU to think that is all they saw and in truth they forgot. I forget all the time that Bridget is disabled. I know her sister does. It becomes a part of who she is, like her red hair, but not who she is (if you get what I mean).

    You are going to freaking rock the seminar. I look at your blog posts and see how far you have come. Let it give you the confidence to find your voice.

    And if that doesn't work, a friend jumping over bleachers is a nice back up

    Happy, happy birthday!!!

    1. Kerri -

      I love that thought. I think the "forbidden" nature of my disability is complex and multi-faceted, but I'm so glad you brought up this particular aspect of it, because I KNOW that they forgot sometimes as well. In fact, my mom recently said that to me - that she forgets all the time, and so does the rest of my family. She told me a story a few weeks ago about my cousin's birthday party when we were little...It was at a horseback riding place (somewhere in your neck of the woods!) and people kept asking my aunt about me and if they could help me. My aunt was confused by their questions until she remembered about my CP! ;) Apparently it had completely slipped her mind, not because it wasn't obviously visible or because she was being remiss, but because she just didn't think about me in terms of my disability.

      THANK YOU xoxoxo And thank you for helping me find my voice.


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