Sunday, July 24, 2016

Like Looking in a Mirror, Part 2

It is beyond special to be able to spend time with "your people."  Whomever they are, it's a rare gift to be in the same space in a given moment.  To be able to feel unselfconscious about walking or crawling, about being in your chair, or out of your chair.  About being.

Perhaps, you remember back in December, that I posted for the first time about the novelty of this.  That it was like looking in a mirror to see my own features, hallmarks of CP, reflected back in the face of a young friend.

Tonight, they came back.

{Image is: My little friend and me, from behind, enjoying some poetry together.}

As with many things, it's not what we do that matters, just that we are together while doing it.  A highlight for me, this time, was sharing a favorite book from my childhood (Shel Silverstein's Where The Sidewalk Ends) and reading it aloud together.  Laughing and talking about the pictures, and repeated words and phrases.  About how we want to always make sure to take the garbage out, thanks to Sara Cynthia Sylvia Stout, who never took it out.  (The stench caused her neighbors to move away.)

We watched movies and TV.  There was coloring and piano-playing and exclaiming over the accessible shower, the kitchen, the apartment in general.  We wished they could stay longer.  (Read: forever.)

Oh, we wished.

But for a few hours we got the magic of these moments to hold close to us.  For a few hours, it was okay to say "My leg really hurts."  It was okay to crawl.  To get down on the floor.  To grab a chair for balance because you do "Whatever you have to do to survive."

Community is so important.  If you are lucky enough to have it close by, don't take it for granted.  It is the most precious thing to feel unencumbered.  To feel free just to be.  To offer suggestions, solutions.  To say, "Me, too."

Me, too, I used to sit just like that.

Me, too, I have balance issues.

I fall, too.

But also...

I love poetry, too.

I love being together.

I love just being with you.

I love being however I am, and knowing that's okay.


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  1. I love everything about this post, Tonia.

    From the very first paragraph, I found myself thinking YESYESYES -- my friendships with you and Tara (and others with CP, either online or in-person) have shown me that same's like a huge weight has been lifted off your shoulders, isn't it?

    I read your post voraciously, savoring every word - and ohhhh how I love that photo! I can't even put my feelings into words, but somehow knowing the context of the photo and knowing your stories gives it depth in the most amazing way.

    I LOVE that you guys felt okay to be YOU and to bear all of your "CPisms" without feeling self-conscious. I wish it could be that way /all/ the time, but I get it completely. I love that you referred to these moments with your friend as "magic" - that's the perfect word for it.

    Being with your people....with OUR's something that defies description. To be able to say "me, too...I understand" -- that's such a powerful thing.

    I wish so badly that *I* could have been there too (CP^4) - but most of all, this post makes me feel lighter inside. I LOVE that she has you guys, especially at such a young age - what an AMAZING thing to have mentors with CP. And I love that I have you, too, and that you have us. You have changed her life, and you have changed mine too.

    Lovelovelovelove times a million. I wrote in the comments that your last post was one of my favorites ever - well, this one is one of my favorites, too. My heart is so happy right now :)))

  2. K,

    It is so very freeing to be able to exist around people who are like us <3

    I honestly did not know my sis even took that picture but I'm so glad she did. She has a knack for catching these totally great, candid moments. It has been a dream of mine for a few years to be able to be a mentor / role model etc to someone younger with CP, so this picture really encapsulates that for me. Plus, it's just really nice to connect.

    Those magic moments are rare enough in my life to be called magic. Summer camp as a teenager. Meeting this friend. I mean, I can count them on one hand. (And this is specific to being able to share actual, physical space with people who are similar, which is really amazing.

    We wish you could have been there, too, so much. It would have been perfect (CP^4). YOU have changed our lives, too, don't forget that.

    I'm so glad this post makes you so happy. It made ME happy to write :D

  3. The feeling of connection and community with others that with CP that you described here is pure magic, just as you stated. I'm a young adult with mild hemiplegia CP, and I rarely meet others with the same type, but when I do, we're instantly connected. I had one of those unexpected "connection" moments with another individual with CP at a conference, and we could have spoken for hours. I was at immediate ease around her to be myself, even though I normally try to hide the signs of CP. The way I felt afterwards was an indescribable, giddy happiness. Thank you for bringing these issues to light and for showing people with CP that we're never as alone as we feel.

    1. Hi Anonymous, I'm so glad to hear from you. I know the feeling you describe so well. My sis has the same type of CP as you! It can be very hard and isolating to not feel like we have community. But that is a big part of the reason why I blog, and why my blog exists. I want it to be a place where people like us can come and read posts and know they are not as alone as they feel. I'm so glad you got to connect with someone else with CP like you have. It is so affirming and freeing and beyond words, isn't it? <3