Friday, April 17, 2015

About Me


I was born in 1981, the second-born in a set of identical twins.  We were born nine weeks premature at two pounds a piece.  I had heart surgery at three days old, as well as a feeding tube.  When I was three months old, my family took me home, but I was rushed back to the hospital when my airway started to close.  I had another surgery to put in my trach, which helped me breathe.  I was finally released from the hospital at nine months old.



At eighteen months old, I was diagnosed with Cerebral Palsy, which, for me, was the result of oxygen deprivation before or during birth,  My CP is called spastic diplegia.  It primarily affects my legs, making the muscles in them tight.  It also affects my balance, posture and coordination.  Growing up, I achieved most of the milestones other kids did, but I achieved them at a slower rate, and had five or six more surgeries by the time I was eleven years old.

I used several different mobility aids.  When I first started walking, through about age five or six, I used a reverse posture walker:


And at that point, I learned how to started learning how to use crutches.  It was scary, and I was often afraid of falling, but I always had people spotting me in those early days, to make sure I didn't fall.  (Thanks, Grandma!)



Despite being a really outgoing kid, I had a lot of internalized ableism.  I grew up thinking that being able meant you were also "better" and so, being disabled made me "worse."  I often asked for my picture to be taken like this because that's how everyone else had theirs taken, and I wanted nothing more than to fit in, even if it meant clutching an unsteady object nearby and being terrified I'd fall.


In fact, I have very few full body pictures, where my walker, crutches or wheelchair were visible.  Lots of them are close up, portrait style.  By the time I was ten or eleven years old, I was dealing with anxiety, depression and self harm (which, I have read, is common among people who have experienced multiple surgeries, and therefore, feel a lack of control over their own body.)  This picture was a rare exception, where both my crutches and my wheelchair were pictured, about six months after my most major surgery, with one more on the horizon.



I hadn't realized just how few pictures of myself also pictured what I used to get around, until I went looking for them for this post.  Needless to say, it's time for that to change:



This is me and my wheelchair, Greenie.  I use Greenie a lot of the time, because I live in accessible housing, and it's a lot easier to get places and also have my hands free to carry things.  Greenie is super reliable and very comfortable.  His special talents include killing bugs.  He also gives me a ridiculously smooth ride, a lovely seat cushion and supportive back rest.  His best feature is his candy apple green color.


And this is me with my crutches.  I use them anywhere I can't take Greenie (anywhere with stairs, that is otherwise inaccessible.)  Their best feature is their slip proof tips, which I find and buy on Amazon every year or so.

It has taken many years for me to come to terms with my status as a disabled person.  I still rarely wear shorts, because I don't like my surgical scars being visible (though the one from my trach usually is.)  And I rarely if ever discuss my history with anxiety, depression and self harm.  These days, my anxiety is mostly under control, depression thankfully has not been an issue since college, and I am twelve years strong in recovery from self harm.

This is me, and I am not ashamed:

10 comments:

  1. This is truly beautiful. I cried reading this. You are a wonderfully strong person and I am so glad to know you.

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    1. Thank you so much. I really appreciate that. And the feeling is mutual :)

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  2. Thanks for sharing your story, Tonia! I've known you a long time, but have never known your background of surgeries and all that comes with it. You are a rockstar!

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    1. Thanks for reading, Mary! It is kind of strange realizing that I am more nervous for the people who know me to read this stuff than I am for people who I know from afar.

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  3. Hi Tonia~ I found your blog via rampyourvoice.com 's post about the Liebster Award (I nominated Vilissa :D and was looking forward to reading her comments and her blog recommendations). I really like your site and learning about life with CP and about you in general. Also, the series on Grey's Anatomy means I have a totally valid excuse to rewatch lots of episodes. Yea! Congrats on the award :)

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    1. Hi Jodi, I'm so glad you found my blog! (I'm also glad you nominated Vilissa! She is awesome!) Yes, definitely always rewatch Grey's episodes - and know I'm ALWAYS up for discussing disability representation in the media. (Especially Grey's.) And I seriously had no idea I was nominated for anything - had no idea there was this kind of award! Thank you so much for letting me know!

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    1. Hi Vicky! Welcome! Thank you so much!

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  5. Hello, Tonia,

    I found your site via Stories with Sam. As I wrote in a comment to Sam's mother, I think it is extremely important for parents and others who have someone with CP in their lives to understand all they can, first about the condition, and then, about how it impacts living, choices and perceptions. Having had CP since birth and now aging with it, I have become very acquitted with inspiration porn and have had to work to shed my own internalized ableism. You have a wonderful blog and I am looking forward to reading more of it. Thanks!

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    1. Hi e,

      I'm so glad you found my blog! Thanks for reading. I look forward to hearing from you!

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