About Me

778 words

6 minute read

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 five days old, as well as a feeding tube.  When I was four months old, my family took me home, but two weeks later, I was rushed back to the hospital when my airway started to close.  I had a two stage throat surgery to remove a mass that developed there due to intubation at birth, and to put in my trach, which helped me breathe.  I was finally released from the hospital at eleven months old.

[Image:  Tonia as a toddler, smiling in a blue robe, brushing her teeth]

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 affects the muscles in my legs, as well as my right arm and hand, 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 at age four, through about age nine, I used a reverse posture walker:

[Tara, left and Tonia, right.  Age 6.  Tonia is using her walker.]

At age 6, I 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.

[Image: Tonia around age 6, posed by a wall holding onto an unsteady object in cowboy boots, shorts and a tee shirt]

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.

[Tonia, age 10, petting a goat.  Seated in her first blue wheelchair.  Her crutches are hooked on the back.]

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:

[Tonia in 2015, seated in Greenie, wearing an orange top and black pants, smiling]

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.

[Tonia, in 2015, standing with her crutches]

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:

[Image: A close up on Tonia's face.  2015]

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