On Disability

Hi, everyone! 

I began this website, as mentioned, as a place to write about my experience living with a disability (vascular malformation – right leg) and how I navigate through it all, especially being a single mama. 

This is probably the most personal thing I’ll have up here; it’s also essential that it’s written early, as the rest of what I write on my blog from here on out will make sense after this. 

We all have different ways of framing our existences, whether we know it or not. A lot of our framework is created when we are children: how we grow up has a lasting influence on our future selves. 

I was born with what is called a vascular malformation in my right leg. It extends from my bum all the way down to my pinky toe. My whole leg is a tangle of overgrown veins. They grew into places they weren’t supposed to, causing damage and pain. 

When I was really young, before six years old, I did’t know the extent that this would affect me for the rest of my life. I was naive. So much so that one day, during P.E. in Grade 1, I was wearing shorts, sitting cross-legged, and looked at my right leg – my veins were gone! I remember grabbing my leg, in pure joy and happiness, and then realizing – the veins were on the other side of my leg. Once I uncrossed my legs and looked at the underside, there they all were: blue, big, bulging and painful. That memory is seared into my mind so distinctly, I refer to it as the defining moment of my disability. It was the day I realized I was trapped in my own body, a slave to its constraints. 

Fast forward to Grade 6, when I was eleven years old. I had major surgery that caused me to miss weeks and weeks of school. I had muscle removed, veins removed, and woke up to a robotic machine specially made for me to manipulate my leg back and forth, back and forth, bending it even as I slept. 

I had no idea I would come to like that, and it’s difficult to write to this day. It was traumatic, but there’s nothing that can be done about it now; I drank 10 years of my life away, trying to forget. 

So here, at 11 years old, in a hospital bed, so sick from surgery I could barely eat, my leg being forced to move, is where the framework begins. It is here, in the hospital bed, with this sore, weak leg, that I realize, finally, I am not like others, nor will I ever be. The doctors make it clear: this is not a cure, but something just to give a better quality of life. For a bit. If that. 

It is here, in this hospital bed, that other kids scream in terror when they see me, asking their moms, “What’s that?!” while pointing to my leg. 

It is here, in this hospital, that I learn how to use a wheelchair for the first time. 

It is here that I give up so many dreams kids shouldn’t be asked to give up. I can’t be a firefighter. I can’t be a cop. There’s no way I’ll ever be a ballerina or pro snowboarder. 

But, it was here, in this hospital, that I knew I could be a writer. 

For the rest of my life, the things I picked to do were framed by my disability. If it involved sports, you could count me out. I tried to dance, and was even a dance major at my school for Grades 9 and 10, but only because I so desperately wanted to prove that I could be normal. I didn’t belong there. I was no good, and the other girls let me know that. 

After the surgery, at 11 years old, I was forced to wear a cast on my whole leg, stick-straight, for many weeks after. 

It was here, lying in the couch, in the throes of boredom, that I developed trichotillomania. (I will be writing about this in an upcoming post.) 

It was here, lying in my bed, that I discovered that after my surgery my foot was so sensitive I couldn’t even have a sheet covering it, or else the pain was too intense to sleep. 

It was here that I learned how to be alone. 

But, it was here that I also learned how to love being alone. 

Life progressed after my life-altering surgery, not always for the better. Despite physical therapy, I never regained full use of my leg, and to this day I cannot fully bend it. This prevents me from doing basic things like kneeling, squatting, or sitting cross-legged… things I used to be able to do, back when I was six. 

Because of the lack of motion and function in my leg, I have developed severe arthritis, preventing any meaningful interaction with the world. I can go for short walks; that’s pretty much it. I can barely drive, I use a cane, and so free days are now spent quietly at home. 

There are times that day-to-day life is tough, partly because I experience ongoing pain and inability to use my leg properly. But, being a single mama and having to show up for my child every day has helped me, in many instances, push past the pain and experience the world, however that looks. 

So – my disability has framed my whole life thus far, and will continue to in the years to come. While it’s a defining factor in my life, it isn’t the only thing that defines me. It is the lens through which I view my world, and every choice made is weighed against whether or not me and my leg can handle it. 

Most of the time, we can. 

Published by Erica Black

Erica was born with a rare disease called an arteriovenous malformation in her right leg. She is now an advocate for those with disabilities. She left the corporate world in 2016 to pursue a career as a high school English teacher and began to blog along the way. She has a BA in English Lit and minor in Creative Writing. Her writing has been featured in The Martlet, The Globe and Mail, Heroica, and more. She enjoys cats, reading, and her daughter.

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