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.