It has been awhile since I've posted. In the meantime I have finished a few drawings.
I remember the day I picked up leg braces that were specifically molded for my legs. It was the summer of 2003, a year or so after I had started using a cane. For my condition, a patient experiences what is called 'foot drop' early on. It's the dropping of the forefoot due to weakness, or other reasons. It was this initial symptom back in 2000 that triggered the alarm that something wasn't quite right.
I look like I'm dragging my foot when I walk and through the years it has gotten worse. Back in 2003 I knew I couldn't safely walk around anymore without assistance. I wasn't happy about this day. After all, leg braces are so not cool.
Leg braces stick out in a crowd and people stare, the very thing I hate. I don't like to stick out or be known. I'm a behind the scenes person. I barely liked to be noticed and now suddenly my list of assistive devices were growing. But I was going to college, living alone and in a grueling, both physically and mentally, college program so I couldn't have any pride when it came to getting things done. By any means necessary.
This summer day I drove to my orthotics doctor and they showed me my brand new pair of legs. A milky white pair of plastic braces that run up to just below the knee and to the bottom of my feet. They were ugly. I hated them. I felt embarrassed for having to wear them.
When I put them on my walking became drastically different. I was walking like a bionic woman. My strides were quick. I felt myself almost tumbling forward because it was to quick. I'm used to slow. Because they are a rigid plastic frame wrapped around my legs and feet there was absolutely zero flexibility at the ankles, which was difficult to get used to. I felt like a robot with these foreign and ugly apparatuses tying me down. I was like a dog whose head hangs low when their master forces them to wear embarrassing head cones. This was just another milestone telling me that this condition was in fact real and the prognosis correct.
"It really does continue to progress." I thought.
I strided out of the office and though it was sort of a sad milestone, the gained abilities was a positive. I could walk easier, faster and I really did feel like a bionic woman. I could suddenly walk a little easier, something that had become increasingly difficult years prior.
There were all sorts of things I needed to get used to. Imagine wearing a cast on your legs every day of your life. How comfortable or sexy can you feel in those? They were heavy, clunky, sweaty and restrictive. They forced my foot to a constant right angle position, so you can imagine how uncomfortable they make my legs, hips and knees feel. My legs lived in these and they were always uncomfortable. Driving was different, lowering myself to the ground, crossing my legs, sitting styles, ascending and descending curbs, walking up ramps, etc. It was all different and I had to learn all over again.
Sometimes, I don't recognize my legs. The dented shins from years of wearing straps across them. My limp, floppy ankles. My lifeless feet that just hang there with toes that barely wiggle. They tell stories filled with character. They've seen some shit. They have experienced time at a much quicker pace then they should have.
Sexy really is all in your mind but the trick is getting past yourself. It takes some guidance to teach others, and yourself, how to look at braces, wheelchairs and canes differently. It takes a bit of time.
How do you unteach yourself the definition of what's cool, normal or acceptable? Even people who claim to be "different", against popular crowds mixed with efforts to be outrageous and unusual in their appearance still subscribe to a particular group and uncomfortable being with those who are not the same.
It takes a long time and everyone has their own pace, but what's sexy has nothing to do with your appearance, yet it's the confidence and comfort within yourself.
Years ago I did my best to hide my braces. I would never take them off in front of others, in fact most people didn't even know I wore braces. I always wore long pants or long dresses to hide them. Today, I don't care as much. I whip them off in public without a problem. I have not worn a short dress since the day I got my first pair of braces, but perhaps this summer is the time to try that. Another milestone of not caring if people think I'm different.
Nowadays, because the disease has obviously progressed over the years, my legs definitely don't feel like bionic woman anymore. In fact, I haven't for years as my legs have grown slower and slower. But I still vividly remember that summer day -- it was like strapping on my superhero gear that gave me super powers. Super powers that most people do without a thought.
All of us have unique superpowers. It's finding them that takes so long. I have got really good at learning to adapt, but still have a long way to go. My condition continues to force me to adapt, whether I want to or not, and as seamless as it may look, it's a constant struggle and every minute I am forced every minute to put myself out there.
Adaptation is an invaluable tool to have in life. It's all about adapting. If you don't adapt then life leaves you behind.