The story my family tells me is that I just couldn’t walk right as a kid and that was how they determined that I have a genetic disorder passed around on my dad’s side of the family.
It’s referred to as spastic paralysis and what that really means is that I have leg cramps in the calves of my legs 24/7. The thing about it is that I used to think it was normal and when I really did get a cramp it would temporarily paralyze me. I remember my freshman year of softball, we were running lines in the gym when it happened. Having people run over with icey hot, forcing my leg to stretch out, while I cried in pain in front of my entire team was probably one of the most embarrassing moments in my life. Two of my coaches carried me out to my mom’s car that day because walking, let alone standing was impossible.
The cure to this disorder doesn’t technically exist yet. There are multiple research studies going on, and before you recommend something, believe me, I’ve likely already tried it. Something that doctors gave me while I was growing up were leg braces. I don’t actually know who came up with the idea that leg braces would help me, because they honestly just made my feet heavier and made me drag my feet more.
I have countless battle scars from tripping and falling on my face. If my embarrassment wasn’t enough from walking weird, I also had teachers confront me. In third grade I got a chair that was shorter than everyone else’s in my class because my feet couldn’t touch the floor. That chair followed me through 4th, 5th and 6th grade. Just to add, my old theatre director gave it to me as a graduation present (I couldn’t keep it, he just brought it to the scene shop and helped me get my name off of the bottom).
Leg braces: hardest article to cover up to the public; also known as ankle killers, and cramp inducers. I’ve had them since I was kid and they never seemed to have an actual effect on my leg pain.
There’s the people who offer their concern, and then there’s the people who bluntly say things like, “pick up your feet.” (As if I’m not trying to). If I could give you an actual number for the amount of shoes I’ve literally walked through, then maybe it could be a better example. We could talk about how my older sister has a growing shoe collection where at one point I had one pair that didn’t actually have holes in them yet.
I get asked frequently if I’ve hurt myself because I’m limping or dragging my feet. The answer is no. I’m fine, I’m literally just walking and as long as I’m going in the direction of my destination, then it doesn’t actually matter how I get there. I appreciate the concern, don’t get me wrong, but then comes the whole, “have you tried (insert some expensive therapy here).”
Medications? Had them. Muscle relaxers? Yeah, don’t expect me to move after one finally sets in. The point is, I might have a disability, but I wouldn’t ever consider myself disabled. I’m still functional and over time, it has gotten better (not cured, but better).
The point is, I might have a disability, but I wouldn’t ever consider myself disabled.
I could tell you about the comparisons between my condition and other relatives in the same blood line, but truth is, we’ve all experienced it differently. This one could be for the people who can still live a “normal” life with carrying around some variety of disability.
I have a great understanding that not all disabilities can be covered up and have a worse condition, like I said, my relatives have experienced this whole passing of genetics differently. This is not meant to belittle, degrade or expose people for how they get through life.
This is a reflection of personal growth. I drag my feet and can still hold my head up and pretend like I’m not thinking about the amount of people who could be judging me. My pain is nowhere near what it used to be and when it does get bad, I know it won’t last as long. I can run, swim and do other things that other people do.