I have no idea what I’m doing // An introduction

Before we even start, I want you to know that this isn’t going to be inspirational. I’m not here to teach you some grand life lesson or to tell you some tear-jerking poetic story of how I’ve ‘overcome’ my disability. This blog isn’t going to serve as your reminder that ‘things could always be worse’ and my purpose is not to give you some greater appreciation for life through the ‘tragedy’ of mine. If that’s what you’re looking for, I’m sorry to say I’m just not the girl for you.

Karly in disabled babe tshirt
Photo evidence that I am, in fact, a dork.

If you’re still reading, congrats! I think we’re going to get along great. Now that we have that out of the way, my name is Karly. I’m a 25-year-old dork who lives in Florida and I was born with a disease called Congenital Muscular Dystrophy. This is usually where people start to get misty eyed but guess what? There’s nothing to be sad about!

The easiest way to describe my disease is that it causes me to have super weak muscles that get weaker over time. Obviously, it’s much more complex than that, but you get the idea. There’s actually something like 30 different types of CMD, but I’ve never gotten a more specific diagnosis. I’m happy enough with my understanding of my body and to me, seeking a diagnosis just means more needles. I’m not about that life.

If you haven’t noticed already, I suck at providing fancy medical explanations. I never bothered to do all that much research about my disease and I’m bored to tears listening to doctors give me information. Oh well.

Anyway, I’ve never been able to walk or stand on my own, so I’ve used a wheelchair my entire life. When I was around 10 years old I got my first power chair and it was a huge game changer for me. I was never strong enough to push my manual by myself and I’ve always hated sitting still. Having a power chair meant having freedom. First night in it, I drove full speed back and forth through our small apartment until I accidentally crashed into (and spilled) a potted plant. You’d think I would have learned my lesson then, but nope. I used to drive around in circles just for the sake of moving. Actually…. I kind of destroyed my bedroom carpet and our front lawn that way. Oops, sorry, mom. 

Speaking of my mom, my older brother, Kevin, and I still live with her. Luckily, she still puts up with me crashing into her belongings and ruining the carpet in every home we move to. Her name is Betsy, and she takes care of the two of us. Yep. My brother has CMD, too. We’re the sight to see when we go out in public, and I always get at least one fun story out of the weird reactions we get. Adults have to fight not to shed a tear and little kids think we’re in race cars.

I think the strangest thing is when people I’ve never met act like they’re proud of me just because I’m doing something so simple and mundane like grocery shopping. Was grandma Betty going to hand out a gold star to everyone in Walmart or was it just me because I was holding some bread while sitting in a chair? C’mon. It’s almost always coming from a place of good intentions but it’s ridiculous.

Sometimes I’m praised when I’m literally not doing anything at all. I remember once, my teacher was walking me to the bus and all of a sudden they turned to me and said “keep doing what you’re doing! You don’t even know how many people you inspire.” I don’t think I even bothered to respond, partly because I was confused but also because going along with it was just easier.

To be fair, it was also because it meant that I got away with things like leaving class early and calling my mom to go home way too often. I hated my middle school, and I especially hated my biology class, so I’d conveniently feel ‘sick’ about once a week. Seriously. I did that for about a year. The women in the front office all knew I was fine and just wanted to skip class, but they went along with it and told my mom I was a ‘hoot.’ My mom was more upset than the school was.

See what I mean, though? For the average student, that kind of behavior usually leads to a lecture on being lazy and irresponsible, probably even a meeting with a parent, but I did it from the comfort of my wheelchair so I was an inspiration.

As an adult, I can’t get over how laughable that is, and I’ve sort of made it my mission in life to make it abundantly clear that I’m wonderfully and happily average. I love staying in my pj’s all day and binging Netflix, I buy too much makeup and cry laugh at memes all day with my friends. I think that a dress that costs more than $15 is a dress I don’t want in my life. My diet is 90% carbs, and I’ve been unemployed literally my entire life. I like to think I’m a good person, but let’s be honest, Ellen won’t be inviting me for an interview anytime soon.

Now that’s not to say I don’t have any ambition or goals for myself; I graduated from college in December of 2015 with a degree in business management. I started job hunting as soon as I got out of school but I’ve been stuck in that phase ever since. I’ve gone to countless interviews and followed up, I’ve made tons of phone calls and emails. Last year I even signed up with an employment agency and there’s been no progress.

On the upside, I’ve gone past the ‘panic and desperation’ point of my joblessness and moved right to ‘I literally can’t be bothered.’ The general public can’t stop praising me but employers won’t have anything to do with me and honestly? I think that’s hysterical. I also know that needs to change.

Karly on Main Street, USA.
My best pictures all come from Disney days and I’m not sorry at all.

So, here we are! I’m tired of hearing ‘no.’ I started this little blog to make an opportunity for myself since the world doesn’t seem to know what to do with people like me. I’ll be the first one to admit that I have no idea what I’m doing. Obviously, I’m not the best writer (this post is all over the place) and I’m not an expert on anything at all, but I have no shortage of ridiculous stories and a lot of strong opinions.

Look, I’m just a coffee loving, Disney obsessed, cat mom who loves to talk a lot, but maybe if I’m lucky, I can help at least a few people learn that you don’t have to be afraid to interview somebody just because they’re disabled or cry when you see them buying some soap. At the very least, maybe I can make a few people laugh with me. I don’t know.

♡ Karly | Follow my blog with Bloglovin 

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