Having a disability that progressively gets worse over time isn’t all cupcakes and rainbows but it is not as depressing as you may think. Disability changes a person and without it, you would be a completely different person. My friend Karly explains how Muscular Dystrophy has shaped her as a person. Check it out!
I have a disease that weakens all of my muscles, including my heart, and will continue to worsen as long as I live. It’s called Muscular Dystrophy, and one day, it just might kill me. Now I know what you’re thinking, but no, I do not want a cure and no, my disease isn’t a tragedy.
I spent a long time feeling sorry for myself, but eventually, I came to realize something important: it’s totally okay to be disabled. For me, being disabled is a huge part of my identity! This comes across as a surprise to a lot of people, funnily enough. But I like who I am, and having this disease has definitely shaped me into the person I am today.
I spend a lot of time watching, albeit not always by choice, but because of this, I notice a lot more than some people I know. Spending so much of my life quietly watching others has helped me to pick up on what’s going on with others around me and therefore to be a better friend.
It made me want to write
My words are something my disease can never touch, so I learned to use them. I don’t know if I would have gotten into writing like I am now had I not been born with Muscular Dystrophy, but I do know that it was a key motivator for me. Writing has become such a huge passion of mine and something that fills me with pride. I hope to continue to write about life with a disability and my community for a long time!
It made me a planner
I can’t be spontaneous like most people can. So many places and events aren’t accessible, and it takes a lot of work just for my family to get out of the house. The good thing is I’ve become a pro at planning and organizing, and that’s never a bad skill to have.
It taught me how to advocate for myself and others
If you’re disabled, you’re going to have to advocate for yourself. Ableism is everywhere, and it’ll be something you have to deal with in school, at work, and just a day out with friends or family. You can take it or you can speak up for yourself, and I don’t know about you, but I’d rather speak up. Unfortunately, there are a lot of people who can’t, and that’s made me passionate for advocating for others with my writing.
It made me comfortable asking for help but determined to find moments of independence
I’ve had to learn how to ask for help without feeling ashamed. A lot of people are pretty stubborn about asking for help, sometimes to a fault or to their own detriment, but that was never an option for me. No one can do everything on their own, and I don’t have to grapple with that. At the same time, it’s given me a fierce determination to find moments of independence. I rely on others for so much that if there’s a chance for me to do something on my own, I’ll do whatever it takes to figure out how to do it. If there’s one thing I want people to know is that being disabled doesn’t equal being unhappy and it’s totally possible to embrace your disability. My Muscular Dystrophy has shaped me into the woman I am today, and I’m glad it did.
Thank you, Karly, for writing this article! Karly is a disability and lifestyle blogger so if you liked this post please visit karlyjoy.com for more! If you have any questions please feel free to comment on Karly’s blog or leave a comment on this post and I will do my best to answer.
Life with Spina Bifida is a personal blog that is all about my life with a disability, chronic pain as well as encouraging hope and positivity for those who are suffering. You are not alone!