Just Like Me

Hello and welcome to another week at Humbly Courageous! It's a really strange feeling when you are a child, and you are surrounded by others who aren't really like you. Or at least that is how it felt a lot of the time. As an adult, I know that of course I had things in common with my friends that were outside of my disability. Lots of things in common. However, when I would go out in public, or turn on the t.v., I didn't see anyone like me. I longed to find that one person who could relate to me. It was a deep void, that I didn't fully understand myself, let alone have the words to explain it to anyone in my life. Combined with being in limbo searching for a diagnosis for 44 years, it was in many ways a confusing and internally lonely time in my life. 

Social media, being the beast that it is, meaning it can be very harmful in many ways, also has one really great thing going for it. It allows those of us with disabilities to connect in an instant with someone who is living their life with very similar struggles. It's really just a wealth of great information, support and reassurance that we are not alone. There are, in fact, others out there who we can learn from. When I was younger, and even well into  adulthood, I just felt very lost and hopeless in that aspect. So, for that very reason, I am a fan of social media. The disability community has so much to say, and so many ways we want to help educate. For too long, we didn't have a voice with the capability to reach people on that level, but now we do! One of my good friends Rhi, who shares my same diagnosis, lives in Australia and we met on social media. How awesome is that?! Without it, I would never have the opportunity to connect with her, or even know of her. I love being able to share my story with my platform of being the National Ambassador for the Muscular Dystrophy Association. A lot of that work is done on social media. One of the ways I do that, is by sharing weekly Motivation Monday posts with MDA. These posts connect my weekly blog post with a motivational quote to start the week on MDA’s social media pages. 

Sharing my story at the Toast for Life Chicago Gala

One of many Motivation Monday posts

For a period of time, from about 8-10 years old, I served as the Easter Seal Child for the state of Indiana. During that time, I went to events where there would be others with disabilities, but I never had much time to get to know anyone, and most of the time they weren’t close to my age. There wouldn't be any communication after the event was over. So, that was very sporadic, and still I hadn't met anyone “just like me.” It's a funny feeling when you feel like you are one of a kind. I really thought I could never connect with someone who would fully understand what I live with on a daily basis, and to be able to have a role model to show me that I was capable of more than I thought. I was just muddling through life without much guidance from anyone who understood, and could encourage me in the way that I really needed. My family was wonderful, and they encouraged me for sure, but encouragement coming from someone who has walked in the same trenches you are in, is a much different perspective. A much needed perspective. 

As a little girl I loved to read. Books were another place where I never read about anyone “just like me”. I can’t remember how old I was exactly when I came across the book  “Joni”. It was a book about a girl named Joni Eareckson who became paralyzed from the neck down after diving into a lake and breaking her neck. Although her story and mine are very different, it was a book about someone who struggled physically. It was a story about how she was living her life coming up with different ways to do all kinds of things. I was fascinated and motivated. I was starving for that kind of mental connection. Unfortunately, those type of connections weren’t easy to find. That was probably the one book in my school library at the time that even talked about disabilities. 

A few years ago, before I was officially diagnosed with Muscular Dystrophy, I tried to set up a support group called “Just Like Me”. I wrote up a proposal and sent it to the school system in my area, as well as met and talked with individuals in my church. I wanted it to be a place

where kids could come and talk openly about their disabilities and meet others who may share a similar experience. I wanted to create what I needed in my life as a child. Unfortunately, the program just never took off. No one seemed overly interested in helping me to launch it. I was disappointed, but I still had a feeling one day I would be in a position to be able to reach others through sharing my life story. It very much felt like my purpose in life. 

Fast forward a few years, and I found myself putting my purpose into action by starting this blog and naming it Humbly Courageous. The name just came to me one evening, and it just felt so fitting. Everyday, I’m faced with my disability and it humbles me in many ways. I’m forced to be courageous in the battle. It’s how I live well. By being courageous enough to face this head on and face whatever comes next. I dream of writing a book one day that reaches people like Joni’s book reached me. A seed was planted when I read that book. It was a seed of hope that propelled me forward. Never give up on your dreams that lead to living out your purpose. If a door won’t open, try opening it a different way. 💚