Hello and welcome back to another blog! I often hear people say, forget about the past. You can’t change it. Look forward to the future! While I agree somewhat with that line of thinking (yikes, some of my past I am happy to forget!) I also think it’s important to sometimes look back to see how far we’ve come. What we have learned, what we’ve held onto that’s worth holding onto, and what we have overcome to get where we are today. I think our roadmaps would show that sometimes we stalled, many times we veered off the road, and a few times we stayed on course.
When I think back in regards to my disability it is astonishing how different my view of it is now verses then, and seeing how it all played out. My elementary years I was just starting to learn how different I walked from my peers. I remember a lot of surgeries, some bullying and mocking, and also some really great friendships that were formed that have stood the test of time! I was blessed to have such a wonderful group of friends. They didn’t miss a beat, and included me as one of their own. Still though, there was an internal struggle that was forming inside of me. I wanted to erase my disability. I always felt so exposed. I didn’t have anyone to talk to that could really understand. In my mind, my best option was to pretend like my disability didn’t exist. I was striving to be someone I wasn’t.
During my middle school years, those thoughts only grew stronger. I would always think, I just want to be “normal! To me, normal meant not walking with a limp, and keeping up physically with my peers. Just blending in. One thing I learned to love was fashion. That was something I could control to make myself “fit in” more. I loved staying on trend with what everyone else was wearing, but also liked a little of my own unique style. Not so much of course that I wouldn’t still fit in.
High school years were some of my hardest years. I dealt with a lot of jealousy, and just simply was struggling inside. I hated my disability and wanted more than anything to make it disappear. I was angry. I was angry that my disability didn’t have a name, and doctors frustrated me. Still, I forged on and still had those great friends who stuck by my side. My high school class voted me best dressed my senior year. To me, that was like winning a state championship! At that time, I loved that I was (as shallow as this may sound) being recognized for something that had nothing to do with my disability.
College years, as I’ve talked about before in a previous blog were hard too. While I did have a lot of fun, I was also doing a lot of self numbing. Still trying to escape my reality. Trying to be someone I wasn’t. Pretending a huge part of me didn’t exist except when I was forced to face it for a surgery, or when I fell, or struggled to get around on campus.
I continued to struggle with acceptance of myself for many years. I continued to numb myself from my reality. My kids were a good distraction because there’s little time to think of oneself when caring for young children. I can’t think of any better way to spend my time. However, being a mom with a disability came with a unique set of challenges, and again, I found myself feeling jealous of my non disabled friends. The ease in which they would carry their child while doing a hundred different things. I wanted that so badly. I didn’t want to have to push my child around the house in a stroller. I wanted to carry my boys! We made it work, and looking back I just feel so proud of me and my boys for the way we all adapted to our reality. Still, I resented my disability. I continued searching for answers.
You hear about light bulb moments. A moment in time when something just clicks. The switch is flipped on and it’s a hallelujah type of moment. My moment came in the bathroom of a local coffee shop. My phone rang and it was my geneticist telling me that I had a diagnosis. She told me that I have a form of Muscular Dystrophy called Bethlem Myopathy. In that moment, I accepted myself. I saw myself for the first time as me. I could breathe. I was 44 years old.
So, for me, I do like to ponder my past. The good and the bad. I see that during those years of not knowing what my diagnosis was, I was still me. I was who I am today. Sensitive, caring, determined, stubborn, funny, sarcastic, persistent and a little bit moody!
Of course, I still have ups and downs with embracing myself. I would be lying if I said I didn’t still get angry at times that I am disabled. These days though, I tend to look at my disability as a beautiful part of me that has taught me more than anything in my life. It’s taught me not only about myself, but also so much about caring for others and being sensitive to their needs. God knew that I would have to walk this journey with humble courage. He knew that one day I would be encouraging others to live their lives and face their hardships with humble courage too. 💚
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