Hello and welcome back, and a warm welcome if you are new here! I’m glad you are here. As a person living with Muscular Dystrophy my entire life, I hear over and over, you are weak, your weakness, your body is weak, your muscles are wasting (A weakening, shrinking, and loss of muscle caused by disease or lack of use) When I would go to my PT appointments I heard the word weak a lot because it was true, my muscles are weak. No one was saying anything that wasn’t true.
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| Team Momentum’s NYC Marathon team showing our strength! |
However, as a child hearing that word on repeat every time I would see a doctor, that word embedded itself in my mind and began to grow in areas it was never intended to. It took up residence in my mind, which by the way, is not affected by my MD.
I kind of just felt weak, as a whole human. I wasn’t, but I often felt defeated before I ever began. I was a very negative thinker. I’m honestly still trying to heal from that mindset. Again, progress, but still a battle. If someone would compliment me, I would immediately try and talk them out of it. Why do we do that? I think it’s because we don’t believe what they are staying is true, because that isn’t how we see ourselves. So, to the person receiving the compliment, who is not confident in themselves, it feels untrue. I convinced myself that anything kind someone said to me was because they were trying to make me feel better, because I was weak.
As I’ve developed and recognized this area in my life that feels true to my calling, I feel stronger. Emotionally, strengthened. If someone compliments me, I’m working on simply saying, “thank you, I appreciate that.” I no longer view myself, as a whole, as this weak image. I recognize that yes my muscles are indeed weak. That can’t be ignored, but I am not defined as weak as a whole person. A part of me may be weak, but I am strong. You cannot put your life story out there in such a vulnerable way, and not be strong. It’s not easy, but it helps others, so it’s beyond worth it.
I think sharing our lives, the struggles, the victories, all of it, helps us strengthen our humanity muscles. If we want to help change society’s view of people with disabilities, we have to be willing to share what it’s truly like living with a disability. Collectively, we can be the change. We each have people in our lives that are willing to learn, to listen. Then, maybe they will start to share with people they know. It is a tedious process, but we have to keep trying. If you do it with helping others in mind, it makes you feel stronger. I love it when a non-disabled person tells me that I have helped them to understand more about disabilities. That it’s opened their eyes to what living disabled is like from my perspective.
Since opening up more and more about my story, I can tell you that the 44 years I spent largely running from sharing my story compared to the 3 or so years I have been openly sharing my story, are like night and day. There is a light there that wasn’t before. I felt weak, now I feel stronger. Even though my physical condition deteriorates, my strength in other areas is stronger than its ever been. By no means, does that mean I’m giving up on my mission to strengthen my muscles to the best of my ability, and grab ahold of every possibility for even the smallest amount of improvement. That fight most definitely continues. I think you too will feel humbly courageous as you start to share your story. 💚
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| Team Humbly Courageous finishing the NYC marathon Strong in different ways 💚 A mother, father and son with our other son cheering us on from the stands right above us |
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