Once in a Lifetime

Hello and welcome back! When I got the call asking me if I would be interested in interviewing for the MDA’s National Ambassador program, it stunned me. For one, it is obviously such a once in a lifetime incredible opportunity, but also just 10 minutes before that call, I had written down (for the third year in a row) “become National Ambassador for MDA” as one of my big lifetime goals. I got emotional because it was all just crazy how it happened that way. I was kind of looking around to make sure I wasn’t being pranked, haha! 

When I was younger, my mom had a friend who was connected with the Easter Seal Society. She told my mom she thought I would be a great representative for the Easter Seals. When I was 8 years old, I went on to become the Easter Seal child for the county I lived in for one year, and then was chosen as the state representative for two consecutive years. I loved my time with the Easter Seals. It gave me confidence, and also I liked that I felt like I was helping others, which I realized was something that made me feel really good inside.

Fast forward to when I was 44, and diagnosed with Muscular Dystrophy after a lifetime of searching. After getting connected with the MDA at their local office, I left there with a little extra spring in my step. They told me I could be a local ambassador, and explained to me the duties of an ambassador. That ignited a passion in me that I had never felt before. I did some local ambassador activities, and enjoyed connecting with the MDA community, and some of our awesome partners who are in this fight with us! 

First speech for MDA

Jiffy Lube Shamrocks Campaign Mission Moment 

My last in person speech in 2020 for Shamrock campaign with our awesome partner Jiffy Lube!  ☘️ 

When I was chosen to be Indiana’s state ambassador for the MDA, I was elated, and also a little nervous. I can be pretty shy and quiet until I get to know someone. Often, people describe me as soft spoken (my family would probably disagree 😄). The thought of speaking in front of a crowd took me back to speech class in high school and college. My palms sweat just thinking about that! However, after doing it a few times, I realized it was easier to talk in front of a crowd when I was just telling my story as a person who has lived with a lifelong disability. After all, I know that story pretty well! 

The day I got connected in person with MDA💚

As we all know, COVID hit and everything became virtual. Turns out I’d much rather give an in person speech than a virtual one. I’m certainly no technology wizard, and have had a few laughable moments for sure. If you’ve witnessed one of those moments, I’m sorry and apologize in advance for any future mishaps! 

We do what we have to do though, and I had made a commitment. So, I said yes every time I was asked to speak, even when I was pushed outside my comfort zone. I did it because I feel it is so important to share our stories in order to help others. If you’ve read previous blog posts, you know that helping others find their way on their journey with Muscular Dystrophy is my true passion. 

Below is a quote from Nicole, a super awesome college student who I’ve formed a connection with through social media, and now we text back and forth. Nicole also lives with Bethlem Myopathy.

“Watching you spread awareness about our disability helped me realize that what I experience (although would be fortunate for some) is still something quite real I deal with. So basically I learned that I don’t need to constantly invalidate my feelings every time I get down about something I’m going through unique to my situation. I think it’s really awesome how you are spreading awareness of MDA 😊”

She also says, “Thank you, you are seriously such a comfort and inspiration to me”

I teared up when she said I was a comfort to her. I always longed for that comfort from someone who truly understood. It makes me feel so good to be that for someone else. When I receive messages like this, I’m reminded of how important sharing our stories is. It not only reaches others who are feeling alone, but helps me too. It provides comfort on my end as well. I can’t wait to meet my new friend in person sometime soon! My favorite part about sharing my story is connecting with and speaking to others who have also longed for that connection. It is just a really awesome feeling. 

I am completely honored to be stepping into this role as MDA’s National Ambassador. I hope that by humbly courageously stepping outside of my comfort zone, it may encourage others to do the same. That’s where we blossom into the true person we were always called to be. I can’t wait to see what this year brings. I’m so ready for this journey  💚