Taking Center Stage

Hello! Welcome back, or if you are new here, welcome to Humbly Courageous! Did you ever have to take speech class in high school and/or college? If you did, did it terrify you? I know for me it certainly did. I would just sit in my seat waiting for my turn, with the ultimate dread, pit in my stomach. It was the worst feeling! I’m sure I was in good company. 

When I accepted the role as MDA’s National Ambassador, I knew a big part of my role would be public speaking. I had done some public speaking in front of small groups in my local, and state ambassador roles, as well as a few other public speaking events over the years. When you are sharing your life story, and fighting for a cause that you wholeheartedly believe in, public speaking is a little easier in the sense that you know your material better than anyone else in the room. When I first started out though, it was still terrifying! 

Feeling ready to speak with this guy by my side!

When I was informed of my first speaking engagement  as National Ambassador, even though I knew it would be in front of hundreds of people, I didn’t feel too nervous. I also knew a majority of the audience would be doctors and researchers. When writing my speech, I knew I wanted to relay the message that I was so grateful for their expertise and willingness to help us fight for treatments and a cure, while also sharing my true journey of a grueling and emotionally difficult 44 year long road to my diagnosis. I also wanted them to see that even though my difficult medical journey didn’t stop me from creating a good life for myself, I still desperately wanted answers, so that I could fully know myself. 

You never really know how an audience is going to react to hearing your speech. However, one thing I do know is, whether it is speaking in a Jiffy Lube garage to 15 people, or speaking at a scientific conference in front of hundreds of people, if you are portraying your true authentic self, you will likely be met with compassion and respect. 

After my speech earlier this week, I got to connect with so many people who had a lot of really kind things to say. I heard from doctors, parents who have a  child with a disability, inspiring researchers and others living with neuromuscular disease themselves. While their words were all a little different, the main message was that they appreciated the authenticity of my message. They could relate on some level. I spoke with a mom with tears in her eyes because she had listened to how I navigated my difficult teenage years as a girl with a disability. She was encouraged for her own teenage daughter who lives with a disability, after hearing from someone who has been through it. All of their words deeply touched my heart, and fueled my passion for continuing to share my story.

It definitely took humble courage to step out onto that stage this week, but I can tell you, the nerves I may have felt, were well worth the blessings I received because of my willingness to be vulnerable. There are some parts of my story that are hard to share without becoming emotional, but that’s ok! It’s real life. Knowing that my difficult medical journey is being used for the good of helping others, makes it worth all the pain and heartache. My medical journey is by no means over, but in being diagnosed, I was able to finally, formally be introduced to myself. In turn, that enables me to feel free to introduce myself to others by sharing my story. My journey as MDA’s National Ambassador is going to be a really great one. I just know it. 💚