Openly talking about and sharing my disability and all that comes with it is fairly new to me.
In fact, if you knew me growing up you may even be surprised that I am being so open. I used to be the exact opposite, and except for a select few people, I just didn’t talk about my disability, or the struggles that it causes.
Part of that was because growing up, even though I was disabled, I didn’t have a diagnosis. So, it was hard to talk about something when I didn’t even know what I was talking about. A frequently asked question growing up was, “What is wrong with you?”
That question immediately sent me into a panic. It was hard reliving the fact that I didn’t know what was “wrong” every time someone would ask me. I felt so embarrassed when I would say “Well, I don’t really know.” People would look at me like I had lost my mind, and some would even question me saying, “What do you mean you don’t know?”
That happened hundreds of times before I was diagnosed, and I carried a lot of shame around for many years because of that. Until I was officially diagnosed five years ago, I just didn’t speak of my disability too much.
It was like the script flipped when I was diagnosed. I had this nudging to share more of my story. I felt like I finally knew all of me and I felt more confident to share. As I got involved with the Muscular Dystrophy Association, I felt like I had a purpose to start sharing my story to reach others who may be feeling alone. I started out serving as MDA’s Indiana state ambassador. I would go where fundraisers were being presented to different partners of the MDA with the executive director. He would introduce the fundraiser and goals, and then I did what was called the “mission moment.”
That’s the part where I connected my story to MDA’s mission. He and I would brainstorm ideas of ways we could help and make connections to reach others. He suggested I could start doing some videos they could share to reach families and individuals living with muscular dystrophy. When he first brought up the idea of making videos, I was intimidated by it. I really couldn’t see myself doing that! He encouraged me to do so, and as time went on, I stumbled my way through it. I guess you could say I have gotten more comfortable with it.
Sometimes, we just need that one person to push us outside of our comfort zone.
I will never forget the first message I got from someone from a different country who had run across one of my videos. It said, “I just looked at your page. Thanks for letting so many available information on growing up with a physical disability. As a parent of a child with a physical disability, has given me one more good prospect to go ahead with HOPE. You are beautiful by the way. May your path ahead be always bright and full of joys.”
If I was still questioning being vulnerable and sharing my story to help others, after reading that, I would no longer question why I was doing what I was doing. Through sharing my experience of living with a disability to help others, I had given ONE person HOPE! I get emotional when I think about the many after that who have sent very similar messages. They felt hopeless, and finding someone who has walked a similar path gives them hope. I longed for that growing up.
Sometimes I don’t feel worthy of some of the messages I receive. However, to me, it just solidifies that by walking humbly courageously, and opening myself up with a mission of reaching others who are feeling alone, I am on the path meant for me. There is purpose in the struggle. I have been blessed by being vulnerable.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.