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MDA Ambassador Guest Blog: Being Unique is Powerful

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MDA Ambassadors play an essential role in furthering MDA’s mission while representing and empowering the neuromuscular disease community. Quest Ambassador Guest Blog series provides a platform to share their personal stories, perspectives, and experience.

It feels like just yesterday that I was meeting my husband Jamie for the first time in the science hall of our high school. That was over 30 years ago! Not too long after I started dating Jamie, he said something that I believe planted a seed that would start me on my journey of accepting myself, disability and all.

Up until that time, I struggled quite a bit constantly wondering “Why me?” I would be lying if I said that the thought never crosses my mind these days, but it’s infrequent now. It’s taken a lot of hard work to get to this point, work fueled by the truth in a simple thing that Jamie said, “You are unique, there is no one else like you.”


Amy and Jaime Shinneman

At the time, that was true, and I guess in a sense it still is. There was no one at my high school even remotely like me from a disability standpoint. At the time, I was “unidentified” according to my doctors. I liked his word better. It made me feel special, and like there was a reason for all the struggle that comes with living with a lifelong disability – and a disability that would take more than 40 years to be properly diagnosed, at that!

Being unique comes with its own set of challenges. It is isolating, sad, infuriating. But also, it can be fun, exciting, mysterious – almost like you have insight into a whole different world that many don’t have. It gives you the ability to see things from a totally different perspective. It’s like an exclusive club, except it is one that people aren’t lined up to get into. Living with a disability, my life experiences are very different from most. There are things from the start to the finish of a day that go through my mind that those who are not disabled would never need to think or worry about.

I’ve done a lot of reflecting on my uniqueness. It does still feel isolating a lot of the time, but less so now that I’ve connected with so many others in my same or very similar situation. If you are able to view your uniqueness as a positive thing, your unique qualities can be an extremely powerful and motivating tool; especially when you can use it as an opportunity to help others.

When I started to view myself as someone who was able to help others with all that I have learned from living life with a disability, everything changed for me.

Instead of being insecure about my uniqueness, I now see it as motivating. There are endless possibilities when you step into your unique qualities. You become much more confident when you are able to see your differences as a way to help others, as well as a tool to teach others. Living with this confidence, you are able to clearly see your value and all that you have to offer. Your internal dialogue will change as well. The way you see yourself on the outside will mirror who you are on the inside.  So don’t be afraid, to be the true YOU!

woman in indoor pool

Amy Shinneman

Being unique isn’t something I would wish for, but now that I’ve connected with it, it feels right. Of course, it would be wonderful to someday be cured of my disease. I would love to have the years to do all the things my disabled body has never allowed me to do. I think about it a lot actually. Especially seeing things I was once able to do slowly slip away from my reality as my disease progresses. I also think, if that were to happen, I wouldn’t be the only me I’ve ever known. I would miss the girl who has humbly courageously carried on, head held high, swaying back and forth as I propel myself forward on these legs that have carried me through so much.

I hope you too can tap into what makes you unique and use your uniqueness to help and encourage others. This world needs your voice, your story. There are people on their journey just starting out that need to hear from those who have gone before them. Be proud and strong in your uniqueness.

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