What if . . .

Most of my life was built on a hope that someday I would no longer be disabled. Many of those years hung on a prayer that my “unidentified” disease would be eradicated.

I spent countless hours thinking about how I would live my life once my miracle happened. I pictured strong legs running with ease. I envisioned keeping up with and blending in with my peers.

I thought of all the adventures I would go on. I thought of the stress my family could let go of, not having to worry about me and all the medical woes that came with … me. They deserved this cure as much as I did.

It felt right that my cure would come. After all, I did not really feel comfortable in my own skin, so surely the “glitch” would be “fixed” sooner rather than later. My legs could then “connect” to my brain and all the plans it had for me would be within reach.

At 51, I still have not been cured of my Muscular Dystrophy (now at least I have a name). My daydreams about life without a disability have become less frequent. Those thoughts no longer regularly take a front seat with my time.

Now I think, what if I had been cured? I would have missed so much. My life would be far less meaningful. The tapestry that life with a disability has created would not be as beautiful. The colors would be less vibrant, the highs not as high.

I would not get to hear my sons tells me that their lives are so much more meaningful because they have a mom like me.

My husband would not be pushing me all over the world in marathons, where we have blessed and been blessed by so many strangers in a split second as we run by. There are so many deep, unspoken moments.

I would not have had the opportunity to speak to hundreds of people on stage during my time as National Ambassador for the Muscular Dystrophy Association. Spreading hope to those who have a long road ahead. How lucky I was to have such an opportunity!

I certainly would not have the opportunity to reach others through this column, and have the joy of hearing countless people say, “You will never know how many people you are helping by being so vulnerable.” That gets me every time.

When we are younger, we assume we have our gifts and talents figured out. After all, when we leave high school, we are expected to know exactly what we want to do with our lives at the ripe old age of 17 or so.

I joined a club in high school called A.W.O.L. (A Work of Love). When I first joined, it was to check a box to look good on college applications. I was hooked after the first service project. We shopped for Christmas gifts for those in need and delivered them. That experience changed me.

Life with a disability molded me in such a way that I easily recognized their pain and emotional distress. Seeing their joy mixed with sorrow deeply resonated within me.

The experiences with A.W.O.L. led me to my career path. After college, I spent many years helping those with disabilities and felt that was exactly where I was meant to be.

Somehow, through all of this, I was drowning out the kind things people would say to me. Others were able to recognize my gifts and tell me what they saw in me. What they thought were my most impactful qualities.

What if I had listened? Could I have made more of a difference had I truly leaned into that earlier?

Or, what if, I am exactly where I am supposed to be, arriving at this moment exactly as planned?

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of the Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.