Reflections

If you think back on your life, can you remember something you needed most in your life that you never received? Something that really stands out that was a missing piece.

For me, as a disabled person, what I needed the most was someone “just like me.” Someone I could relate to, look up to get advice from, a glimpse into my future perhaps? I wanted that more than anything. Without a diagnosis for so long, I felt incomplete. Unfinished. Like a mistake. It was impossible to find someone just like me because I did not fully know who I was. In many ways, my life seems like I have lived two different lives: before diagnosis, and after diagnosis.

It is a strange feeling.

I often have a thought running through my head of what life would be like if people could see their entire future laid out before them. I go back and forth in my mind as to whether I think that would be a good thing or a scary thing. The conclusion I usually come to is that it is better that we do not know what lies ahead, but there are instances where it could be helpful. In the end, it is a pointless thought because no one can predict the future.

I think it would have been comforting for me to know that my disease would eventually have a name. That I was not a mistake. That I would be a guiding light for others, like the one I needed as a little girl/young woman. But we do not grow in comfort. We just get more settled in and well, comfortable.

Had I not gone through my experiences, I would not be able to encourage the undiagnosed/misdiagnosed. I would not have been as equipped to encourage others who are currently living in uncertainty. Or know how much the young lady living with muscular dystrophy is struggling with the decision to carry her own child would need someone who understands.

My life today is a reflection of the person I needed as a child. I think that living our lives in that way is not only a fulfilling way to live, but one that can make a drastic difference in the lives of others. We are all experienced in our own unique ways. Thank goodness!

As yet another year is set to end, and a new one begins, our minds start to become cluttered with thoughts of all the new habits we should start as we usher in a brand-new year. The truth is each day is a new beginning. You do not have to wait for a new year to make changes in your life. A reminder I often tell myself.

Since sharing my story, I have had the privilege of watching from afar, three brave young women who live with muscular dystrophy have babies of their own. I remember when the first young lady reached out to me asking for guidance. I thought, “Is this real?” That is when I really started to realize and see the reflection. It was a pivotal moment for me. Since then, we have shared common struggles, and I have shared adaptations that worked for me and my babies. I have offered advice, while reminding them that they have come this far and they have what it takes. Trying to instill confidence and comfort.

I hope that you, too, will head into 2025 seeing yourself as a reflection of helpfulness. The world needs some of what you have to give because of what you learned by never receiving that thing yourself. Share your goodness!

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.