The Power of Sharing Our Stories

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by Joe MacDonald |

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I taught choral music in a few local school districts in the Houston metropolitan area in a former life. One year, a friend of mine in the bleeding disorders community asked if I had a group that could provide entertainment at the hemophilia Christmas party. I told her that my small, auditioned ensemble performed all over the city and would love to participate. I had a twinge of excitement as I shared what I did for a living with my blood brothers and sisters.

Before we left for the event, I sat with my students and explained what we mean by a bleeding disorder and shared what I knew about hemophilia. I told them about my son and the complications that arise from managing challenging bleeding episodes. Some students asked questions like “Is he OK? Do you worry about getting a cut or falling?” Their curiosity appeared sincere, and concern flooded their faces.

I was overwhelmed by how much my students did not know about me. We met every day, and I had just found the time to share with them a community that helped me make sense of one of the most significant issues in my life. I continued the discussion and prepared them for an incredibly unique experience. I did not know of any choral directors that could give their children a firsthand look into the lives of those affected by chronic illness.

My group entered the big ballroom where the event was taking place. Their eyes were wide, and they took in the beautiful surroundings. Christmas light filled the room, and the joy of Santa and a beautiful tree gave the space a feeling of joy and celebration. We began singing, with everyone’s eyes glued to the young men and women who came with me. The group sang in tight, four-part harmony, displaying beauty as each chord, each tone, fell over the crowd’s ears. The concert was a huge success.

After we sang, the event organizer asked if my students would like to help Santa deliver gifts to the children. Before I could ask, every member of my group walked past me and met with my friend to receive directions. As I walked around the room, I noticed choir members expand their duties to include leading games, talking with children, and serving drinks and cookies to families. Everyone looked happy and glad that they participated in the event.

I smiled proudly as I realized that I did far more than teach kids to sing; I taught them how to share and offer their talents to a world that needs a bit of good news. Little did I realize that I gave my group the ability to connect with those outside of their usual circle by sharing part of myself.

Years passed, and many of my former choral members returned to say hello. They always talk about the times that we performed for the hemophilia Christmas party. They thank me for giving them a new way of thinking about the world and the ability to stretch outside of their comfort zone. I feel overwhelmed by their appreciation for opportunities gained in the choir. I understand that sharing my story has tremendous power to touch lives in ways I never imagined.

During this time of year, let us remain confident that our message directed to the world has power and meaning. There is no telling whose hearts we touch when we share our stories. Even in a virtual world, there is someone who needs to hear what you have to say. It merely takes a little more effort, but I can assure you that it is worth every ounce of energy.

Remember, all of us need a reason to get out of bed. We need to know that what we have to say matters. As this is my last column of the year, I wish you joy and happiness, and I hope that 2021 will be kinder to us than 2020.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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