Sharing My CHD Story in France

This semester I am fulfilling my dream of living in France. Here I am studying, eating, living and breathing in the beautiful southern region of the country nestled in the small, but still lively, city of Aix-en-Provence. In this beautiful city I have had the unique chance of making new friends, both American and French, who before September 5th knew nothing about me. In this new environment I had the opportunity to choose what role my congenital heart defects play in my life.

Upon my arrival, I started thinking on how to inform my new friends and host family about what I've been through, the good and the bad, and the unrelenting and life-loving spirit that my heart diagnosis and most recent surgery and recovery have given me. However, after a few conversations I realized this task was not as simple as I thought. While reactions of my new friends varied, I was surprised when I ran into some that were unable to see my heart situation as I hoped they would. In the eyes of these few, my heart condition meant I was limited.

The first few days I spent with my host mom we began discussing my heart diagnosis and her reaction was far from what I expected. While at first understanding and aware that I was able to do what any other 20-year-old student could do, as time progressed she began remarking on how far I was walking each day and expressed concern for my heart. She worried I would hurt myself by walking too far during the day.

Her worry was not just limited to my daily life, but also my goals and aspirations. When I mentioned ideas for different tours around the world or even just in France, she would often question if these activities would affect my heart and be too dangerous for me to take on. Despite each explanation, this trend has continued throughout the semester. In addition to her response, others have also followed this tendency.

After telling my heart story and explaining the role of CHD in my life and the lives of others, some of the responses of newly-made friends have evolved into a misunderstanding of what living with CHD really means. Most recognize that I have abilities equal to any other, that my pace just may be slightly slower. Furthermore, after sharing the story of ACHA and my fellow zipper sisters and brothers, they have a better image of what a CHDer really is and the range of our abilities based on our own personal and unique situations.

Still, I have been surprised as some continue to misunderstand and react with worry and fear when I mention my future plans for hiking and exploring wonders around the globe and following my dreams at home.

For me, when I picture CHD I see the poster in my doctor’s office of a young man with CHD running a 5k. I see the children and adults walking in Congenital Heart Walks. I see the efforts of dedicated and caring individuals to transform support for CHDers through Facebook pages, support groups and Ambassador matches. I see the work of CHDers to spread the message of what congenital heart disease really is and to define what success is in their terms to their community and sometimes even beyond.

To me, being a part of the CHD community and being a CHDer is the chance to look at the opportunities and abilities we were given and to share our story, our abilities and our possibilities, whatever way that may be, with our family, friends and the community beyond. The frustrating responses I've experienced exemplify the opportunity to spread the word about CHD and the real situations we face as a community. Having this time in France and hearing the reactions of my new friends and family has really helped me look at my CHD story and how I share it. It has allowed me to see the importance of sharing my experience in the terms of my abilities and gifts, and those of others in my CHD family.