Figuring out who you are and who you want to be is difficult for any kid. Are you a person who plays sports? Do you enjoy art, music, theater? How do you want to present yourself to the world? How do you want your friends, family, and general community to view you? What impact do you want to make on others? What will your legacy be?
As we grow up, we begin to develop different sides of ourselves and present them in different spaces based on social cues, society’s expectations of us, and our personal beliefs about certain settings. Pieces and parts of our personality and interests from childhood combine with what we find important in life to make up a whole person. And that person becomes an adult with aspirations, plans for their career or opportunities they want to pursue, reasons for volunteering, or becoming an advocate for things that are important to them, their loved ones, and their community. As we get older, we realize that we can use different versions of ourselves to interact with different people, in various settings, for endless reasons. You might notice this at work if you are interacting with a colleague of mutual standing versus a CEO or board member of your company.
Navigating all of this is even more complicated when you and your family are impacted by HD. Figuring out your identity both with HD involved and within the HD community is really complex, regardless of when you find out about HD.
As a child who grew up in an HD family and an adult now navigating the professional world, it has become increasingly more difficult to keep those pieces and parts separate. In some ways, our experiences, choices, interests, and personality come together to create a wonderful, whole human with infinite bits of knowledge and awareness that make us good at the jobs we choose to do and the ways we contribute to society. I’m not just a social worker, and I’m not just an HD family member. I’m uniquely qualified in both areas because of my experiences and education in both spaces.
But I don’t think I ever would have become a social worker, especially in the HD space, if HD hadn’t impacted me for my entire life. None of us reading this right now would be here if HD hadn’t come crashing into our lives, forever changing our path forward.
I think about all the things I wanted to be when I was young, before I befriended HD. A veterinarian. A firefighter. A doctor. A spy. An actor, or maybe a singer like Taylor Swift. A wildlife rehabilitator. A college professor. A shark diver. Some of those things I still wish I had pursued, but HD came tumbling in, scrambling my identity and purpose. My dad and this disease became the most important thing to me. I did everything I could do at 7, 10, 12, 14, and 17 that I could reasonably do to keep him healthy, happy. Awake. Eating. Entertained. Safe. A little less lonely…
As a kid, my HD identity was entirely enveloped by my dad’s identity. He had HD and that’s all I really knew. I used every chance I could to talk about him and HD. I wrote science papers, internationally graded essays, and used art projects and competitions. Both to learn about HD myself, but also to raise awareness for what was happening to him. All that time, I was using his story to advocate for HD, but at some point along the way, I realized that HD impacted me too, and I wasn’t just telling his story. I was telling mine, too. (Continued next week...)
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