By Chelsi Warren
If you know me you know I’m not a “normal” person. I like unicorns and glitter. I am extremely sarcastic and yet crave connection with others. I fall a lot and laugh at my own jokes (that aren’t actually that funny.) I’ve grown to accept this woman I’ve been growing into, or at least the one that is on my surface. When it comes time to let someone deeper into my life I know the woman they think they know isn’t the full story.
I’ve been shaped by HD, growing up with my mom being ill from a very young age I believe it has made me a person that wants to help, wants to comfort, wants to love so deeply. Yet, I constantly cut off others from getting to that other “normal” that lives within my biological make up.
These new thoughts bubbled up after having dinner with another person affected by HD, Brittany. When we first sat down we didn’t really know what to say. A few surface level topics about food and weather - the conversation quickly turned into her asking about what I do with HDSA. I told her my story of being a young caregiver to a mom that was HD positive, the look on her face was something I will never forget, the face of “I understand you,” with a sigh of relief. That one look broke down all our walls to continue in conversation and share our experiences. Our stories had many similarities but one difference was she was tested at 18 and I wasn’t, and I’m still not 8 years later.
Maybe you’re like me, scared of being tested. Why am I so scared to be tested? Am I afraid of letting these two souls collide? One soul that is HD free and lively and one that is frozen, almost paralyzed to the thought of being HD positive. How vastly different these souls are, but they collide so often and the older I get the closer and more real the affected soul becomes. Those of us affected by HD can’t run from it. Many of times those of us at risk slip into habits consciously or subconsciously in hope for acceptance regardless of not being normal. We crave this acceptance constantly because it’s been lost in our own world of not accepting HD and its stitched in place in our DNA. So how do these two souls, that both seem normal to us, come together and live in harmony, can we really allow them to exist hand in hand, in hope the lightness form the unaffected soul won’t be suffocated by the darkness of the HD affected soul.
I think if we, as affected persons, learn how to accept both sides as our complete normal by sharing and talking about it to others, we will eventually be in a space where both can coexist and eventually become one. My challenge for you is to find how these two “normals” can coexist in your own life. Maybe being in this position to understand that where you are may not be okay, but believing that it will be. This constant war within ourselves will end with this new mindset and we will be at peace with this new coexisting soul that is so beautifully and individually created to do great things.