By Chelsi Warren
During my teen years, my mom was in the mid to late stages of HD, making it difficult for her to go to events at school, dance competitions, or even out in public without any issues. No wheelchair access or her constant movement and noises drew unwanted attention and whispers from bystanders. Going to the same school for 14 years, a lot of my friends knew my mom had some sort of mental sickness, but I hardly talked about it, and only a few close friends knew what was really going on in my true heart.
My family never really processed with me about the fact that my mom was sick; it was just our job to be the caregivers. As if being a teenager wasn’t a struggle already, coping with Huntington’s was a heavy weight in that time period. Please don’t think I felt resentment towards my mom, because that would be false; I loved my mom dearly and would have done anything for her. But it did lead me to some constant questions:
Why my mom?
Why Huntington’s disease?
Am I going to be sick?
It wasn’t until my senior year when I started going to my church youth group regularly and met the new youth director. He knew of my family’s situation and I would sit and talk with him before youth group about a lot of nothing. This was my teen brain testing him to see if I could fully trust him with what my true self was going through. He always had an open door and time for all my stories and struggles. After 2 months I finally broke down in his office after a hard afternoon with my mom. It was so freeing; all the things I was juggling to hold onto to keep my life normal were no longer needed. I could simply be my true self, Chelsi, a teen who’s a caregiver to her mom with HD, and I wasn’t judged for that.
I don’t say all this to worry or stress you out, but instead to encourage you to reach out to others. Why? 1. To show them who you are and your life, to have them better understand what HD is and how it affects you daily. 2. For you to be able to have a person(s) that can walk alongside you and process where you are. Your feelings are valid; how you feel is always yours. I challenge you to find 3 people, one being your parents or guardian, one being a friend and the last to be a mentor, all of whom you can share and grow with.
Life is hard, but it’s better when we do it together.