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To the Horrible Disease That Turned a 19-Year-Old Into a Caregiver

Dear Huntington’s disease

I’m 27 years old, and I’ve spent more than two-thirds of my life having to fight your demons. I was alone and scared when you showed up in my home in high school. My mom was too young and had so much life to live.   It was just her and me in the house trying to figure out what was taking control of her body. Why she would have outbursts and couldn’t remember certain things. Why you turned, my mom, who was my best friend and biggest supporter, and made her angry with me and the world. She was so angry and forgetful; she didn’t even show up on to my last dance recital when I was 16 years old. It was also my birthday. I remember being on stage and looking out into a full audience and seeing five empty seats where my mom and grandparents were supposed to be. It made me spiteful towards her and angry that she wasn’t herself. 

10330258_10152074077703016_5586926321929004023_n It wasn’t until a few years later that I found out on my 19th birthday what she was really coping with. You had me find out — on my birthday — that my beautiful mother was dying. I’m an only child, and my mom was my primary caregiver. But that year I started becoming her caregiver. You took a 19-year-old full-time student in college with hopes and dreams of a traveling and being a normal young adult and you faced her with being responsible for her mom. It only took a few months away at college to realize I needed to come home and commute part-time to school. The house used to be so clean, and now there was food cemented on the floor and milk spilt on the counter. It was the awful reality that my mom was having movements that weren’t allowing her to do basic tasks like get ready for work and feed herself. Her driving started getting worse. My once loving mom turned even more angry and closed off from society.  

See, HD, you made my mom, who was a full-time therapist for 25 years, who had a passion for helping people, you made it so she couldn’t even take care of herself, let alone work. You took her dignity and her self-respect, and you made her feel like she shouldn’t even be around anymore. She felt like she was burden to her loved ones. She told her best friend she didn’t want me taking care of her. I was still only 21 at this time, and she didn’t want that life for me. You made my mom have to move into an assisted living before she was 50. She spent a couple years in an assisted living and then four years in a nursing home; you’ve taken everything from her. I hate you for taking her soul and spirt. Her body now lays there on the bed in that nursing home room. She doesn’t move or respond to me anymore. You took her mind from me and made it so there’s just an empty body in that bed staring at me.

But HD, that wasn’t enough for you, you weren’t satisfied enough with just my mom; you had to make me now at risk. You made me endure more than 15 years of watching my mom get sicker and sicker, to turn around and laugh in my face that I now might have to face these same demons.

That’s not the end for you. You make it so thousands of other friends in the HD community live with the same stories, sometimes worse than mine. You even go after young children and young adults. You take away kids, parents and grandparents. When is enough going to be enough? Enough have passed, and we in the HD community are not going to sit back anymore and let you run our lives. We’re fighting back and in full force and every day come closer to making it to the day when people have to ask, “What was Huntington’s disease?”

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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