When I was 4 years old, we took a trip back east, and I had the opportunity of meeting my great grandmother. This is a day I will never forget. Not because it was all sunshine and rainbows. It was my worst nightmare. I walked into a room, where I saw a woman strapped to a bed, making squawking noises. Almost screaming. The doctor unstrapped her arms, so my dad could give her a hug. He sat at her bedside and held her. She continued to move ALOT and scream! I wanted nothing to do with her. I moved to the furthest corner of the room, wanting to hide. My dad tried to tell me not to be scared, but it didn’t matter what he said, I was scared to death. I remember my parents talking to her like she could understand. Two years later at the age of 83 years old, my great grandmother died. They believe that the cause of death was low potassium. This was how I was introduced to Huntington’s Chorea, also known as Huntington’s Disease.
When I was about 12 years old I remember visiting my grandmother. She was unable to sit still and often held a fist. As the disease progressed, her daughter started caring for her. It was too much work. She ended up in a nursing home at the age of 70. My grandma died in 2006 at the age of 74, in her sleep. Cause of death was listed as heart failure. She left behind 5 children. My father is the only one that has been tested. His siblings made a conscience decision not to get tested given the fact that there is nothing they can do about it.
Fast forward to 2014. While on vacation in Chicago, I randomly made a new friend. Her name was Susie. What were the odds that the topic of Huntington’s Disease come up in conversation, with people who had know idea that in the back of my mind, I needed to face something I have been ignoring. Susie lost someone very close to her because of HD. This motivated her to get involved with raising awareness. She did A LOT of research. She went to school to become a scientist, studying the gene and tried to get a job in a HD lab but ended up in a cardiovascular lab . Susie told me that I needed to talk to my dad about testing, and that I should consider it too. I was numb! I was being forced to face my worst nightmare AGAIN in my life, but this time it was my father. For the last 14 years I ignored every little movement, twitch, slurred word, or jerk that he did. I blamed it on my dad just being “weird.” The first thing I did when I got home was take dad to dinner to tell him about my trip, I also told him about Susie and told him that I think he should get tested for HD. If not for him, for his 3 kids. I was scared at how he would react. He's the typical dude who doesn't really go to the doctor unless something is broken, which rarely happens! He hadn't been to the doctor in over 25 years and didn't have insurance. I realized he was eligible for VA benefits, so I prepared all the paperwork, and had him sign it. Weeks later he was accepted, and called in to get his id card. He acted like it was Christmas. Funny thing was that Christmas was around the corner. He wrote in my Christmas card "Thank you for VA benefits baby girl. That's the best thing anyone has ever given me. I hope they find all kinds of things wrong with me so I can take advantage of it." I shook my head and told him that this is not why I did this. I do not want there to be ANYTHING wrong with you. I want to find out that you are healthy and that all of this is in my head, and that you are not HD positive.
I mean, I’m a daddy’s girl and through my eyes, my dad could kick the scariest monsters butt. He is the strongest man on earth.
I know that whether I have it or not, it is out of anyone’s control! I will not blame my father, or anyone, if I am tested positive.
I would like to end with this quote by Margaret Mead. "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
My name is Jessica Clift and I am at risk of Huntington's Disease. Thank you for your support and helping us raise awareness.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
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