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In spite of everything we love about our parents, there is a part of us that is apprehensive about growing up to be like them. We are reluctant to become heir to their tendencies. Everybody is guilty of this; personally, I have always proclaimed that I would never have my mom’s irritability, hyperactivity, constant mood swings, and inability to actually listen. It was extremely frustrating, especially for a volatile adolescent, and I never really developed patience for these mannerisms. I wanted to avoid them, paint my own way, and be in control of who I was. I just wasn’t aware that, for me, it couldn’t be evaded.
Last year my mom tested positive for Huntington’s disease, which gave an explanation to her behaviors. Huntington’s is a progressive genetic disorder that causes uncontrolled movements, emotional instability, and deterioration of mental capabilities, eventually leading to dementia and death. Currently, there is no cure, and a carrier of the disease will ultimately lose self-sufficiency and become fully dependent on others. A child has a fifty-fifty chance of inheriting the disease from an affected parent; a simple coin toss, at its finest. After enduring my mom’s untimely death last summer, I had to know my fate. Just a simple flip of a coin, is it? Call it…
Such a stupid, erroneous word. But a word that has inevitably changed me forever.
My work reflects the main parts of my life that I feel will be most altered by Huntington’s; it is a representation of the extreme and varying nature of my emotions in response to receiving my test results last August. These photographs are dramatic scenes contrasting my most positive against my most negative outlooks on what my future holds for me. Essentially, it’s a juxtaposition of my fantasies with my nightmares, the black against the white; the difference is simply the presence of Huntington’s and how it can really alter a life.
The amaryllis flower (represented in the logo) symbolizes the impact that HD can have on individuals. The pink flower represents the head and shoulders of a carrier; it acknowledges that the disease can affect both a person’s physical and mental abilities. The white bud in the center represents these reduced physical and mental abilities. The vibrant green leaves and stem that bear the flower symbolize the ever-growing strength and development of HD support and research networks around the world. Most importantly, the symbol represents hope for the future