I stumbled into my future profession when I took a creative writing class as a junior in high school. I took the class because it was an elective, something easy. In other words, it was what my teenage self considered a “blow-off,” something that didn’t require studying. Studying, I thought at the time, was boring.
Until then, I had never expressed any particular affinity for writing. In all my years of school, I wrote because I was required to. A teacher would give me an assignment, so I had to write. At no point did I long to put pen to paper.
That creative writing class changed my opinion, because the assignments the teacher gave us — we had to write poems, plays, and short stories — allowed me to use my imagination. Apparently, I had quite an imagination, because I got an A in the class.
In accessing my imagination, I found that I loved and longed to write. Writing became an outlet to express the sadness I felt as a teenager. It became like a close friend. As a shy person who lacked confidence at the time, I needed friends. The written word became a pathway for me to figure out how I felt and what I was thinking about.
I share all of this to say that I wish my wife, Jill, and daughter did not have Huntington’s. As much as I appreciate you reading this, I wish I wasn’t writing a weekly column about what it’s like to be a caregiver. This journey I’m writing about requires my powers of observation, which I have honed over years as a journalist. I wish I could turn those powers of observation off, but I can’t.
Instead, I notice a lot.
For instance, I notice how often my wife’s toes wiggle and twitch. I notice her eyes moving from side to side, a movement known as choreas. I notice how often my daughter becomes sad knowing what’s in store for her and Jill.
I wish I could turn off my imagination, which powers ideas for future stories, so that I wouldn’t have to think about the ways my wife and daughter must deal with life and their disease, and how much they suffer from anxiety, sadness, depression, and physical complications as Huntington’s disease continues its inexorable march in their minds and bodies.
Instead, I feel sad, so I write. I observe, so I write. I breathe, so I write.
I write to inspire. I write to educate. I write to provide comfort. I write to give hope. I write to encourage love in families where members are dealing with someone who has Huntington’s. I write to understand my own feelings. I write to tell my wife and daughter how much I love them. I write because it’s therapeutic for me and keeps me sane. I write because it channels my sadness into something positive.
If you have read this far, I thank you, because these words are written from my heart, and if we can understand one another’s hearts, the world will be a much better place. And that, ultimately, is why I write — to try to be a candle in this sometimes harsh, often unforgiving, sometimes sad, sometimes happy, sometimes difficult, and often dark world, where rare diseases rip into people’s bodies and minds, but can never take away the love that bursts and blooms in the hearts of caregivers for the ones they see suffering.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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