One summer when I was in middle school, my parents and I went to Florida to visit family. On a gorgeous day (well, as much as wet heat can be gorgeous during the summer), my mom, dad, and I went to Marina Jack — a deep water marina and waterfront dining destination — in Sarasota. We walked as far out over the water as we could before noticing storm clouds gathering overhead. We weren’t prepared, even though afternoon thunderstorms are common in Florida.
We rushed toward the car, but it was too late. It began pouring rain. By the time we got to the car, we were soaked. We had lived in Florida for many years and should have been prepared for the storm. But the skies had been so clear that a storm was the furthest thing from our minds, and storm clouds gather quickly.
That is what it can be like to feel the sadness of Huntington’s disease.
There are clear days when I am doing the most mundane things, but the storm clouds are gathering. I start thinking about how Huntington’s has affected my life and how it will affect my future. Sometimes, I notice quickly and it’s as if I got back to the car before it started raining. I push the thoughts out of my head and practice mindfulness to keep them away.
But more often I’m not that lucky. I start thinking about my mom and how it feels as if a clock is counting down the time I have left with her. I remember that wherever I move, I will have to be near a Huntington’s specialist care center. Individually, each thought is sad. Together, they create a torrential downpour.
The only way to make the rain go away is to distract myself. If I’m home, I pick up my kitten (with her permission, of course), pull her close, and pet her until her purrs make the clouds dissipate. If I’m out, I scroll through Facebook until I find a particularly interesting Tasty video or BuzzFeed article. It’s hard to focus on the negatives in my head when I’m finding out when I’ll get married based on my Starbucks order.
I wish I didn’t have to deal with these rainstorms. While they are important for Florida’s ecosystem, they are not an important part of mine. What I need is a cure.
Thankfully, I can watch plenty of videos of dinners that I will never actually prepare.
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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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