Being Silly and Creating Memories Can Make Life With HD Bearable
An aunt's advice to her nephew shares hard-won wisdom from her illness
The other day, my wife, Jill, shared some life advice to our 25-year-old nephew, Dylan, who’s living and working in a monastery in Eastern Europe, trying to figure out what he wants to do in his life. He’s got many gifts. He’s a talented artist and musician. He loves to teach English. He also loves God, so he’s contemplating getting a master’s degree in theology to teach religion. But ultimately, he wants to be happy.
When he was younger, Dylan thought about becoming a doctor because it would offer him financial security. In a text to Dylan, Jill affirmed his desire to be happy.
“You can go for a job that pays a lot of money,” she wrote him, “but that money isn’t ever going to be enough to make you happy.”
Life is short
Jill often told our daughter, Alexus, when she was growing up that if she decided she was happy working in a coffee shop and playing the guitar, then do that.
“I’d rather her be poor and happy than rich and miserable,” Jill wrote Dylan. “I think you and I have a unique understanding of the term, ‘life’s too short to be unhappy.’”
Jill was referring to the fact that Dylan’s mother — my sister Rose — was tragically killed three years ago at the age of 58. A tree uprooted and fell on the car they were sitting in during a terrible storm. It caused Rose traumatic brain injuries and severed her spinal cord. She died that evening in the hospital. He was unhurt.
Sadly, my wife’s understanding of how short life is comes from the fact that multiple people on her father’s side of the family, including her dad, were afflicted with Huntington’s disease (HD) and suffered a lot before dying. In addition to Jill being gene-positive for HD, our daughter, Alexus, is, as well.
Make time for the silly
Because Dylan’s demeanor can often be serious, my wife suggested he do some silly things.
“The reason I say do something silly isn’t just for a laugh,” she wrote. “It’s to break up the day, or break out of what I call ‘a thought loop’ – worrying about or reliving a trauma. I’ve had a lot of that. And it makes you feel silly, and that helps take life less seriously and eventually it boosts your serotonin.”
Serotonin, often dubbed the feel-good hormone, is a neurotransmitter that acts as a mood stabilizer or booster and is said to produce healthy sleeping patterns, as well.
“When Alexus was born, I was a very different person,” she wrote. “I was angry and sad, and I don’t think I could have explained what happy felt like. Meds help, but I needed to not be that way with her, so I started doing things that didn’t come naturally. One of which was be foolish, sometimes for no reason. It’s not the only thing I did, but it’s how I started the path I’m on.”
When Alexus was a child, one of the foolish things Jill might do would be to jump on top of puddles of water with our daughter, which, as any parent knows, causes water to splash and usually leads to squeals of laughter from the child. Jill would also smile and laugh.
The importance of making memories
The reason why I’m sharing all this is simple: Jill’s advice makes sense. Life is never easy, especially for those suffering from HD and their caregivers. But it can be transformed from the thought loops of sadness, anger, or bitterness, which are often prevalent in HD families, into ones of seeing the opportunities for joy through silliness.
It’s these little things in life that can make it bearable, despite the sadness. Though making money is important, Jill prefers to be rich with memories and love, such as being with family members as often as she can.
Here’s how she ended her recent text to Dylan.
“Alexus and [her husband] René will be here mid-December, so we are stoked. We see them a lot more since we moved here (to the East Coast), so I’m grateful we did. Alexus always makes an effort to see us, so we are happy when she does. I guess knowing I have a limited time before my HD gets worse helps us remember to go the extra mile to see each other.”
See each other more. Be silly more. Be rich in love. Jill’s advice made sense to Dylan. I hope it makes sense to all who are in the HD community.
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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