Finding Beauty in the Dark of Winter

Finding Beauty in the Dark of Winter
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“I forgot how dark it is all the time,” my brother commented when he visited us in Michigan’s Keweenaw Peninsula over the holidays.

The sun was trapped behind cloud cover for the entire week he was here, and some years, it only peeks out occasionally during January with near daily lake-effect snowfall.

Days of gray can wear on a person, and winter is far from over.

Nonetheless, social media feeds resound with happiness and ambition. “I’m glad to leave the craziness of 2020 behind,” a friend said. “Looking forward to a better year in 2021.”

I heard many people — at least those who aren’t living with ALS — express similar sentiments. COVID-19 vaccines are rolling out, and people around the world are hopeful that life will get back to normal in 2021. Sadly, some will need to find a new normal after having lost loved ones.

I, too, will be relieved when the pandemic is over, because my husband, Todd, is at high risk with his breathing compromised due to ALS. And if I get sick, who will take care of him? But until there’s a cure for ALS, there’s no getting back to life as normal for those with a disease that keeps taking. Instead, we’ll need to find a new normal, again and again, in each stage of decline with the disease.

For those declining with ALS, 2020 was as good as it gets. We face a 2021 that will be harder. It’s like we’re living in perpetual winter.

So, I’m hunkering down hygge-style. I’ve been burning candles in my Iittala Festivo candleholders.

My Iittala candleholders. (Photo by Kristin Neva)

Hygge” is a word the Danes use for being intentional at creating coziness to promote well-being. In many Northern regions with short daylight hours during the winter, people have learned to cope with the darkness with special recipes, fireside chats, saunas, warm apple cider, and candles. The unique, ice-like textured surface of the Iittala Festivo holders has been an icon of Finnish elegance for 50 years.

My aunts gave Todd and me the glass, four-ring candlesticks as wedding gifts 17 years ago. My mom later added to my collection by giving me three-ring and five-ring variations. She also gave me several sets of the footed ball candles that were designed for the holders.

I burned tapers occasionally, and I had only displayed the footed balls decoratively for years because they’re not readily available. But this holiday season was so tough and isolating — no school Christmas concerts, no Christmas Eve candlelight service, and saddened by the recent passing of Todd’s father — that I lit my special footed ball candles.

Since then, I’ve been on a candle-burning frenzy. I ordered Swedish teardrop candles from a specialty gift shop, and I picked up two-for-$1 tapers from the dollar store. I burn candles daily. The light brings warmth to our kitchen and to my soul.

If we are to live in a dark, perpetual winter, we must find and create beauty.

***

Note: ALS News Today 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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