The ‘boondledorf’ and ‘moots’ that make up my winter survival guide
I bundle up when I go out, and have people over when I stay in
Written by |
This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season.
The cold tightens my muscles, it is all too easy for me to get sick, and my wheelchair struggles to navigate snow, ice, and muddy slush. I would rather curl up with a blanket and a cup of tea and hibernate like a bear. Let me sleep for three months, and you can wake me up when it’s over.
The thing is, I need my community. I need them in a very practical sense for my physical caregiving, but I also need them for connection and for my mental and emotional health. If I learned anything from the bleak isolation of COVID-19, it’s that I cannot survive loneliness, separation, and being homebound. I need to get out, and I need to invite people in.
Sweet Moot!
Several years ago, my caregiving friends and I coined a term: “boondledorf,” which means “bundle up in all the things.” For me to go outside in below-freezing temperatures, we have a whole routine that involves many articles of clothing and accessories. This is to aid blood circulation in my hands, feet, and legs, and to shield my chest, neck, and face from the icy wind that harms my respiratory health.
I wear knee-high compression stockings, then fluffy socks, then fleece-lined boots that zip up on the ankles. Long pants like jeans or fleece-lined leggings cover my legs. A fuzzy sweater paired with a camisole or fitted T-shirt keeps my top half cozy and warm. And this is my inside attire!
Outdoor accessories include a scarf that covers my neck and the lower part of my face, and a knitted hat that covers my ears and the upper part. Then we add fleece-lined gloves, which are complicated, but necessary. Getting all the fingers into all the right spots is tricky, but I’ve found that gloves make it easier for me to drive my chair than mittens.
The last piece to add is a fleece or furry cape. My mom has made three of these for me in various colors and styles — long drapes of fabric that have Velcro on the ends, so my caregiver can easily wrap it around my shoulders and stick it closed in the front. That way, they don’t have to wrangle my arms into sleeves and squish a coat in, all around me.
Of course, style is absolutely essential, too, and my family and friends are always gifting me scarves, hats, and gloves that are colorful and cute, so I have a diverse supply to mix and match!
Another term we like but did not come up with ourselves (it came from J.R.R. Tolkien’s “Lord of the Rings“) is “moot,” which roughly means “a regular gathering for a common purpose.” And so, my second solution to surviving the winter is to host moots at my house.
I invite one, two, or 20 friends over for a special purpose: crockpot dinners (Soup Moot), experimental baking adventures (Sweet Moot), jigsaw puzzle parties (Puzzle Moot), movie nights (Movie Moot), jam sessions (Music Moot), or read-aloud rounds (Book Moot).
Moots make the time pass quickly and joyfully, because we’re busy creating and experiencing things together. And I don’t even have to boondledorf to do a moot in my own warm, dry, cozy house. Although I guess we could have a gathering to put on all the clothes: Boondledorf Moot!
I’m thankful that winter doesn’t last forever. Some days, especially in January, it feels like it will, but I know that eventually the temperatures will rise and green things will grow again. Until then, I will bravely and creatively press on, and I hope you will, too.
Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.