When I was a child and voracious reader and starting to learn the power of the imagination, I discovered
E.B. White, most well known for Charlotte’s Web. He also wrote a book called Stuart Little. When I first saw that book, my brain read it as “start little”. Even though I know better now, I still say "Start Little" to myself and smile.
I’ve been going through a tough time lately—physically and emotionally my life got turned upside down in late summer—though mostly things are gradually getting better and brighter, at least when I look at the longer trajectory of the last few months. I try to remind myself of that on days that still feel raw and rough, Here are some of the things that have helped.
Start little. Take each moment as it comes and try my best. Don’t try to tackle all of the problems at once or they will seem overwhelming.
Mind-body practices: Guided meditation and somatic tracking have become my good friends. I’ve been doing these things to some extent in the past two years, but I’m only now learning that sometimes I need to do these things for much longer than I thought to notice my nervous system, strange sensations, and tight muscles calming down.
Feeling the feelings. Physical and emotional. Blocking them out doesn’t help. (That said, also don’t try to dwell in the land of the overwhelmed—though easier said than done sometimes. After all, we are human.)
Be Your Own Medicine class. This is so much more than a pain management class. A simple class description from its creator because I can’t think of a better way to describe it: “Harness mind-body healing, neuroscience, somatic meditation and the power of community to heal from the ‘incurable’.” I wish I had learned these lessons many years ago when I first started getting headaches as I dealt with my first major disease (FOP) flare-up that lasted for years and made me feel different from everyone else in the worst way. (And if you are new here, FOP stands for fibrodysplasia ossificans progressiva, an extremely rare disease which causes bone to grow in muscles, joints, and other connective tissue, progressively and severely restricting movement.)
People. I’m not a hugger by nature and can’t give hugs at all—except for the virtual kind. I’ve needed more hugs lately and other reminders that there are people who care about me and want to help.
Gratitude. Particularly in tough times, I hold on tight to the things for which I'm grateful. I find something as simple as naming three things I'm grateful for each day—no matter if they are big or small, helps.
Music. In April, I made a possible playlist to go along with my word for the year, which is possible. I have playlists for each of my one little words (12 now for each of the past 12 years) , and this is the music I am most likely to play. Currently the playlists most likely to be on repeat are grace, rhythm, and courage. Sometimes possible sneaks in, and I hope to get back to it being my main playlist.
Cat game. Some days all I had energy for was a video game I started playing called Simon’s Cat Storytime. I confess I finished the entire story in a month, but each day wove together lessons on people working together, discovering that what we think we know isn’t always as it seems, and well, cats. It was also full of starting over many times as I got points to play the game, lost them all, and had to figure out how to continue making progress.
Extravagant Hope. And when I say this, I’m not just talking about trying to stay hopeful even when life feels anything but. I’m talking about a monthly mailer by Brandi Kincaid that she calls Extravagant Hope, which as she puts it is "the stubborn, making its own light in the darkness kind." Each month’s envelope contains a letter, stickers, postcards, books to read, music playlists, illustrated quotes, pep talks, and other bits of life. I especially love her video walk-throughs where she shares more about the contents each month, partly because I need help to flip through the contents of the package and I can watch the video on my own and partly because Brandi has a wonderfully gentle way with words.
Soundtracks. The stories we tell ourselves matters. Last year I discovered a book called Soundtracks: The Surprising Solution to Overthinking by Jon Acuff. He tells us to ask three critical questions about the words we whisper (or shout) into our own hearts: Is the story true? Is it kind? Is it helpful? Recently the author and his teen daughters (who did the writing) released a book for teens called Your New Playlist when people read the first book and strongly felt there should be something similar for a younger audience. I’m with them. I became an overthinker in middle school when the disability I live with became more of a force in my world. It was my way of dealing with life when I felt confronted by things no teen should have to deal with. I wish I had a book like Your New Playlist. I’m well out of my teen years, but it is what I’ve recently been reading.
Red glitter shoes. Okay, this one is a bit more metaphorical, though I wish I had a pair of red glitter shoes like Dorothy. Well, truly I would want fuchsia ones, but I’m getting off track. When I was younger, I would watch The Wizard of Oz when it came on TV—before the days when you could have your own copy and watch it anytime you wished. Back then and to some extent even today, I thought it was a very scary movie at times, much as life can be. In the end Dorothy learns that the power was in her all along. I’m trying to learn that.
Hello. My name is Sharon Kantanie. I'm 52 years old. I have an extremely rare disease called fibrodysplasia ossificans progressiva. I believe in courage, kindness, and other things. Welcome to my little home on the world wide web where I hope to share information on the Kindness Matters Challenge, my life, and the things that matter most to me.