Creative collaboration brings together my SMA support network
Throughout the summer, my favorite pastime is just to be outside, for long walks, porch talks, picnics — any reason to bask in the sunshine. But as the days get cooler and shorter, I prefer to be inside and find crafty things to occupy my time. Over the years, I’ve dabbled in a variety of projects, from knitting to coloring to cross-stitching to scrapbooking. I love to create all things small, colorful, lovely, and tedious!
But because I have SMA, my muscle weakness progresses over time, which means my abilities change, too. In the past few years, I’ve lost more strength in my hands and arms, so some of the crafts I used to do are much more challenging or even impossible for me to do anymore. But then I remember that creativity is not just what our hands are capable of, but what our imaginations can conceive. And my crafting ideas are only limited if I try to do them alone.
Once again, I am learning the valuable lesson of asking for help from others. However, there is a world of difference between trusting someone to wash my hair and inviting someone to assist me with my artistic self-expression.
A couple of years ago, I heard some artists speak at a conference about “creative collaborations,” projects that multiple creators work on together, like animation teams or theater companies. There are challenges in working collaboratively; for starters, you can’t expect the end product to turn out exactly the way any of the participants originally envisioned it. Everyone must sacrifice, compromise, and contribute for the sake of the art, not just the artist.
But on the flip side of that, collaboration brings its own beauty and power to the art — it can become so much bigger and better when more people are involved, because it is complemented by each person’s unique perspective, skill, and strength. Can you imagine how limited animated styles and stories would be if Walt Disney had insisted on doing it completely by himself? What if Richard Rogers and Oscar Hammerstein stubbornly refused to work together? And as brilliant as Jim Henson was, would The Muppets be as wonderful without the talents of people like Frank Oz and Don Sahlin? And if these geniuses needed help, then it is OK for me to admit that I do, too.
A connected heart
My most recent creative endeavors involve using a Cricut Maker 3 and navigating the world of iron-on vinyl and infusible ink. I can create designs, buy supplies, and watch tutorial videos, but my hands and arms are not strong enough to actually do the tasks needed to make anything. So I have invited friends over to switch out the blades and pens, peel paper off the sticky mats, and operate the heavy heat press. With our powers combined, we are making some amazing products!
“Connections,” a collaborative string art piece by Connie Chandler and her caregiving friends. (Courtesy of Connie Chandler)
Last year, my caregiver team and I made a very special collaborative art piece that I call “Connections.” It is a piece of wood with small pegs nailed into it and arranged in a big heart shape, with another scaled-down heart shape in the middle. We wrote my name in the smaller heart, and my caregiver friends’ names beside the outside pegs.
I had a bag full of embroidery floss of all colors, so each friend picked their own unique color and tied it to their peg. Then they stretched the string from their peg to the center heart and back again, to symbolize their connection with me. But that wasn’t where it ended! Then they stretched the string around the board to the names of other people they are connected to — friends from church, work, school, or the neighborhood. Some people had one or two connections, and some wove their string all over the heart. There were even some surprises, as people realized their second cousin or a long-lost high school friend was part of the team!
This string art hangs on the wall in my living room, in all its colorful chaos, and reminds me daily of the remarkable and elaborate ways God has brought us together. It is a display of the supportive community I have around me, but also of how the members of my team support and care for one another. We need each other, and when we come together, life becomes more complex, more enriched, and more beautiful. And I’m so glad none of us have to do it alone.
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.
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