Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

adaptive tools

Zen and the Art of Saori Weaving

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Back and forth, back and forth, I slide the shuttle that holds the bobbin that’s wound with the thread that creates the weft that fills the warp that blends into fabric I weave by hand, to make up my scarf as I go.

Tonight is my fourth Saori weaving lesson. So far, I’ve learned how to wind my warp (the long, vertical threads that define the width and lengthwise pattern for my scarf), thread one end of the warp through the reed (the metal comb that holds each thread in place, in the order I define), thread the warp tails through the heddle (two rows of wire guides that divide the warp, so one set of alternating threads moves up while the other moves down), wind a bobbin with weft fiber, and pass the weft shuttle horizontally through the warp, shifting the heddle with foot peddles and beating the weft into place. I’ve also learned how to change weft bobbins, how to pick up a second weft color freestyle and how to add “treasures”—slubs of fiber inserted at random for color accents.

It sounds complicated, but it’s actually quite intuitive, once you get the feel of it. And feeling is what Saori weaving is all about.

This modern Japanese weaving method, created by Misao Jo in the late ‘60s, nurtures individual expression and creativity. Saori looms are simpler to thread and manipulate than traditional looms, and they have adaptive attachments to facilitate weavers with disabilities.

Last week, my instructor, Mihoko, added a narrow shelf to my loom so that I could slide my wooden shuttle back and forth without having to hold it—an advantage when my hands get tired. I use a small pair of tweezers that I always carry to manipulate threads in-between the warp. Mihoko helps with knot-tying and other tasks that I find too difficult. The loom is easy to understand, and the parts take little pressure to maneuver. Nothing hurts.

But what I like the most about this new-found art form is the way you can do just about anything with the fibers, within the constraints of interlocking threads. You can leave gaps in the warp or the weft to create an airy pattern. You can interlace new colors and tufts of fiber or cloth or whatever other kind of material you want, so long as the warp is strong enough. You can break a warp thread—by accident or intent—and weave knotted tails of your repaired warp right into the piece.

Mistakes, imperfections—these are what make the fabric personal, unique and fascinating. Accepting and encouraging exploration and individual vision is the art form’s core philosophy. In Saori weaving, flaws don’t exist.

It’s a welcome break from my daily worries about how I’m going to balance my writing and health and all the necessary hard work of building a consulting practice. And a great reminder of the value of taking risks, making mistakes, and staying clear and focused about what’s important.

Tonight, when I pick up where I left off last week, I’m going to shift the weft from dusty roses to slate blues. I’m going to play more with free-style design and whatever else occurs to me in the moment. When I weave, I’m totally focused on what’s right in front of me, figuring it out as I pass the shuttle and shift the heddle. I can only understand the pattern as I make it happen. And I’m doing it with my own two hands.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Making Stuff

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For as long as I can remember, I’ve had cold hands. As a kid, growing up in New York winters, I would play outside making snowmen until I was too numb to feel my fingers and toes. Summers on the Cape, I’d jump in the waves at Nauset until I was blue and my teeth chattered nonstop.

But none of this mattered. I loved to do, to plunge into the world around me. And my favorite means of engagement was through my hands, making stuff. I could do anything with my hands—draw in any medium, do Japanese brush painting, throw pots, make copper enamel jewelry, create tiny origami animals, sew doll clothes and my own, knit, crochet, embroider, needlepoint.

I could also make music, on the full range of recorders; the violin (I was first chair in my high school orchestra and worked my way up to Mendelssohn’s violin concerto); viola; alto, bass and contra-bass clarinet; tenor sax; classical guitar; piano and a little percussion.

When I was about 10 or so, I lay in bed one night, wondering what it would be like to lose one of my senses. I couldn’t decide which I valued more, sight or hearing—but the one thing I knew was that I never wanted to lose touch and the use of my hands.

I could never have imagined the strange shape of my hands today. Decades of severe Raynaud’s have rendered my hand circulation erratic. Scleroderma has bowed and shortened my fingers; the bones have resorbed so much that my hand X-rays look like someone has taken a bite out of each fingertip, and my thumbs are filled with a veritable Milky Way of calcium deposits that erupt through the skin from time to time. I bandage chronic fingertip ulcers twice daily, keep vigil against infections and am constantly reminded, when I try to do something as simple as put change in my wallet at a cash register, that I just need more time than most to do basic tasks.

But I’ve often thought that the fact that I started off with such incredible fine motor coordination has enabled me to continue creating with skill, even as the process is so much harder.

My father had a saying: “Any problem can be solved if you have the right tools.” So this has been my watchword. My drawing pencils each wear colorful triangular rubber grips to cushion my fingers. I’m never without a pair of tweezers, used for everything from picking up beads that I’m threading on jewelry wire to pulling out the bobbin from my sewing machine. I protect my bandages and ulcers with plastic gloves whenever I cook or handle material that’s wet or could be a source of infection.

I can’t play the violin or guitar any more (yes, Doctor, I really did play before), nor a wind instrument, and I find pressing the keys on a normal piano keyboard difficult (even though I still harbor a wish to someday, somehow, learn to play Gershwin).

But I do make music in a new way—through my writing. For me, writing is all about melody, rhythm, assonance and dissonance, crescendos and diminuendos of sounds tied to words tied to thoughts.

And I make visual art through video that I shoot with a simple, lightweight camera and manipulate through the magic of my iMac.

I still miss my hands, even though I can barely remember what it feels like to be normal. Then keep making stuff.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.