Making Stuff

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.

Comments

  1. Patricia Bizzell says:

    I’ve been a friend of Evelyn’s for many years and yet I think I never fully realized how many challenges she has faced until reading this blog. It is so generous of her to share her experiences not only with others who cope with chronic diseases but with those of us who need to understand those challenges better. Evie, thank you for your courage.

  2. Thanks, Pat, for your very kind words.

  3. Jayne Fisher says:

    It’s amazing how you write about something so debilitating with such beautiful prose. Thank you for this little glimpse of what’s inside of you. There isn’t any part of what you wrote that made you sound like a whiner. I can’t wait for next week.

    • Glad to hear I’m in the no-whine zone! One of the real challenges of writing this blog is to find the balance between expressing what I experience in a way that’s honest, that doesn’t mince the difficult details, and sliding into a big gripe session, which no one wants to read. I expect I’ll do some whining at some point, but, I hope, only if it’s justified! Thanks for the encouragement, Jayne.

  4. I came across your blog looking for Scleroderma information because my rheumatologist has reason to believe that I need to see someone who specializes in this disease, but I found your blog to be so much more than just a place for information. Not only is it informative, but it truly does flows like music. I really did not know what to expect if my diagnosis is confirmed, but this blog shows that even if I lose use of my hands, anything is manageable with the right tools. Thanks for telling it the way it is!

    • Hi Pat,

      Thanks for your kind words. I’m very glad that my blog is helpful to you. I also hope you are able to find a specialist who knows scleroderma near you. Take a look at the Resources section of the blog. The Scleroderma Foundation on the East Coast and Scleroderma Research Foundation on the West Coast can help you locate someone good. It’s so important to find a rheumatologist who knows the disease and can help you get the latest therapies. Best wishes on your journey. Be well.

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