Eyes of the Beholder

For those of us with scleroderma, especially women, beauty is a touchy subject. In so many ways, our bodies transform against our will, and whatever beauty (whatever that really means) we may once have had slips through the tips of our clawed fingers and the pores of our too-tight faces. It takes courage to face the world, some days. Other days, wrapped in multiple layers against the cold, one can easily feel invisible.

How I understand my own beauty continues to evolve. Over decades, I’ve come to feel more comfortable in my own skin, tight as it may be around my mouth and over my nose, odd as my stubby, bent fingers may look. At least, most of the time. I cannot describe my face as beautiful in the traditional sense, but it is my uniqueness, and that, I treasure.

Each of us needs to make peace with who we are and how we appear to the world, in our own time, in our own way. I have no magic formula. Saying beauty comes from within is much too glib. Living with scleroderma is a daily challenge of will and determined self-confidence in response to intense social pressures to look young and sexy in our society.

This Monday, I found a surprising opportunity to think about beauty in a different way. I was in Manhattan for a business meeting that ended an hour earlier than expected, just enough time to squeeze in a quick visit to the Cooper Hewitt Smithsonian Design Museum, which is featuring Beauty—Cooper Hewitt Design Triennial. Although the exhibit of international designs focuses on aesthetics in everything from fashion to typography, the introductory text gave me pause. Here’s an excerpt:

Beauty varies among individuals and cultures. Strange or damaged forms transgress the norms of beauty, pushing viewers to expand their expectations by encountering forms that are odd, uncanny, or outlandish.

Yes. We do, all of us with scleroderma, transgress the norms of beauty. We push the envelope, forcing others to expand their expectations of what is beautiful, confronting the world around us in our odd, uncanny bodies. Let us revel in that.

Here are some of are my favorite pieces of unexpected beauty from my all-too-quick visit to the Cooper Hewitt. Enjoy.

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Nail Designs, Tsumabeni, 2016

 

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Dress by Sanne van Winden, Suzanne van der Aa and Michiel Schuurman, manufactured by Vlisco, 2015.

 

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Fashion designer Thom Browne Selects: Exploration of reflections and individuality; mirrors and frames from the Museum’s collection

 

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Necklace (2010), Eucalyptus Brooch (2013), Ring (2013) and Honey Bee Earrings (2014) by Gebrüder Hemmerle

 

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Wall Hanging, “Goliath,” designed by Hezichoo Textiles, 2015

 

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Tapestry, “Nightless Nights,” designed by Kustaa Saksi, 2015

 

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My own “wallpaper” created with digital pen in the Immersion Room

 

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.

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