Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

beauty

Winter Blooms

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After a bitter cold week, it was a wonderful break to visit the Worcester Art Museum’s annual Flora in Winter show this weekend. Timing could not have been better, and the floral artworks, as well as the museum’s art collection, gave me a boost. I hope some of my favorites here brighten your day, too.

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. Please view Privacy Policy here.

Arts and Flowers

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We’re having a brief respite from the cold before bitter weather arrives once again. So what better time to get a mental and spiritual break from winter than this past weekend at the Worcester Art Museum’s annual Flora in Winter exhibit. Local florists and garden club mavens create beautiful floral interpretations of art in nearly every gallery. Here are ten of my favorites. Enjoy!

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.

Eyes of the Beholder

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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.

Cooper Hewitt 1
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

 

wallpaper eh
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.

Red Sandals

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Right before Passover this past April, I went through my closet and gave away about a dozen pairs of shoes and sandals that I could no longer wear. I’d accumulated them over decades, and each set was a favorite.

But it was simply time to face the fact that the fat pads on my feet have thinned so much from scleroderma that I need a lot of cushioning, and my old favorites hurt. Most of them I hadn’t even considered wearing for years. I had just kept them because I liked them so much.

Hard to part with the shoes, and the idea they represented—that it’s still possible for me to walk with style. Recently, the only shoes I’ve been able to tolerate are two pairs of lightweight, fabric mesh Merrell clogs, navy and black, in which I can insert custom, full-sole orthotics. I’m grateful that these are so comfortable, but they really don’t go well with skirts and dresses.

Of all the shoes I gave away, the ones I parted with most reluctantly were a pair of red sandals with two-inch heels. Nothing like red sandals. They always used to give me a boost, height-wise and mood-wise.

So now, mid-June, it’s finally feeling summery for more than a day here in Central Massachusetts, and no red sandals, no walking sandals, no sandals I could count on for casual wear or work appointments.

I had scoured online shoe sites without seeing anything that seemed worth trying. So hard to tell, and with sandals, the foot sole is key because you obviously can’t insert orthotics.

The only real solution: Go to a shoe store where the staff still know how to fit your feet. This is not easy to find. But there is such a store about a 40 minute drive from home. I haven’t been there in years.

So, with an hour to spare between two appointments last week that took me in the right direction, I made a pilgrimage. The selection hadn’t changed much since my last visit. The show window and displays were full of all the predictable comfort brands, some attractive, some downright clunky.

One would think, with all of us baby-boomer women now at the age of sore feet, that someone out there would approach the question of how to design comfortable, stylish shoes with a bit more imagination. But apparently not.

Round and round the store I walked, picking up possible choices and pressing the foot beds with my thumb. Per usual, the nice-looking sandals didn’t have enough arch support or cushioning. The most comfortable walking sandals were $225 and really, really ugly—like a pair of shovels.

I was about ready to give up and leave when I circled around one more time. There, on the wall, was a pair of raspberry red Dansko sandals—two wide straps of faux snakeskin with silvery buckles on a cushioned, rubbery platform that was styled to look like carved wood, but much more shock-absorbent. Now, I had given away a similar, well-worn black pair, not as attractive, right before Passover, because the cushioning was just not thick enough and they were too loose and caused blisters (probably because my feet are much thinner than when I had purchased them at least five years ago, so they didn’t fit properly anymore, and the footbed was worn out).

But, on a whim, I tried on the sample. It fit. Perfectly. The salesclerk found the mate in the store window, and I took a walk up and down the aisle. No pain. The shoes rolled easily from heel to toe. Excellent arch support. Good cushioning. They even made me stand up straighter, something about the balance of the shoe.

And they were red. On sale.

So I bought them. The salesclerk assured me that I could bring them back within two weeks and get a refund if, after wearing them around the house (not outside), I had any problems.

Over the next few days, I tried them on at different times. Still comfortable. I could do stairs. I could walk on our wooden kitchen floor and on the concrete in the basement.

On Sunday, sunny, full of summer promise, I decided to commit. Out the door, with Ginger on her leash, around the block. Success! Then in the car, over to the art museum, on my feet walking around for an hour to view my favorite works. A little foot fatigue, but still good. No real soreness.

There are probably no ready-made sandals in the world that will ever solve all my issues, but this pair sure gets at thumbs-up for darn near perfect.

Oh, and did I mention? They’re red.

Image: June, 1975—Hydrangea by a Pond, Stencil-dyed paper calendar by Keizuke Serizawa (1895-1984), Worcester Art Museum

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.

Salt and Pepper

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Next month, I turn 59. I’ve reached the stage when I appreciate it if people think I’m younger. One of Emily’s college friends was recently surprised to find out I am not in my mid-40’s. This felt very good.

But twice this past week, I was mistaken as eligible for a senior price break—meaning 65 or older. Now, I’m sure the guy (both times about 30-something, must have guessed I was his mother’s age) thought he was doing me a favor. And both times, the guy made an assumption without asking.

At first, I thought it was just a fluke. The second time, I was really annoyed—insulted and perturbed. What is it about me that gives the impression I’m already a “senior”? (Of course, there is a corollary—if I look like a senior, that’s bad. More on this in a moment.)

The first time, while Al was out of town, I went to the movies by myself on a Saturday night to see director Michael Haneke’s award-winning Amour, a poignant, brutally frank portrait of an elderly Parisian couple whose cultured life unravels as the wife succumbs to a series of strokes. Maybe it was because I was going to a film about aging, maybe because I was alone, I don’t know, but the cashier automatically gave me the three dollar senior discount.

Initially I thought I somehow got a matinee price, which made no sense. Then I realized his mistake. Irked and a bit bemused, I decided to keep the discount. If he was going to size me up so inappropriately, I reasoned, I wasn’t about to shell out three more dollars to correct him.

I’d forgotten the incident by end of the week. Then, the same thing happened. I was at a national writer’s conference in Boston on Friday, having gotten there in a major snow storm and just made it to the registration booth in the cavernous Hynes Convention Center minutes before the first session was to begin. One of the conference staff guided me from the short queue to one of several empty stations. But this one was specifically for seniors. And this time, I spoke up loudly.

“I am not a senior citizen!”

“That’s okay,” he said, “it doesn’t matter.”

Well, it mattered to me. Much as I would have liked the steep discount in the admission price, there is no way I would have tried to finagle a lower fee, even if they hadn’t required proof.

Later, when Al picked me up from the train, I recounted my experience. He laughed.

“It’s not funny!” I protested. “This is when you’re supposed to tell me I don’t look a day over 30.”

“I was thinking you should have tried to get the discount,” he said, still smiling to himself.

I was not amused.

Several days later, I still feel the sting of mistaken identity. Scleroderma has aged me—fewer wrinkles in my forehead and around my eyes than most women in their late 50’s, but deep grooves around my mouth. Usually I’m no longer self-conscious about this, but the week’s events felt like a slap.

At the same time, I’m also questioning my angry reaction to the idea that I might look older than I am. It’s a cultural, ingrained bias: by definition, older women look ugly and undesirable. Not anything true. Ugly, of course, in our society, means diverging from youthful perfection. Which is why scleroderma is such a cruel disease for women, in particular.

But aging, in and of itself, is the natural order of life. And it brings its own kind of beauty. Yes, I’m trying to convince myself as I write, but I actually do believe this more and more, though it’s been hard to accept the physical transformation as my estrogen supply has dwindled.

I don’t dye my hair because I like the way my dark, dark brown is now shot through with silver—salt-and-pepper like both of my parents. I’m still fairly trim and spry for my age and, especially, my medical challenges. I dress as well as I am able. I’m mostly comfortable in my own skin, abnormal as it may be.

That level of self-acceptance is the true source of beauty. I’ve always admired older women who take care of themselves and radiate wisdom, compassion and clarity. It gives them an amazing inner glow. That’s my goal, in any case.

But I’m not fully in synch. Scleroderma has accelerated my biological clock, so my world experience hasn’t fully caught up with my body’s aging.

This is how I sum up my decades, so far:

In my twenties, I thought I had all the answers.

In my thirties, I realized I didn’t.

In my forties, I realized it didn’t matter.

In my fifties, I’ve been putting it all back together.

So my sixties should be great. Just don’t rush me.

Photo Credit: Portrait of an Unidentified Woman, Studio of Matthew Brady, c 1844-1860, Library of Congress PPOC

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.