Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

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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.

That’s a Wrap

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23924473493_f89d1e0822_zWould someone please explain to me why a cucumber requires shrink wrap? I’m talking about English cucumbers, the long ones that have a very crisp texture and fewer seeds. Their skins aren’t as tough as regular cukes. But shrink wrap? Really?

I hate that shrink wrap. It is next to impossible for me to strip it from the cucumber. My fingers just can’t grip that well. And it clings so tightly, the harder you pull, the more it resists. Honestly, all I want to do is make a salad. Why does it have to be so difficult?

Here are some other food packaging items that drive me crazy:

The plastic film covering, beneath the lid, that clings to the rim of sour cream tubs and yogurt containers. (Those plastic lids aren’t so easy to pry up, either.) I usually have to grab a knife to slit them open, because I cannot grasp the longer edge you’re supposed to use to strip the film away.

The tight foil covering of my calcium chews. These come wrapped individually, with neatly turned ends that are folded the way you wrap a birthday present. Picking those ends up with what’s left of my finger nails takes patience, to say the least.

Plastic screw tops with perforated extensions that twist off when you first open the jar. Usually, I need to wear a pair of rubber dish gloves to be able to hold on without my hand slipping and twist without injuring my skin. I have an adjustable jar opener, but it doesn’t always do the job as well as it should.

Sealed plastic bags for items like shredded cheese that have molded ziplock seals. The idea is that you can reseal the bag after you open it the first time. Problem is I can never pry apart the ziplock, so I inevitably cut it off and put the bag in another plastic bag with a usable ziplock—or just use some other clip to keep it shut. Just give me a bag that opens easily, please.

Sealed plastic wrappers inside sealed cereal or cracker boxes. I can never, ever, pull them apart neatly. It seems like these wrappers used to open easily, but now they are made of some kind of heavier plastic that just won’t yield to my fingers. So I usually ask Al to do it for me.

He, of course, is my secret weapon for all of the above and more. Sometimes I wonder if I depend too heavily on my husband for help with all of these simple tasks. I know I should find more adaptive tools to tackle hermetically sealed packaging. But then I have to have those tools handy every time I try to open something. Which is a nuisance.

Some days, like the other night, when I was rushing to make dinner and had to keep struggling with food wrappers, it’s just plain tiring. And wasteful. I do my best to recycle, but some of that packaging has nowhere to go but the trash. We live in a litigious, germaphobic culture where shrink-wrapped cucumbers are the norm. Even if my hands worked perfectly, there has to be a better way.

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.

Image Credit: Ajax Great

Forward

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The maples on our street have finally shed their chartreuse flowers, unfurling palmate leaves, catching raindrops all last week. After too many days of dreary chill, the view is lime green. It finally feels like spring has arrived—dare I say—for real this time.

Violets sprinkle our grass. This seasonal reawakening is a favorite of mine, a time of new promise, fresh beginnings.

IMG_0500 (1)Emily graduated with her master’s in higher education last Thursday. Her goal: working in university disability services, helping college students with physical, emotional and learning challenges to succeed in their academic careers.

Her preparation has been far-reaching, a rich combination of academics and hands-on experience that began while she was still an undergraduate, touching on many aspects of student activities. This past year, among other involvements, she coached college students who were trying to overcome all kinds of obstacles to academic success.

Em has taken inspiration for her career goal from many sources and experiences—but one wellspring has been watching me deal with my scleroderma. We’ve had long conversations about this over the years (she has never known me without damaged hands), and she’s had a front row seat for my struggles and quest for creative adaptations. If ever there was a silver lining for my disease, Em’s career goal is certainly that and more.

Another part of her goal: to help build inclusive communities on college campuses that reject the social stigma of mental health issues and physical impairments. This is not an easy task. She began this effort as an undergraduate, and now it is, for her, a foundational aspiration.

Why higher education? Because colleges and universities are places where many young adults start to make choices of their own and define their values. The college years are a time to explore ideas and choose new personal directions. The university, at its best, creates an environment where conversations about important societal issues—such as how we treat others who are different from us—have significant potential to shape social attitudes in the future.

Idealistic? Absolutely. I wouldn’t want her to be any other way—even as disappointments down the road are inevitable. We can never make progress toward a world where people are accepted for all that they are, rather than rejected for all that they are not, without idealists like my 24-year-old daughter.

With Emily’s graduation, we no longer have any children in school. Both of our daughters have chosen the helping professions, tackling tough societal issues in an effort to make the world a better place. Dark as the future can seem these days, with so much at stake politically, environmentally, socially—here and around the globe—I am inspired by their commitments.

This Mother’s Day, I could not have asked for a better gift.

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.

Sounds of Silence

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I should be over my rotten cold by now. It’s been more than a week, for crying out loud! For those of you who read last week’s entry, I’m happy to report that my childhood friend was happy to get together for a rare Boston visit, despite my emerging symptoms. But by Thursday, I tanked. Not only was I sneezing and coughing. I lost my voice.

The timing couldn’t have been worse. We had a big weekend, celebrating one of my brother-in-law’s 70th birthday, with family visiting from all over the country. And I wanted to be there, and I could not just sit there. So I whispered and croaked through conversations. We hosted my other brother-in-law and one of his daughters as house guests, and both Mindi and Emily were home, too. It was great. Except I really shouldn’t have been using my voice, and I probably set myself back several days.

So now I’m doing my best to keep silent. This is not easy for a woman who is very verbal. On the one hand, it’s been a blessing to have a quiet house to work in so far this week. I can express myself via email and text messages and writing for clients, as well as through my own creative writing.

On the other hand, I can’t talk on the phone with anyone or conduct a meeting or get together with a friend or have a simple conversation with Al. Every time I speak, he tells me (with more than a hint of pleasure) that I need to rest my voice. He’s right, of course. There is no way to heal laryngitis other than silence. Even whispering is damaging (as Emily informed me via an article from Scientific American).

So over dinner Monday night, I wrote Al notes on a yellow pad and he spoke in response. Interesting way to communicate—totally different rhythm. At least I didn’t have to repeat myself. I wish I knew sign language.

I’m experiencing silence at another level, as well, because my left ear is blocked up. Even as my sinuses are finally clearing, my ear is not, yet. So external sounds like music on the radio are a bit muffled, although certain soft noises are quite clear (a dripping faucet, crinkling paper). And eating or brushing my teeth is amplified—as well as my tinitus. The ringing is really loud.

Scleroderma adds a layer of complexity, of course. Since I have Sjogren’s syndrome, I have to think very carefully about how to use decongestants, trading off the boomerang risks of nasal sprays with the discomfort of making dry mouth worse at night. Too much oral decongestant sets off my Raynaud’s. Adhesive nasal strips at night help my breathing but can irritate the delicate skin on my nose. Most of all, I need to do whatever is necessary to get a good night’s sleep. On and on it goes. Hard to be patient.

Fortunately (I certainly hope), my voice and hearing loss are transitory. But it surely makes me appreciate the challenges that those who live with permanent speech or hearing impairments have to deal with every day. I’m also very grateful to be able to work for myself at home and not lose income because I can’t report to an office setting when I feel this way.

Okay, enough complaining. Thanks for listening, Dear Reader, and may you avoid a rotten spring cold of your own. Be well.

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.

Image Credit: David Di Biase

Swell

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I turned 62 on Monday, one of those in-between birthdays that aren’t a major milestone. But this time around, instead of wrestling with the feeling that I’m just getting older, I decided to do something I’d never done before. Every year is a chance to experience new things. Despite living an hour’s drive from the Atlantic, I’ve never been whale watching, and I’ve always been curious to see live whales in their ocean habitat.

The season opened this past weekend, so we planned a trip for Sunday. I found a great company, a family owned business in Gloucester that has a marine biologist as a tour guide and that participates in whale conservation efforts. I found a discount coupon online. I found a nice restaurant nearby. The weather looked promising.

Only one glitch—when I called about reservations, I learned that there were going to be gale force winds off the coast on Saturday (despite great weather here), so it was best to check back on Sunday morning to find out if the waves had eased. Fortunately, the report was promising on Sunday—still swells, but okay for sailing—so we set out for Gloucester.

We made it with minutes to spare before departure, after getting lost along the way. But the sun was shining, everyone was helpful and friendly, and we found a good seat along the starboard side of the ship. I came prepared with all my winter gear—warmest coat, hat, mittens, leg warmers—to beat the sea breeze chill. As our ship powered beyond calm Gloucester Harbor and began to hit some swells, I was fine, enjoying the ride, like a kiddie rollercoaster.

It took about 45 minutes to arrive at the edge of the Stellwagen Bank National Marine Sanctuary, where we had a good chance of seeing humpback whales feeding. Sure enough, as we drew closer, our guide informed us that there were at least two humpbacks off the port bow at about 11 o’clock. But when I got up with Al to move around and take a look, all of a sudden I felt terribly dizzy. I immediately sat back down and tried to regain my bearings, but the ship was dipping and swaying. I felt just awful.

Fortunately, one of the crew saw me and offered to help me walk to the stern, which was more stable, and sit down. She brought me a small cup of ginger ale, half a Saltine and a plastic bag, just in case. Al was right by my side. To my surprise, the food actually helped a bit (neither of us had eaten more than breakfast, and the fact that we’d arrived so late precluded any lunch—a good thing, as it turned out).

But I was still very dizzy, so we found a space on the starboard bench, and I lay down with my head in Al’s lap. The whales, however, remained on the port side. Not an auspicious beginning to our expedition. Then they swam under the boat and began to spout near enough so I could lift my head and see. With a graceful flip of their flukes, they slipped beneath the waves. We were able to note the distinctive black-and-white patterns on the flukes’ undersides, which, our guide explained, is as unique to each humpback as a human fingerprint. These two he recognized from file photos as Mend and Evolution, familiar visitors to the Stellwagen Bank.

I felt badly about depriving Al from seeing the activity on the port side, but he reassured me we didn’t want to try to move over there. Two big, beefy guys were losing their lunches. Later, we learned that we had been in the midst of eight foot swells. Lots of people got sick. So I actually held my own better than I’d thought.

As our ship motored to a better viewing location, our guide explained more fascinating facts about humpback whales—including that it’s the males who sing, and that their songs are unique to each breeding ground. One whale will start singing, and then another picks up the melody and modifies it a bit, to demonstrate his prowess to the females. This continues throughout the breeding season like a game of telephone, so by the end of the season, the whale song is completely different.

I closed my eyes (which helped my dizziness) and did my best to relax with the boat’s rocking, which also helped, and listened to the guide’s narration. Then, our tour group got lucky. A juvenile humpback breached halfway out of the water and flopped back. Of course, it was on the port side. But then the whale (we dubbed it Hubert Humpry in honor of this presidential election season—yes, we’re dating ourselves) swam toward the bow and breeched again. This time, I managed to stand up on tiptoes, hugging Al tightly to steady myself, to see the action.

Our guide explained that humpbacks breach for four reasons: to rid themselves of parasites, like barnacles; to help their digestion; to signal other whales with the sound of their hitting the waves (sound travels farther under water); and to play. Hubert, I decided, was definitely playing, because he was putting on quite a show, smacking the waves with his huge flipper and breaching at least a half dozen times, all around the ship. Magnificent.

Between the two of us, we managed to capture it on video. I include the edited version, above, for your enjoyment. (If you can’t see the embedded video, click here for another view.) But there is nothing like seeing these extraordinary creatures in person—even risking motion sickness to get there.

There is so much to learn, to see, to do. I’m 62.

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.