Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Around the Block

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I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.

Social Graces

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Who ever invented the practice of eating at a party while you’re standing up? I enjoy social gatherings with friends and family for special occasions, but I am a klutz when it comes to balancing hors d’oeuvres plate, napkin, utensils, plus a drink, all while milling about in a crowd and chatting.

It’s gotten to the point that I often stick to just a glass of wine or seltzer, and pass on the finger food. I can’t eat without drinking, or I risk problems swallowing. And I can’t manage the plate and the drink with my hands, and still eat, without risk of dropping everything. As for the finger food, with so many bandages, I don’t like eating with my hands, anyway, especially if the food is drippy or the least bit oily.

This is not the most serious problem in the world, certainly. But it is a challenge, and I do feel awkward unless I can find a place to sit and enjoy the nosh, or at least one of those high tables that are designed for standing and eating at a party.

Portable food courses are, I suppose, just another way our casual lifestyle finds expression. Why be constrained by formal seating arrangements when it’s fun to mingle and eat at the same time? When I was younger and my hands worked, this was fine.

But the older I get, and the less nimble my hands become, I really do prefer a sit-down meal. Even party buffets, when you take a plateful of food and find yourself a seat on the couch or a chair, create coordination challenges. Balancing a plate on my lap while trying to manipulate knife and fork, especially if they are made of plastic, is a recipe for a spill. It’s hard enough to grasp the thin plastic utensils, let alone apply enough pressure to cut food with the so-called knife, without sending the food skidding onto my good clothes or the floor.

That said, my solutions for party-eating logistics are as follows:

  • Don’t load up your plate. Less to cut, less to spill and, of course, less risk of overeating.
  • Find a quiet corner where you won’t get jostled while you eat. This also addresses a second issue having nothing to do with scleroderma and everything to do with aging—I have increasing difficulty hearing what someone is saying when there is a lot of background noise.
  • Even better, find a seat in a quiet corner with a table where you can rest your drink while you eat.
  • Best of all, invite your closest friends at the party to join you in your above-mentioned quiet little corner. That way you can enjoy your food, your drink and a good conversation. If you spill something, your friends won’t care. And they’ll help you clean it up.

Image Credit: Le Sortie de l’opéra en l’an 2000, Albert Robida, c. 1882, Library of Congress Prints and Photographs Division, courtesy publicdomainreview.org.

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.

Futurecast

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I wore my long winter coat this weekend. Not the heavy-duty one, but the medium weight, good-for-when-it-gets-below-50F-degrees-coat. And a warm hat. And gloves.

Book of SnowflakesIt’s only the beginning of October, but I’m already pulling out my sweaters and sweatpants, fleece vests and scarves, wool trousers and skirts, as the temperature sinks. This is always the time of year when I feel a bit self-conscious about bundling up while my neighbors are still walking around outside in windbreakers. But I’d rather be warm and keep my hands from turning purple and numb.

According to the Old Farmer’s Almanac website (is it just me, or does that sound like an oxymoron?), this winter in New England will be “much colder than normal, with near-normal precipitation and below-normal snowfall.” Looks like we’re in for a bit of snow before the calendar year is over, then just a lot of frigid temperatures until mid-March.

That is, if you believe the Almanac’s predictions. They claim 80 percent accuracy.

We were discussing this with family and friends at Al’s cousin’s home over the weekend. Those who commute by car and park on city streets were rooting for the Almanac—less to shovel sounded pretty good after last winter’s snow emergencies. For me, however, the words “much colder than normal” are more forbidding than snow storms (until the snow piles so high there’s nowhere to put it).

My winter weather trepidations are tempered by living in a landscape so romanticized by Currier and Ives. New snow is beautiful. It’s clean and sparkly and magical. I always enjoy the mystery of the first snowfall of the season, how it transforms trees into spun sugar.

Nonetheless, snow, by definition, means the temperature is below freezing, and my body just doesn’t adjust easily to the shift. We’re not there, yet, but as I walked Ginger, our 16-year-old golden, around the block on a sunny, crisp fall afternoon this Sunday, I could feel the season’s change in the wind.

Was it still, technically, summer just about a month ago? I have more digital ulcers, more bandages. I’ve turned on the heat pumps to warm the first floor of our home while I write in my small office, just off the living room. I’m wearing long sleeves and a warm cardigan.

Snow or no snow, the idea of “much colder than normal” sends shivers throughout my body. Nothing to do but make sure I have enough layers and brace for whatever winter weather lies ahead. At least we still have the best of the fall foliage to enjoy for the next couple of weeks.

Would I ever move to a warmer climate? I don’t know. I love my home, my community. Much as I struggle with the temperature shift each fall (spring brings its own unique challenges, too), I love all four seasons here.

So, pile on the sweaters and boil up the oatmeal. Colder weather? Bring it on.

Image Credit: Illustrative plates from Snowflakes: a Chapter from the Book of Nature (1863), a collection of poems, extracts, anecdotes and reflections on the theme of snow and the snowflake.  See more: http://publicdomainreview.org/collections/illustrations-of-snowflakes-1863/.

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.

Fine Tuning

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During this past week, amidst so much bad news—the spread of Ebola in West Africa, the sudden eruption of Japan’s Mount Ontake that killed dozens of innocent hikers, the escalation of air strikes against ISIS in Syria, wildfires on the West Coast and more—I have been singing.

I highly recommend this as an antidote to scary headlines and other depressing thoughts.

In particular, I sang alto in a quartet accompanying our cantor and choir for Rosh Hashanah last Thursday and Friday. We’ll sing again this coming weekend, when Shabbat coincides with Yom Kippur. So we have another rehearsal this Thursday night.

This is a good thing. It’s wonderful to have the beautiful melodies of the High Holiday liturgy circling around in my head, blocking out all the bad stuff.

Services were lovely and uplifting, but it took quite a few rehearsals for me to feel really good about singing again. It’s been at least 10 years since I participated in a High Holiday choir, and I’ve never been part of the quartet. So it was a bit of a shock when we began rehearsals about six weeks ago to realize that I had gotten quite rusty. Despite more than a decade of playing instruments and singing in choirs, when I looked at the sheet music, I could not recall the names of all the notes.

Understand that I played violin for 11 years and was concert mistress in my high school orchestra.

What was happening to my brain? It actually scared me. Early signs of dementia? Age? Fatigue? Some crazy aspect of scleroderma? I didn’t know.

With practice, thank goodness, the notes came back, and by our second rehearsal, I began to regain my ability to sight-read.

A second challenge, however, was tied to scleroderma and its nasty partner, Sjögren’s Syndrome. Although I can still vocalize well, my range is more limited than in the past (I used to be able to sing second soprano as well as alto), and sometimes the notes come out warbled or off by a half-step, because my mouth is dry and I can’t always control my swallowing or how my throat opens.

I figured out how to compensate for some of this by remembering to breathe from my diaphragm, rather than straining my throat to sing louder. But I do have limits. I need to breathe more often, breaking phrases, because my lungs just won’t hold enough air. And if the group goes flat, I cannot hit the low G. Impossible.

I was feeling a bit awkward about all this, wanting to hold my own in the quartet. But then I realized that I had better fill in people, so they would understand and I could do my best for the group. Both the tenor and bass are physicians, and all are friends, so when I took the leap and explained about my health-related issues, everyone was quite supportive. This was a relief. I no longer felt self-conscious, and I certainly enjoyed singing all the more.

We received many compliments after services, how our voices enhanced the experience for the congregation. And we loved singing together. Once we learned the music, we enjoyed the added, serendipitous benefit that our four voices have natural resonance. Truly a delight to harmonize.

So I’m looking forward to our Thursday night rehearsal and to singing once again this weekend. And I hope our quartet will find more opportunities to sing together. The world is overflowing with bad news, and I don’t want to lose those notes again.

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.

Photo Shoot

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On my desk, next to my computer screen, rests a black-and-white photo of me at age three, my braided hair in white satin ribbons. I’m wearing a plaid dress with puffed sleeves and a white Peter Pan collar, holding what I think was a stuffed toy deer, sitting in a folding chair in the back yard of our home. Like most little kids, I loved having my picture taken, and I’m grinning happily at the camera.

Not so, now. I don’t know at what point I began to hate having my picture taken. Probably sometime around the seventh grade when, like most teens, I started to feel too self-conscious about my facial flaws. Many women I know feel this way—we’re all far too aware of our imperfections in a society that values Photoshopped perfection.

But scleroderma adds a whole new level to my camera shyness. Recently, I needed an updated portrait. So I asked a friend who’s a good photographer if he would do the honors. We did the shoot outside in about 10 minutes, as he zipped through digital shot after digital shot and kept me laughing.

The next day, he sent me a set of images to review, most of me grinning at the camera. But as I scrolled through, my heart sank. Oh. My. Even after all these years with scleroderma, it is really hard to see how it has distorted my face. Friends who know me don’t notice, because I’ve had the disease for so long that the way I look is all they know.

But for me, it is still a shock. Although my skin has loosened somewhat with time, excellent medical care and a dose of serendipity, it remains abnormal. My wrinkles are not the fine lines and soft creases of my 60-plus contemporaries (even as I’m grateful to have wrinkles, because when the disease was worse in my 30’s, my face was tightening to the point that it was uncomfortable to blink). Rather, because my skin is still thickened, my wrinkles resemble corduroy welts of varying widths. My mouth is tight around my broad smile. The nostrils of my generous nose are narrow. My eyelids are too thick to open fully.

In short, I look a whole lot older and odder than I think of myself. I don’t care about the salt-and-pepper hair. I still have my teeth (well, at least, most of them). Maybe it was the natural lighting, which can be quite unforgiving. But. Wow.

One of the hardest things about this disease is how it damages your looks. It is deforming. There is just no way around it. When I look at myself in the bathroom mirror, I often am not wearing my glasses, so the impact is softened—a bit of self-delusion, perhaps, but it also makes me feel better.

The reality is, I’m always still hoping against hope that I’ll get my face back. I wonder what I’d look like without scleroderma, just normal aging. What would it be like to once again have a relaxed mouth, a nose that isn’t pinched, eyelids that open all the way? What would it be like to have gentle lines rather than deep creases?

I know this ruminating is both self-defeating and self-absorbed. Beauty is only skin deep, and all that. But there is a real loss involved here, and it takes a long time to make peace with the fact that scleroderma ages you prematurely and is so unkind to whatever lovely features you may have once had. You need to dig deep to summon self-respect and compassion for who you are, for all that you are, despite damning social standards.

In the end, I selected the most forgiving image and forwarded it on. The pictures told the truth. This is how I look. The contrast between what was and what is remains in my head, and those whom I love and who love me don’t care.

Friday evening, I sat on the living room couch as Al gave me a much-needed neck massage—too many hours at the computer. I told him about the photos. “I look so old,” I said, discouraged.

“You don’t look old to me,” he answered, softly. For some men, this would be a throwaway line. But not Al. He meant it. And that made all the difference.

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