Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Vacation State of Mind

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It was blazing hot last week here in Massachusetts—‘90s and high humidity—too hot, even for me, once again this summer. On the plus side, however, we were also on vacation, hanging out at home and doing day trips. Perfect weather for the beach.

Only one problem: I can’t swim in the ocean with ulcers on my fingers. Too much risk of infection. So we just spent one day, last Monday, a real scorcher, at the seashore. The water was wonderfully warm, and I was able to wade up to my thighs, the next best thing to swimming.

For the rest of the week, we escaped the heat and humidity by playing tourist in our own backyard and immersing ourselves in history—from dinosaur bones to the Dead Sea Scrolls, from Emily Dickinson’s reclusive world to whaling ship lore.

One evening, we watched a classic 1921 Swedish silent film, The Phantom Carriage, with live piano accompaniment. Two other nights, we enjoyed free outdoor concerts. We met Al’s infant grand-niece and took her and her parents on a Swan Boat ride in the Boston Public Garden. Later that evening, we paid respects to the site of the Boston Marathon bombing.

On our last day, Sunday, the humidity finally broke, and we headed out to Plimoth Plantation, a recreation of 17th Century life among the native Wampanoags and English settlers who arrived on the Mayflower.

Here we met Phillip, a Wampanoag descendant and interpreter, who wore his hair half-shaved, half braided, as his ancestors did, to avoid entanglement with a drawn bow. He explained all the ways the Wampanoags made use of nature’s bounty to thrive along the Massachusetts coast—building bark longhouses that provided ample heat and comfort throughout the winter, constructing summer huts from reeds that swelled with moisture to become rainproof, planting beans next to corn so the tendrils would curl up the stalks, shading the roots with squash leaves and blossoms that minimized weed growth. There were game and fish aplenty in the forests, rivers and sea. “We had everything we needed,” he said.

In the nearby English community, we chatted with interpreters who reenacted the lives of actual settlers. One young woman rocked in her dark thatched roof house, clothed in a long linen skirt and yellow vest, stitching a napkin’s hem, and told us how hard life was, how much she missed her old home in back in Surrey. The only good thing about coming here, she said, was the promise of owning land, something her husband, a cooper, could never have dreamed of back in England. When asked why they did not call themselves Pilgrims, she explained, “Pilgrims are people who travel a long way to a holy land. This is far from a holy place. It’s but a wilderness.”

Same land. Two diametrically opposed world views. I couldn’t have asked for a better example of how mind-set shapes experience.

So here I sit, typing on my laptop, inching back into my normal routine, pondering. Vacation, we discovered this year, is a state of mind. You don’t have to travel far to find it. And (I am certainly not the first to observe), how we frame our experiences defines every encounter. It’s all too easy to lapse into longing for what you lack in the midst of all the plenty you have yet to recognize. The best respite from struggle is gratitude.

The trick is to maintain that vacation awareness—that ability to step back from daily demands and clutter, to pause and truly see—in order to appreciate and make the most of what’s right here, right now.

I’ll keep trying.

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.

In Search of Earthworms

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On Sunday, in 90 degree heat, I decided it was time to weed our backyard rock garden. I haven’t done any gardening in several years, mainly because the last time I tried, I messed up my hands. But I couldn’t stand it any more.

Our yellow day lilies, just bloomed, were half-hidden by an encroaching jungle. Between the extreme temperatures and forecasts of more heat, humidity and thunderstorms for the coming week, I figured if I didn’t do something, the weeds would thrive at the lilies’ expense and choke out any hint of beauty.

Besides, weeding seemed like the perfect antidote to all the words swirling in my mind—a writer’s liability. Perhaps the physical work would negate the narration and bring some insight.

I bandaged my finger ulcers with extra care to minimize irritation, lathered on sunscreen and insect repellant, donned an old straw hat, found my lavender gardening gloves in a basket in the kitchen (their special coating keeps out the dirt but allows skin to breathe, essential for my hands), located my angle weeder in the garage (a curved, sawed-edge tool with a prong at the tip), and headed into the backyard.

It was already steamy by 10:30. I tackled a few tall weeds—at least four feet high—first. I have no idea what they were, but they pulled out of the hot, dry earth easily. Ginger, my constant shadow, sniffed around the yard a bit, then wanted to go back inside after about a half-hour. I kept working.

Wild violets had carpeted much of the rock garden. They’re pretty in the spring, but very aggressive, leaving no room for much else. They’re also tenacious. I quickly discovered that I’d have better luck digging and leveraging out the roots with my angle weeder, rather that trying to pull with my hands—more effective, less strain.

As I dug and prodded and pulled, I wondered where the earthworms were. The ground was parched from the five-day heat wave, so maybe they were hiding farther beneath the surface. But their absence surprised me. When I was growing up, I used to love to spend a hot summer afternoon weeding in the shade of my parent’s front garden, watching the earthworms crawl amidst crumbles of dirt, their soft pink bodies squeezing and stretching as they aerated the soil. Wherever they appeared, the earth felt cool and smelled rich.

Mosquitos buzzed in my face, drawn by sweat. I swatted them away, smearing my cheeks with dirt, and kept on weeding. I discovered a forgotten sapling that I’d planted a year ago in the back of the garden. Somehow, it had survived all the snow and cold of winter. Still not much bigger than a twig, it had quite a few leaves. I cleared the ground around it for more sun. Nearby, I left what looked like a wild rose that had taken root, perhaps a mistake, since they’re invasive.

Weeds near the stone steps and larger rocks in the garden proved much harder to evict.  I tried prying them out with an old trowel, but the trowel bent under pressure. So I found a long handled tool in the garage with a curved fork at one end and managed to claw out some dense root clods. I sawed off a few woody weeds that were impossible to dislodge.

As I worked, I tried to shut off the constant flow of description in my head. All the obvious gardening metaphors played through my mind—clearing away the clutter, seeing what’s really in front of you, enabling new growth/life/ideas. But the only way to achieve that through weeding, to turn it into a meditation, is to focus and stop the word flow.

I never got there. I just kept working until I’d cleared as much as I could and my heart was pounding too loudly in my ears from all the heat. It occurred to me that the best thing about weeding is the immediate gratification of making room. I found a slug, glistening on a blade of grass. I observed how some roots are like fine hairs and others, like white and purple carrots. I imagined planting basil and wildflowers.

By 1:00, with sweat flinging off my hair, I declared my weeding done. My hands felt okay, but my back and legs, weary. Grateful to discover I could still dig in a garden, I stepped back to review my handiwork. Plenty of weeds left to be pulled, but the lilies’ sunny trumpets were now easily admired.

Back inside, Ginger at my feet, I sat down at the kitchen table and drank a tall glass of seltzer. Time for a cool shower. It had been a good morning, though no great, hoped-for insights about work or my writing or something else from all that weeding. Such things don’t come when chased. They prefer to tunnel beneath the surface and emerge when ready.

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

Weather Spotting

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Hot. Cold. Hot. Cold. Hot. Cold. Hot.

‘Tis the season for unsettled weather, which always seems to be the case in New England. As the saying goes, if you don’t like the weather here, wait a few minutes.

My neighbors walk their dogs and tend their lawns in shorts, tee-shirts and flip-flops, but I’m still doing my thing with more layers than I’d like—long pants, a sweater or sweatshirt over a lighter top, my indispensable wrist warmers, socks and shoes.

I took the bold step of bringing my winter sweaters to the dry cleaners only last week, but missed them a few days later when we were deluged with cold rains that triggered my Raynaud’s and caused a messy leak in our basement. Why, I wondered, couldn’t the rain have fallen over Colorado’s burning Black Forest, where it was really needed?

Of course, you can’t control the weather any more than you can control a chronic disease with a mind of its own. The only thing you can control is the way you respond.

Managing my health takes much vigilance, many doctor’s appointments, good nutrition, regular exercise, taking all of my meds every day, tending my finger ulcers to ward off infection, getting as much of a good night’s sleep as I can, recognizing and managing stress triggers, appreciating love from family and friends, common sense, pro-active problem-solving and doing my best to stay positive. That’s the short list.

Dealing with the weather is a different beast. It’s not just about following forecasts so I know how to dress and keep warm. It’s also about trying to understand and not get overwhelmed by the strange shifts and extreme weather patterns we’re all experiencing. Fatal floods in Europe, record-breaking forest fires in the Rockies, the Oklahoma City tornado, last fall’s Superstorm Sandy—not a week goes by when there isn’t another extreme weather event somewhere around the globe. Lately I’ve been looking at the sky and feeling like it doesn’t make sense any more.

Mark Twain (or perhaps one of his contemporaries) famously said, “Everyone talks about the weather, but nobody does anything about it.” Well, I decided last week to do a little something. A bit of a weather geek to begin with, I drove an hour-and-a-half to Manchester, N.H., one evening to attend a three hour training as a National Weather Service (NWS) volunteer weather spotter.

Weather spotters fill in the observations that radar can’t pick up closer to the ground—like the size of hail or the siting of a funnel cloud, where there’s flooding or whether winds are strong enough to topple healthy trees. I can now explain how tornadoes form, what kinds of thunderstorms are the most dangerous and their warning signs. I have an official weather spotter ID and the number to call for our NWS bureau in Taunton, Mass., to report on signs of serve weather.

It’s my own small way of responding to climate change. If I can help to fill in the blanks about approaching storms, then maybe I’ll enable someone to get out of harm’s path.

It also gives me some sense of control, albeit illusory. At least I have a better understanding of what clouds signify and why hail falls and when to run to the basement.

In a perfect world, we wouldn’t have to worry about any of this—tornadoes that drop out of the sky and destroy elementary schools or diseases that appear out of nowhere and ravage our bodies. But the world is far from perfect. It just is. All we can control is our own response. This is mine.

Photo Credit: Nicholas_T via Compfight cc

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.

Spilled Coins

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Quarter past ten. Why does it always take almost as much time to drive 50 miles from my home into Boston as it does to maneuver through local traffic and park for my rheumatology appointment?

I’ve driven round and round the garage, finally located a space on the sixth level. Heading toward the stairs, I notice the elevator has just arrived and decide to shave a few minutes. For some reason, I have it in my head that I’m late, when I’m actually, amazingly, early for a change.

A curly haired woman in capris steps into the elevator ahead of me. As the doors begin to close, another woman with a rolling briefcase runs, calling for us to wait. The first woman reaches her forearm to hold the door. “I’m not very good at this,” she apologizes. “But you did it!” says the third passenger.

When the curly haired woman steps toward the back of the elevator to make room, I notice her hands. They are frozen into fists, with scabs from ulcers on the back of each knuckle. Her face is smooth and tight, lips pulled into a grin. She carries her paper coffee cup in a pink rubbery sleeve with two handles that she can hook with each hand.

As familiar as I am with scleroderma, I’m startled. I don’t often meet a fellow traveller. I feel badly for her. Her hands seem so much worse than mine. I wonder if I should say something. But casually commenting, “So, I see you have scleroderma, too,” feels awkward. There’s no hiding this disease. We all want our privacy.

We both walk quickly across the street and into the medical center. She pauses to study the floor directory. I signal the elevator and am the first one in, this time. We exit at the same floor, with me a few steps ahead. We sign in for our appointments simultaneously. I overhear her saying that she is seeing the same rheumatologist. Her appointment is the one before mine.

As I open my wallet, a dozen coins spill onto the carpeting. Great. This is the price of leaving the coin compartment unzipped to save my fingers. The curly haired woman is the first on her knees to help me. She scoops up some quarters and dimes with her fists and places them on the counter before I can flip a few into my palm. “I often find using a piece of paper helps,” she says. I thank her, marveling at her speed.

We sit on opposite sides of the waiting room. She scrolls on her pink-encased smart phone. I type on my laptop. Our doctor is running late, as usual. I think how grateful I am that I can still type. I notice how adept she is at maneuvering objects with her two fists. I keep track of her turn, since mine will be next. She disappears into the warren of exam rooms.

When I finally see my doctor, an hour later than scheduled, we go over all my latest symptoms and difficulties. My ulcers have been particularly troublesome for the past few weeks, due, no doubt, to the odd extreme temperature changes of late. It’s frustrating, I tell him. They’re sore all the time. But, I add, there was this woman in the waiting room who had the appointment before me. Her hands were so much worse. What do I have to complain about?

It’s only a few days later, when I recall her comment about how a sheet of paper helps her to scoop up coins, that I realize she may well have thought the same of me and all my bandages.

This is a jarring disease. It disfigures and contorts the body. But it doesn’t straightjacket creativity, so essential for coping. My curly-haired counterpart has figured out how to scoop up coins with her fists. I have found the lightest touch keyboard so I can still write with my bandaged fingers. I wouldn’t trade my frustrating but familiar problems for hers, and I expect she would say the same of me. Maybe we’ll talk about it, next time our appointments coincide.

Photo Credit: uhuru1701 via Compfight cc

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.

Take Me Out to the Ball Game

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Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.