Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Barnacles

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Overheard on the Block Island Ferry this past Sunday . . .

Boy, about 10, looking over the railing at sea foam as the ferry pulls out of Old Harbor, heading back to the Rhode Island coast: “Look, there’s barnacles in the water! Do I have barnacles?”

His older brother, maybe 11: “No, you don’t get barnacles unless you’re under the water for a long time, like maybe two weeks.”

Fortunately, the older brother is correct, and the boy has attracted no barnacles of his own. The ferry’s powerful engine hums as we pick up speed and cruise past the island’s cliff-like dunes, dull copper beneath overcast skies.

I lean back against the blue bench along the middle deck, watching the dunes and the North Lighthouse slip past, and contemplate barnacles, those tiny, cream-colored sea creatures that attach themselves to boulders and boats and whales in lacy patterns and feed on plankton within their sharp, crusty shells. No need to move anywhere once they find a home. They just latch on and draw sustenance from whatever drifts their way.

Like worries.

I have a few of my own that I’d like to shed, worries about my health, money, work, family transitions, our aging golden retriever, reactionary politics, the NSA, the Middle East, climate change.

But they’re tenacious, clinging to my subconscious, scraping me when I indulge them, cutting. No easy way to dislodge them and toss them back into the sea.

The ferry cruises now at full speed across open ocean, heading to the mainland. A small red tugboat pulls what appears to be a stranded white yacht. On the horizon, sailboats catch the evening breeze. I relax into the rhythm of the boat rising and falling over light waves. Concerns that have dogged me all day when I should have been enjoying myself magically evaporate into the moist sea air.

I’ve been rereading Melville’s brilliant Moby Dick this summer. As the ferry surges forward, I recall Ishmael’s opening monologue:

Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then I account it high time to get to the sea as soon as I can.

A flock of cormorants fly in formation, skimming the water. The setting sun burnishes blue-black waves to a salmon-pink patina.

From saltwater we came. Perhaps that is why the sea is so soothing. Sail on, sail on, swift enough to evade the barnacle’s pincers, slow enough to cast angst adrift. At least ’til landfall.

Photo Credit: shoothead 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.

Too Much Stuff

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My desk is out of control. This happens every few months or so, when I’ve been juggling  a variety of projects at the same time, and I have a pile for this, here, and a pile for that, there. After a while, the piles start crowding out any space in the middle, and I feel like I have nowhere to work or room to think.

Then I start moving piles to corners of my office. Problem is, the piles get dispersed, but I don’t make a decision about filing or tossing and the clutter remains unresolved. It just seems to follow the biblical injunction to be fruitful and multiply.

This proliferating clutter seems to mirror what’s going on in my life. I’m trying to do too much. I know this. I know I need to make some decisions about priorities and focus. I’m working on it. The trick is to keep this from becoming yet one more project that piles up.

I used to pride myself on my ability to multitask—the modern-day badge of honor, especially for women who juggle family and career. It’s an important skill-set, sometimes crucial for getting through the day. But there is growing evidence that multitasking isn’t necessarily such a virtue. In fact, multitasking can actually reduce productivity by up to 40 percent.

It can also be fatal—as in texting while driving.

The older I get, the more I want to declutter—my desk, my to-do list, my home, my mind. I want to eliminate the stuff that isn’t necessary and concentrate on what’s really important. I want to be able to focus on one thing at a time and give it my full attention, then move on to the next. Quality over quantity.

Essential for any well-lived life, but all the more so when you are managing a chronic disease, spend too many hours in doctor’s appointments each month and want to make the most of the time you have, especially those days when you’re feeling strong and alert and have energy in reserve.

Where to begin?

It seems that whenever I clear my desk, I begin to clear my head. I’ve also found that making a series of small adjustments over a longer period of time—rather than undertaking a major, exhausting purge—adds up to a significant, nuanced change of habit.

So my goal is to pick one pile, one drawer, one small corner to declutter each day—a small project that takes only about 10 minutes. Over the course of a week or a month, I hope to clear my space and clarify my priorities.

The Jewish High Holidays come early this year, the first week of September. The weeks leading up to Rosh Hashanah, the Jewish New Year, are a time for reflection and introspection—how to do better, be better, mend what needs tending and start afresh.

There’s a lot more to it than clearing your desk. But that’s as good a place to start as any.

Photo Credit: Dimmerswitch 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.

Transitions

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I made a cup of hot tea this morning. A few weeks ago, in the midst of July heat waves, this would have been unthinkable. But this morning it’s only in the ‘60s. August, yes. But this is New England.

I know, I know. If you don’t like the weather here, just wait a few minutes. It’s supposed to be a great week, mostly sunny, in the low ‘80s. Today is just a blip.

But my hands went painfully numb after I ate breakfast, my usual, Grapenuts with Lactaid and fresh fruit, orange juice. Everything was just too cold.

I’m not ready for this, not yet. Over the weekend, while taking a walk, I noticed a few leaves had fallen, harbingers of autumn. Six weeks past the summer solstice, and already the sugar maples on our street are beginning to sense the lessening span of daylight.

Back to layers—sweatpants, a short-sleeved sweater, a light sweater pullover, my fleece wrist warmers, socks, shoes. No doubt everyone else is in shirt-sleeves, shorts and sandals. I long ago learned that I have no choice but to accept the fact that I have to deal with my own broken internal thermostat, but the early signs of summer’s inevitable departure always get to me.

It’s a month for transitioning. In 10 days, Mindi will return from Israel after two years living and working in Tel Aviv, to begin graduate school back in the States. Though we’ve stayed in touch via electronic media, I haven’t seen her for a year. Until I can give her a big hug, I won’t believe that she’s finally home.

And this weekend, Emily returns from her live-in summer internship, soon to leave again for her senior year of college. Already, she’s taking the GREs, planning her grad school applications. How did this happen, so soon?

For the first time in four years, we will have both daughters home at the same time, both preparing for the fall semester. Sure to be a whirlwind of intensity, but I am looking forward to us all being together again, even for just two weeks.

Al and I still have a little vacation time planned for August, a few more days to get away from work and responsibilities before everyone gets home. A few more days to linger and relax in the warm afternoons yet to come.

The tea worked. My hands have returned to a comfortable level of blood circulation. Maybe I’ll be able to shed at least one sweater by afternoon. It’s sunny. The trees outside my window are a lush, deep green.

Hang on, summer. Hang on.

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.

Boxed In

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Last week I found myself sitting inside a tall, phone-booth-shaped plexiglass box, staring out a window at blue sky over Main Street and the County Courthouse, my nose squeezed between padded clips, panting into a rubber mouthpiece connected to some rigid tubing connected to a plastic bag.

This routine is part of my biannual pulmonary function test, or PFT, a series of measurements to assess my lung capacity and efficiency. I’ve had to undergo this test numerous times over the course of about 25 years, to keep track of how my scleroderma is affecting my ability to breathe and absorb oxygen into my bloodstream. The same tech has been administering it since I began. His name is Alan.

We’ve both gotten grayer over the decades. Alan is an avid golfer who favors tie-tacks that look like golf clubs with a little pearl for the ball. Whenever I have my appointment, I always ask him about his golf game, and he always asks me if I’ve written another book like my environmental history of our city’s urban forest, which I published in 2001.

Then I take note of what’s new in his office. This time, it’s the location of the plexiglass box. Usually I don’t have to sit in the box until the end of the series of tests, and it’s in another room—without a view. But the equipment was updated since my last visit, and now the box is in Alan’s office. Which is a nice thing, because he happens to have a corner space on the third floor of the hospital with a great view of downtown.

And the view really helps me get through the tests, especially the last series when I essentially have to hyperventilate into this bag with the door of the box closed, to control the air quality within the box. Not for claustrophobes.

Alan has a very soothing voice. “Breathe normally, now,” he instructs me after I adjust the tight nasal clips and arrange my lips around the rubber mouthpiece so no air escapes as I breathe into the plastic bag. All of this equipment is attached to the internal wall of the box, with some other tubing leading outside the box to tanks that provide the correct mix of gases. The set-up is fixed, so you have to sit really straight as you breathe into this contraption. Truly an awkward position. Nothing normal about it. At least I know what to expect after all these years.

We begin the first series (door open). “Okay, now push, push, push, push until you can’t get out any more . . . . and b-i-i-i-ig breath in!” I force out the air from my lungs until they feel flattened and then inhale a big gasp, but it always seems like I can’t refill them all the way. Frustrating. Each time I do this test every other year, it gets a little harder. Two more times to repeat. I marvel at how Alan must say the same words thousands of times annually with different patients, but never seems bored or annoyed.

There are several more variations on this basic theme of normal breathing, big exhales and big inhales. Then there’s the closed-door test, when you have to pant into the bag with your fingers on your cheeks, and then something clicks inside the connection between the mouthpiece and the bag and you have to keep panting, but your exhalation is blocked, so it’s harder. Every test requires three repetitions.

Time to remove the damn nose clips and rest in-between series, as the equipment recalibrates. I remark how the County Courthouse is all finished now, as opposed to my last visit, or was it the one before, when it was still under construction? I remind Alan how my first visit was at the old hospital, in a room with no windows and a big green metal tank with the gauge on top in full view. Now the gas tanks are hidden behind a curtain.

He pulls up the results on his computer screen. Some are within the same range as two years ago, some a little worse. I try not to get discouraged. Better to wait until my rheumatologists can interpret it for me. Overall, considering how long I’ve had this disease, I’m still doing well. Need to keep exercising.

After about a half-hour, we’re all through. “See you in two years,” I say, as I walk out the door into the white hospital corridor. Deep breath. Glad to be out of that box, heading into a blue-sky day.

Photo Credit: conform 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.

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.