Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

Memorabilia

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A stack of 1960s Mad Magazines, flame and turquoise and mustard Fiestaware, a fake leopard fur coat. A quarter-size violin in a black cardboard case.

Rainbow mounds of beads, dishes of mother-of-pearl belt buckles, baskets of wooden spools, some with thread still wound. Pitchforks, spades, combat helmets, buoys and cowboy boots. A life-size leather horse.

Shelves of Steiff stuffed animals that remind me of the bristle-haired terrier and goldfish I used to have on my bed as a child. A cancelled Pepsi Cola Bottling Company paycheck for 74 dollars and change. A curled black-and-white portrait of a seated, laughing baby, staring brightly into the camera, with a neat cursive inscription on the back: “Helen or me. Keep.”

Al and I wander through dozens of booths on the last day of the July Brimfield Antique Fair, as exhibitors pack up their goods. The afternoon is humid, 90 degrees once again, and we stroll and poke without buying. Occasionally we ask how much, but the price is always too high and we don’t have the energy to bargain.

One table is stacked with milky green glass dishes that match some of our Passover set, passed down from Al’s grandmother to his mother to us. “Are we missing anything?” I ask as I finger a small 10 cent bowl. “No,” he says, rolling his eyes.

Al inquires about the price of a Red Sox pennant, similar to one he has in our basement. “Twenty-five dollars,” says the seller.

I open a wooden trunk that reminds me how I shipped my bulky clothes and desk supplies and a senior prom portrait of my boyfriend and me to college in a black-and-brass trunk that got misplaced. It took nearly a week to locate it. I missed the portrait the most. We broke up that Thanksgiving.

We walk by a drill press, a radial saw, Sears power tools like the ones that filled my father’s basement workshop. There are tables laden with steel chests that contain stacks of shallow drawers. My father used to store his screws and nuts and bolts by size, neatly labeled, this way. I pull open one of the drawers. Empty.

Al sorts through a bin of hardcover books. I imagine the Louise-Nevelson-like sculptures that could be made from keys and doorknobs and letterpress trays. We admire an old leather barber chair.

Sharing a fresh squeezed lemonade, we head back to our car, drained by the heat, glad our energy timed out in synch, proud we resisted buying any of the same kind of junk we don’t need more of, pleased just to point and nudge each other when we discovered something odd or ironic or familiar.

As I drive us back home on the Mass Pike, I wonder: What will I leave behind that might find its way onto a flea market table, picked over, bargained for, set back because the price is too high?

And I wonder: Whatever happened to Helen and her sister, with the beautiful cursive script?

A zinc bathtub, a white lace bridal gown with crystal beading, a mannequin’s arm. A black-maned rocking horse with a red saddle.

A hand-painted Chinese checker board, a vinyl Barbie case, green glass Coca Cola bottles. A tin milk cooler.

Cobalt champagne glasses, a silver flute nested in blue velvet, a neon orange life preserver. A wheel of fortune.

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

Enough, Already

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On Monday afternoon, I took Ginger to the vet. This was her semi-annual check-up, time for renewing all her shots. For a nearly 15-year-old Golden, she’s doing great, though getting a bit slow on the up-take, between arthritis, some hearing loss and what I suspect is a touch of senility, as well as the inevitable lumps and bumps so common to her breed.

Bringing her takes some preparation. She needs a walk, first, around the block, to loosen her joints and be sure she empties her bladder somewhere other than the exam room floor. Of course, the skies chose to open right before we needed to leave, so I took an umbrella and she got soaked, though didn’t seem to mind. Then she scrambled into the car with none of the usual coaxing, probably to get out of the rain.

At the vet, though, anxiety set in. She panted and panted, sounding like a choo-choo train, as she lay on the waiting room’s linoleum floor. When her name was called, she tried to pull me out the door. In the exam room, she paced back and forth, attempting to hide behind my skirt. It took our vet, her aide and me to lay calming hands on her in order to complete the exam and all the shots. We were both glad to get her back into the car and drive home.

I know how she feels. I am tired of doctor’s appointments. In recent weeks, I have seen my local rheumatologist, my Boston rheumatologist, my cardiologist, my uro-gynecologist, my dentist and my podiatrist. I’ve had my feet x-rayed. I need to make an appointment for my bi-annual pulmonary function test.

I don’t mean to whine. I’m grateful for all of these gifted medical specialists. Some people with scleroderma have to travel a half-day or longer to get the equivalent treatment. I only have to travel between 10 minutes and an hour-and-a-half to receive some of the best care in the world.

But I’m still tired of it. I wish I could take a summer vacation from it all.

This past Saturday, June 29, was World Scleroderma Day. Organizations in the U.S., Europe, Canada and Australia rallied to publicize the search for a cure. Someday, I hope, if enough people pay attention, and enough of us contribute, and Congress finally passes the Scleroderma Research and Awareness Act (reintroduced, once again, this legislative session, as HR1429), then maybe, just maybe, researchers will have enough funding to find that cure and future patients will be able to find lasting relief from this complex and devastating disease.

In the U.S., you can contribute here:

Scleroderma Foundation
Scleroderma Research Foundation

And write your representatives here:

Scleroderma Research and Awareness Act – HR 1429 – Scleroderma Foundation

Thanks for listening.

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.